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Secondary progressive MS: managing the transition - chatroom transcript

16 May 2012, 10am - 7pm

Contributors:
Jeremy Chataway - Consultant Neurologist
Susan Hourihan - MS Occupational Therapist
Wendy Hartland - MS Nurse
Stephen Wilson - Cognitive Behavioural Psychotherapist
Alison Smith - Rehab Specialist Nurse
Vicki Matthews - MS Nurse

This chatroom is an open forum. The views expressed by participants are not necessarily those of the MS Trust and do not constitute legal or medical advice.

A list of publications and resources mentioned in during the chatroom is provided at the end of the transcript.

For further information on topics raised, please contact the MS Trust Information team.


Read the whole transcript


Go to specific questions asked


Simon - MS Trust:
Welcome to today's chatroom. We will be looking at issues that arise around the time when someone's MS changes from relapsing remitting to secondary progressive (SPMS).


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Andrew:
My neurologist, Dr Coles, said he thought I might now be in secondary progressive MS, but how do I actually know? Yes, I feel rubbish all the time, but not any more rubbish than I did during long relapses.

Jeremy - Neurologist and Susan - OT:
This is a complex question. The first point we think is to check that the person with MS is truly transiting - not in a prolonged relapse, which may respond to steroids. It is often in retrospect that it is clear that progression is the main problem. There is no rush to make this decision. Regardless of the decision, the person with MS and MS team should consider therapy or other medical options that may improve function.

Andrew:
If it is still a relapse, I will have had it for about six months now. Are any of the new drugs, eg fingolimod, any good for secondary progressive?

Jeremy - Neurologist and Susan - OT:
Hi Andrew, your neurologist may consider that you are in SPMS since they are unable to establish any new relapse activity, or that they feel that there has been progression of symptoms that are ongoing without improvement since your last relapse. It may be that further time is required to be sure that you are really in the more progressive stage of the disease. Your MS team may want to review you to see if there are any areas to help you feel a little less 'rubbish'.


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Jacqueline:
I saw my neurologist last week and he said I was now secondary progressive. He also said that even if he could prescribe any medications and disease modifying drugs, there is nothing he could give me. I know people with SPMS who are on Copaxone or have had mitoxantrone. Is there really nothing that can help me?

Jeremy - Neurologist:
The medical treatment of secondary progressive MS is difficult. As I said above, firstly discuss with your neurologist if a further course of steroids might be useful. There is a trial of natalizumab (Tysabri) in SPMS called ASCEND which your centre might be taking part in. Other trials will come available. Mitoxantrone may have a role but beta interferon and Copaxone have a limited role in SPMS.

Apart from the medical options available, it is a vital time for you to receive a multi-disciplinary team (MDT) assessment of your needs. Our experience tells us that there are so many things that can be helpful at this stage which can improve function and every day life. A full MDT assessment from a group with experience in MS is recommended. The MDT assessment would often involve input from a neurologist, physiotherapist, occupational therapist, MS nurse and others as necessary.

One point that is really important is that your health care team is linking you with social service teams, and vice versa, when this is necessary. Integrated health and social service input provides the best opportunity to really offer all the support people with MS may need. Benefits reviews are really important, as are reviews of care needs and equipment to help optimise function at home and in the community.


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Mark:
I was told I had gone from relapsing remitting MS to secondary progressive. Can you have episodes as well?

Jeremy - Neurologist:
Yes, it is possible to have relapses in SPMS (though less than relapsing remitting MS) and steroids / therapy evaluation will have a role.

Mark:
No, not more steroids. I have had eight courses, both intravenous and tablets of methylprednisolone. So far I have not developed problems with my bones (osteoporosis?). How many times can you have steroids? Having them as an inpatient is totally boring, are the tablets just as good?

Jeremy - Neurologist:
We would say steroids up to three or four times a year, as long as they are truly working; saving them for significant dips down. No one knows if oral=intravenous or intravenous=oral. You can have IV as a day case safely or at home if that service is provided. Dexa bone scan [a low exposure X-ray test measuring bone density] if you are having regular steroids if you are having regular steroids.

Mark:
Thank you for your help, at least I know where to go.


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Christine:
I was diagnosed with secondary progressive MS last year after increasingly troublesome symptoms - weakness in right side, starting with foot drop then weakness in right hand and arm. This all came on from 2005 and now I have an FES to assist lifting my foot and recently had to succumb to a rollator to walk with independence after many, many falls. My MS consultant says, after gathering my history together, that I have had MS 30 years (years of unexplained symptoms in the 80s and 90s) then a long period without any symptoms at all until now. I am still in a state of shock with this diagnosis and how bad it has got.

Jeremy - Neurologist and Susan - OT:
Your state of shock is very common. Even for people with MS who are originally identified as having relapsing remitting MS will tell us that they are shocked when told that they are now progressing. It is worth discussing this with you GP or MS team to see if you may benefit from some support such as counselling or other supports.

Christine:
Can SPMS reach a plateau or am I just going to carry on getting worse at this rather alarming rate?

Jeremy - Neurologist and Susan - OT:
SPMS can plateau, have periods of relative stabilisation or may progress further. Some people with MS tell us that they see it as a more stable form of the disease as they are less likely to have unpredictable relapses; others continue to see progression.

Andrew:
Your comments about counselling are very true. A week ago I was convinced that I was depressed to the point of needing some medical help. However, a long chat with my MS nurse, Fiona Ball, has left me feeling much more in control and able to cope. So no SSRIs [anti-depressants] at the moment. Well done specialist nurses!

Jeremy - Neurologist and Susan - OT:
Andrew, I am sorry to hear about your experience but so pleased to hear that you contacted your MS nurse. Fiona sounds brilliant and a good example of the support that many of the MS specialists out there provide. The important thing is to seek help when you need it.

Lynn - MS Trust:
If you're not sure how to contact your MS nurse you can find them on the map of MS nurses.


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Jane:
I was diagnosed with secondary progressive MS three years ago, after about five years of waiting for a diagnosis. I never had relapsing MS. I have had mitoxantrone but it wipes out my white cells so now this medication has been stopped. What else could I take? I have been on no medication for nine months whilst my neurologist decides what to prescribe as I am over 55 it seems I don't qualify for a lot of drugs. A lot of time seems to have been wasted.

Jeremy - Neurologist:
I'm sorry to hear than you don't tolerate mitoxantrone - could you try it again with a greater gap between doses? Also see the earlier answer above re other options eg trials such as ASCEND.


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Christine:
How vital is extra vitamin D? I keep reading about it but my neurologist hasn't mentioned it. And are Omega 3 and 6 essential and will all these things be an aid to secondary progressive MS?

Jeremy - Neurologist and Susan - OT:
At present no clear evidence based guidelines on vitamin D. It might be worth getting the vitamin D levels measured.

Kate:
I started taking big doses of vitamin D after seeing a nutritionist about nine months ago. I've been buying these myself as I was only offered vitamin D and calcium as I was in the at risk group for bone problems. The neurologist has now said to have the big doses but the NHS won't do the blood tests. They can be done privately by an NHS hospital in Birmingham.

I now feel well in the mornings when I wake up after I have dealt with the pain and stiffness of not moving while asleep. I use a chi exerciser for up to an hour while still under the duvet.

I think the vitamin D may account for feeling better in myself. Is there any way people with MS can get their vitamin D tested on NHS as mine was very low when first tested?

Jeremy - Neurologist:
Vitamin D can be measured through the NHS.

Kate:
How do I get Vitamin D tested? The community matron took blood as few weeks ago and 'they' refused to do the test, which is why I had it done privately. I don't know what the risks are if it gets too high, but I did read on a US website that vitamin D has to be very high before there is a risk. I've also been told to take vitamin K with the vitamin D - something to do with cardiovascular risk.

Jeremy - Neurologist:
You have to be a little careful with too much vitamin D since it can cause the calcium levels to rise. 1000iu/day is generally fine. Your GP or neurologist should be able to test and advise. But it is still an area under research. As you said vitamin D is being explored in heart disease.

PinkLady:
How do you get your vitamin D levels measured on the NHS? Both my GP and MS nurse have refused to do this for me as they say there is no recommended limit set by NICE, so no point in knowing your levels.

Jeremy - Neurologist:
Simon, would the MS Trust vitamin D brochure be useful here as a link?

Simon - MS Trust:
Yes, we have a factsheet on vitamin D that might be helpful.

Kate:
Jeremy, thanks for your comments on vitamin D. The neurologist put me on 3000iu. How often do you think me vitamin D levels should be tested? Do I need to stop taking it for a few days before the test so we're not measuring the recent doses?

Jeremy - Neurologist:
Maybe check vitamin D and calcium every 6 months or so - but measure with you on treatment. If the level is too high you could then reduce your dose.

Kate:
Thanks. Is the calcium check a blood test? Will my GP be able to do it?

Jeremy - Neurologist:
Yes, it is a simple blood test and your GP or nurse will be able to do it.


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Justin:
Is the distinction between relapsing remitting MS and secondary progressive MS more a question of semantics than an identifiable physiological difference?

Jeremy - Neurologist:
RR to SP is a biological change. We think of it as the change of balance from inflammation (myelin) to axonal (electrical cable) damage.

Kate:
I was diagnosed ten years ago and was told probably I was secondary progressive then, but relapses have continued. Jeremy's comment about balance from inflammation to axonal damage fits with my experiences of the types of pain I get now.

Jeremy - Neurologist and Susan - OT:
Hi Kate, your experience fits with our experience of working with people with MS in transit or in SPMS. Top concerns from people with SPMS include: mobility, fatigue and pain. It is important to have an MDT review when these problems arise as the input for assistance here often requires the help of more than one professional.

Justin:
What are the perceived effects of this change of balance? Would it normally be expected to be identifiable through MRI or any other form of testing?

Jeremy - Neurologist:
I suppose an example of the change of balance from inflammation to axonal damage is that problems such as walking tend to remain with people with MS and may slowly progress. On research MRI it is possible to see some minute shrinkage of the brain and spinal cord (atrophy).

Justin:
Kate, I was also formally diagnosed about ten years ago. It was felt at that stage that I had relapsing remitting MS, although more recently it has been considered to be SPMS. To add further to my confusion, I have been told that I have SPMS, which sometimes experiences periods when symptoms worsen. On that basis, what is the difference between that and relapsing remitting MS (if there is a difference)?

Jeremy - Neurologist:
You're right, it is difficult in the early stages to distinguish relapsing remitting MS becoming SPMS. Problems such as walking slowly getting worse over say two years and less and less response to steroids might be reasonable clinical indicators of SPMS. But it is not easy at times, trying to take away the natural fluctuations that occur.

Justin:
Is there actually a distinction between the two, which in all situations will be likely to provide unequivocal evidence to determine the necessary resulting treatment?

Susan - OT:
If you are referring to outcomes, it is really difficult to predict as all research looks at groups and averages. However, there is always wide variation within groups and it is impossible at this time to tell where in the group one person with MS will sit compared to another. One good paper published in the journal Neurology in 2009 indicates that, in a group of people with MS in Canada (British Columbia) the impact of relapses over the long term was minimal, either for early or late relapses.

Simon - MS Trust:
You can read this paper online on the PubMed website.


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Andrew:
Will Fampyra help the axonal damage?

Jeremy - Neurologist:
Fampyra (fampridine) is a symptomatic treatment that might improve walking in some people with MS. It blocks the potassium channels and helps electrical conduction.

Andrew:
Thank you MS Trust for setting up this page. I have gained a lot by reading the comments and feeling in touch with 'experts'. Mutual Support is priceless.


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Christine:
Hi again! I think this is my last question! Because I am unable to use my right hand I have been using, and I guess will continue to, overuse my left. Consequently I now have severe tendonitis and have my good hand in a purpose made splint. So this question is sort of MS related. My rheumatologist seems reluctant to give me another steroid injection though she says she will give it some thought. I had one last October but it is much worse now. I am in a horrible amount of pain so should I play the MS card to get an injection as I can hardly move my hand at all and can't use the other one. She is putting other therapies in place eg wax baths etc but I'm pretty desperate.

Jeremy - Neurologist:
If your rheumatologist thinks you have tendonitis that is not responding to other treatments, it would be reasonable to have another local steroid injection to the tendons.

Regarding computer use, you may want to consider contacting a group called AbilityNet or another IT accessibility group. They offer lots of free advice on their website to help make computer use easier. You can also get an individual assessment of your needs. There are quite a lot of strategies to aid people with fatigue and movement problems to still be able to use a computer.

Christine:
Thank you very much. This has been a really helpful session for me, for the help you have given and for being able to be in touch with other people's feelings and their comments. - We are not alone! Even if, sometimes, it feels like we are.

Susan - OT:
Glad you could join the chatroom. You're definitely not alone - there are lots of people in different areas trying to help here - we're all working together.

Susan - OT:
We would encourage people to seek out therapy help if you feel you need it. Each local community is different as to how you can access therapy input. Sometimes you will need to go via your GP to get a referral or to contact your local MS nurse/ specialist for a referral. Other times you may be able to refer yourself, such as to Social Service input. But, there is usually help out there, so keep asking. The MS Trust website also has a map of MS services that you can use to locate physiotherapists and occupational therapists who can help you.

Simon - MS Trust:
The map of MS services has links to MS nurses, specialist OTs, physios and other therapists plus a range of other useful links.

Susan - OT:
One other area that we would encourage you to discuss if relevant is that of work, whether it is paid, unpaid or voluntary work. There are resources available to help people with MS maintain this area, if they want to. Apart from the legal support offered by the Equality Act 2010 and Disability Discrimination Act 2005, there are now teams of therapists and local disability employment advisors that may be able to help you maintain work if you want to. If you feel you would like to do other things with your life, there may be support to help you manage this process too. Ask for a referral to a Vocational rehabilitation team, an occupational therapist or go to see a disability employment advisor at your local Jobcentre Plus for further advice.


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Margaret:
I still have mild relapses, about one or two a year, which are treated with steroids, but my disability is obviously worse, (my neurologist says 6 on EDSS). What type of MS do I have? Relapsing remitting? Progressive of some sort? A mixture of two types? Is it all in my head? What most worries me is, are the outcomes different for each type?

Jeremy - Neurologist:
I wonder if you are transitional, ie in between! Regardless, you should treat the relapses and the residual problems on their own merit.

Susan - OT:
As regards the outcomes, most recent reviews of literature indicate that over time, it seems less important as to what type of MS one is diagnosed with as previously thought. What is more important is to be treated as an individual and have a full assessment of your needs and then specialist input to address issues.


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Beverley:
I am new to all this after being misdiagnosed for over eight years and now finding I have secondary progressive MS is very upsetting. I seem to be getting weaker - my legs after walking for a short distance can go like jelly and I need my walking stick constantly now. My legs and arms go numb and my hands feel cold, and the constant burning sensation in my spine is unbearable. I am on pregabalin and am just coming to the end of using diclofenac. These did not help at all. I am fed up and would like to know if there is anything that can be done to help me? I am awaiting results from a MRI scan which I had on the 20 April to see what is going on since the last one I had done in September 2010, but I feel like I am on my own here and would appreciate some advice. I am also very tired all the time and have just recently had to go part time at work.

Jeremy - Neurologist:
I suppose medically steroids would be worth trialling; then other options might be mitoxantrone or natalizumab (eg the ASCEND trial).

For burning, pregabalin to full dose 600mg/day; then if no good gabapentin up to 1200mg 3 times/day. Other nerve painkillers are amitriptyline, carbamazepine, etc.

Susan - OT:
Jeremy's advice regards the medical options is really important, but so too is to think about a physiotherapy and OT assessment of your needs. Better still, is an MDT assessment!

The pattern of your weakness in your legs is very typical of fatigue having impact on your mobility too so it may be worth thinking about some fatigue management input. Your local MS nurse, OT or physio may be able to help you with. The MS Trust also has an excellent fatigue book that you should try to order.

Simon - MS Trust:
We have just published a reprint of our book Living With Fatigue.

Evelyn:
I am like Beverley in that I have constant burning and pins and needles in my legs and upper arms. I am increasing my pregabalin dose. I'm now on 300mg a day but any more and I have headaches. I see my MS nurse, my physio and rehab consultant regularly. On a good spell my legs have the sensation of dissolving alka-seltzers! Some nights I think I am going mad!

Beverley:
I am currently taking 150mg 3 times a day of pregabalin. I was having side affects with gabapentin so I came off them. I cannot take amitriptyline as I have really bad side affects to them too. I did used to take citalopram but that was before they told me I had MS. I have also had three sessions of physio through the MS Society. Also, pardon me for being a bit thick, but what it an MDT?

Jeremy - Neurologist and Susan - OT:
Sorry, MDT means multidisciplinary team: a neurologist/doctor, physio, OT and nurse, sometimes others such as a speech and language therapist, etc. As you are already seeing a nurse, physio and rehab consultant, you seem to be sorted.

Jeremy - Neurologist and Susan - OT:
Don't forget, if pain is a problem, ask your neurologist or GP for help. It takes time to get treatments right but if the suggestions don't work, some local areas have pain clinics which can carry out more advanced treatment, so this might be something to discuss with your team.

Simon - MS Trust:
We ran a chatroom on pain in 2009 in which a pain consultant described approaches to pain management. Click on the link for the transcript.

Beverley:
I mentioned before that I have burning sensations in my spine, I also have pain to which shoots through t the front of me in my chest and it feels like someone is trying to literally pull out my spine. Last year I also had a vitreous haemorrhage, which to this day I do not know how it happened, and am also having bowel problems which they are saying is IBS [irritable bowel syndrome]. What more can be thrown at me? I am so fed up. I used to go rambling on 12 mile walks now I am shattered just walking round town.

Susan - OT:
Beverly, the problems you mention are not unusual for us to see in our multidisciplinary clinic. A team review would help to explore this further and would enable referral onwards to specialist services to help to address some of these areas.


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Cathy C:
Anything for or against for circulation boosters?

Jeremy - Neurologist and Susan - OT:
Hi Cathy, can you clarify what you mean?

Cathy C:
I use an exercise machine daily at home, but when away I become very stiff and more uncomfortable and my legs and feet swell. I am virtually wheelchair bound and wondered if a circulation booster machine would help when away.

Jeremy - Neurologist and Susan - OT:
Your experience is very commonly reported to us. Daily exercise is really important and some people with MS report increased stiffness when they don't exercise for a few days. It is worth seeing a physio for an exercise programme to be set up for you to do. An exercise machine or bike may be really good for this, but other stretches and movements can be helpful for the days that you can't use the exercise machine.

Susan - OT:
The MS Trust also had excellent exercise resources that you can order to help you set up a suitable programme at home. Show these to your physio to get a programme that is right for you.

Simon - MS Trust:
Susan is referring to Exercises for people with MS, which is a set of web pages containing simple routines designed by an MS physio, video clips of these led by Mr Motivator, some core stability exercise and also a relaxation session.


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Chris D:
My mum has been diagnosed with secondary progressive MS having progressed from relapsing remitting MS. She is only 58 but it has already severely limited her mobility and her confidence. She now walks with a stick and is very unsteady and weak on her feet. I'm sure she has been suffering from depression for a long time as well and I'm worried this isn't being addressed by consultants or GPs. At the moment her quality of life is low, spending all day in the house by herself with little physical activity or mental stimulation. I know of one bad fall she has had that she refuses to talk about. She never wants to talk about the condition or constructively discuss things that could be done to improve her life and never shares information from visits to the consultant or MS nurse. Has anyone had any successes in helping relatives cope with the condition and want kind of things have helped?

Jeremy - Neurologist:
I agree that depression can be under recognised. The good news is that it is generally responsive to treatment both drug based and psychologically. Has she had an open discussion with her GP?

Susan - OT:
I agree with Jeremy. There is good help available via the GP for depression, anxiety and low mood. See also the MS Trust leaflets on mood and depression which are really helpful. We also find that sometimes the experience of the family and the individual with MS differs in terms of wanting to accept help. In these cases, we most often start with referring the person with MS to the GP for an assessment of mood and then, if appropriate, will see then in a multidisciplinary team clinic for more holistic review of needs to look at all the contributing areas.

Simon - MS Trust:
We have a factsheet on depression. We also ran a chatroom on partners and MS where this sort of question was raised.

Beverley:
Hi Chris. My partner is helping me at the moment. We are both extremely shocked, but he just sits and listens and most importantly he is there for me when I need him and I think he knows when I am holding things back. So I say just be patient. She is probably in shock herself and will eventually open up to you.


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Les:
After I have had the steroid treatment, my symptoms get a lot worse and it can take two weeks before things settle down. Is this normal?

Jeremy - Neurologist:
Occasionally with steroids things get a little worse before getting better. I suspect it would start to improve over the next two to four weeks.


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Mike R:
I have had MS since '84. I managed to complete my military career but had to leave when secondary progressive MS was diagnosed. I've been on Betaferon since and have superb neurology support both at Leamington Spa Rehab and Walsgrave [Coventry], but particularly Mutual Support, the forces MS group, where we can meet and talk with you professionals about making most of life.

But now I'm looking for more treatment - where do I find about more about the parameters required to meet qualifications for treatments for fampridine and fingolimod, which are the treatments I'd like to get on to potentially improve walking speed and stop having to inject?

Jeremy - Neurologist:
Fampridine (Fampyra) is for walking difficulties. Fingolimod (Gilenya) is for reducing relapse rate in aggressive relapsing remitting MS. Both will depend on government or local funding arrangements.

John D:
I saw the reference to fampridine to aid mobility. Like a lot of people with SPMS, my mobility has worsened dramatically. What does fampridine do to help and how do you go about getting it (I believe that it is not NICE approved).

Simon - MS Trust:
We have information on both fampridine (Fampyra) and fingolimod (Gilenya) in the A to Z of MS.

John D:
Thanks for the factsheet on fampridine. I think I want to try anything that potentially helps mobility. Is this widely available? Can I get it prescribed through my MS consultant?

PinkLady:
How do I source a private prescription for Fampyra as my local PCT will not fund?

Jeremy - Neurologist:
It is true at present some PCTs are not funding. We hope this will change.


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David:
I think I have secondary progressive MS now although my neurologist has not diagnosed it - he unfortunately just ups my baclofen intake to 120mg per day! I've now taken it back to 60mg per day. I have no use of right arm and right leg. My last episode has seen my left leg become stiff and very heavy and I'm now in an electric wheelchair. I'm probably 7.5 on the EDSS scale. My neurologist just upped the baclofen! My MS nurse is good but just does what neurologist says. I wanted to try steroids to see if there was any benefit. It's good that I'm so mentally tough because feel totally let down by the neurologist. We've only got four limbs and I'm down to one and a half. Is there anything else?

Susan - OT:
Spasticity management is quite complex and will usually need a team approach.

Jeremy - Neurologist:
I think if there has been a clear acute-subacute worsening then firstly, make sure there is no infection, then it might be worth a pulse of steroids. Discuss this with your team.

Simon - MS Trust:
We have a few items that look at spasticity. There is a factsheet on spasticity and spasms and also the transcript of a chatroom on this topic. We have just published a book called Spasticity Triggers that looks at other factors that can make these symptoms worse. Additionally, we have a webcast on spasticity by Dr Val Stevenson.

David:
Thanks so for spasticity reading - it may give me some ideas. I have so tried to get Sativex and fampridine but not been able to on NHS. I can get them privately at £500 each per month :(.

I'm worried about contracture being in a chair - are there any exercises I can do? I do standing stretches when carers are here. Physio support here is very limited.

Susan - OT:
Yes! Exercise from a chair is certainly possible. Physios often give out programmes for people to do from a wheelchair. Keep going with your standing stretches when your carers are available as they are really important.

Kate:
David, for the last six years I have seen a yoga/shiatsu therapist and also had reflexology/massage quite often. They both do work on my legs, which stretches the muscles, and the yoga guy gives me exercises to do which help. The work they do also helps manage/reduce spasms.

David:
Thank you Kate, think I'll try the massage/reflexology. Worth a go and hopefully benefitting.

Simon - MS Trust:
There are exercises for stretching and also some done in a sitting position in Exercises for people with MS. We also have a book on posture for people who spend much of their day sitting.


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Muriel:
I am so glad to see this chat room on secondary progressive MS as I have only just discovered that my neurologist diagnosed me with this in January. I had requested a copy from my medical records for insurance purposes and found out that way. I was shocked but it also explained why I have been in a severe relapse without remission since August 2011.

It seems that the new diagnosis is leading my employers to dismiss me on grounds of incapacity after they received advice from an independent occupational doctor who liaised with my neurologist. His report suggested I be retired medically as I am unfit for any occupation according to his assessment. I am in complete darkness as to what medical retirement means. Having to deal with that uncertainty at the same time as having to deal with the complexity of my health condition is exhausting me and upsetting me. Can you be medically retired from your job and later on, work again? The finality of it all is frightening.

With regard the progression of my MS, I have found that the support I have received from the multidisciplinary team has been crucial in helping me to realise that I must now work hard to maintain my fitness, keep my body moving, have a planned out routine to manage fatigue and start using a wheelchair to allow me to experience life outside of my house.

I have been on the Tysabri treatment since January and it seems to have helped me reached a plateau. No new symptoms since March, so fingers crossed. I can't recommend enough getting support from physiotherapist and OT.

Thanks for all your comments here today. I feel a little bit less alone in dealing with the shock of this new diagnosis.

Susan - OT:
It is great that you are already linked with your multidisciplinary team and they may be able to help you further with your work issues. In addition to what you have already done, it is worth considering further advice regards medical retirement from the Disability Law Service. Also if you are the member of a union, they can also be very helpful. Your employer should provide you with a written explanation of what medical retirement means for you in terms of the potential to work (in paid employment) again in the future.

Lynn - MS Trust:
The Disability Law Service also has a specialist MS advisor.


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Justin:
Does the MS Society or the MS Trust, publish a leaflet on foot drop? If so, where can this be accessed?

Simon - MS Trust:
Justin, we cover foot drop in our A to Z of MS and also have a factsheet on FES, a device that can help with this symptom.


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Moira:
I've had secondary progressive MS for a few years now and I'm still trying to deal with the constant MS activity rather than relapses. Contracting ligaments in both feet are an increasing problem which my neurologist does not seem to take any account of. He has said that he does not think tizanidine is helping me much and has reduced this to 8mg per day. My rehab consultant has offered Botox but I wonder if increasing my pregabalin from 300mg per day would be a better solution. Any advice would be appreciated.

Jeremy - Neurologist:
In terms of anti-spasticity treatment, it is always worth slowly increasing one drug to the maximum before replacing it - perhaps come off the tizanidine and then after a few weeks gradually increase the pregabalin to 450mg/day then 600mg/day (split doses). Another agent is gabapentin. Botox though does have a role.

Susan - OT:
I agree with Jeremy. Think too about further physio input to help advise about the situation. A team approach may be useful to discuss therapy and medication approaches together with you.

Moira:
I have access to pain clinic, physio, rehab, etc but there is not and never has been a team approach. It often seems that as I am on Rebif (in my ninth year) everything is in a holding position and each acts quite separately.

Thank you for the advice, I will try altering my drugs and liaise with my GP re drug review as soon as possible.


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Joyce:
I am 66 years old and am now secondary progressive. I am able to walk a few strides but use an electric wheelchair. I have never been put on any of the ABC [disease modifying] drugs by the neurologists that I have seen over 26 years, which I don't understand. Can you enlighten me please as to why? Neither, apart from steroids, have I ever taken anything. I have always been unable to tolerate whatever is offered such as baclofen or gabapentin.

Jeremy - Neurologist:
Thank you for your question. As you say, increasingly new drugs are coming on stream. Currently they are for reducing relapse rate. We hope in the future there will be a new generation of nerve protector drugs - but it is early days and still a research question. As an example, the CUPID trial of cannabinoids will report in a few weeks. Worth looking out for (I don't know what it will say!). [The first results of CUPID were announced shortly after the chatroom and found that the cannabis based medicine used was no better than placebo at reducing progression in people with progressive MS]

Joyce:
May I ask if age is a factor when a neurologist prescribes a disease modifying drug? I am 66 years old.

Jeremy - Neurologist:
Age is not a factor.


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Sarah:
I was never told what type of MS I had until many years later, when it was described as secondary progressive. From what I have read about relapsing remitting MS, I don't think I ever had that type - in fact I'm sure I didn't. Is it normal for relapsing remitting MS to develop into SPMS? I always thought it was a completely different form of the disease.

Susan - OT:
Some people at diagnosis will be diagnosed with SPMS rather than relapsing remitting MS since they are no longer experiencing relapses after the initial presentation of symptoms. Some people are not even aware of their initial symptoms till years later when a neurologist sees them.

Within the population of people with MS, on average about half of the people who are diagnosed with relapsing remitting MS will develop SPMS at about 10-15 years. Your experience is quite common for us to hear.


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Moira:
Tinnitus is quite a problem and in recent years hyperacusis [over-sensitivity to sound]. A recent MRI scan to discount neuroma [a growth on nerve tissue] on the acoustic nerves has shown that MS is causing the problem in both areas of the acoustic nerves. Are there any common MS drugs which could be contributing to the tinnitus or pain caused by sound (everything is magnified ten fold)? Would I be able to obtain bespoke ear defenders through my rehab consultant?

Jeremy - Neurologist:
Tinnitus is difficult to treat - generally the best port of call is the local ENT department. There maybe a tinnitus association; I would not have thought the drugs would have caused it.

Moira:
Thanks Jeremy. ENT said nothing they can do as hyperacusis is caused by MS. I am now trying to help myself with practical ideas because noise has restricted me as much as the MS. Even the sound of the kettle boiling is too much.

Enjoy the rest of your day and thank you for your input.


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Kate:
Is dynamic visual acuity connected with the inner ear part of MS or can it be a pre-existing condition interacting with MS? It has come up due to test done by a physio in a research trial.

Jeremy - Neurologist:
Visual acuity normally refers to eyesight. Is it inner ear interacting with eye problems - not sure! Ask your physio maybe.

Kate:
Yes it is my eyesight when I'm in a car or watching television. It makes going out very, very difficult. I find it quite difficult when I'm told something is caused by MS, when it is a condition that people without MS can get. How do they know it is the MS? I sometimes wonder if it is an excuse not to treat. I find help with managing symptoms, whether MS, non MS or MS interacting with non MS, is often available through complimentary therapies, changes to my diet and self help through changing my attitudes, but no doubt Stephen will advise us more on that.

Stephen - Cognitive Behavioural Psychotherapist:
Yes, I understand the issue you describe, and it may be 'convenient' for health care professionals to 'say it's the MS'. But do you need to be more assertive in telling people? Sometimes if the message isn't being heard, it may be that the message needs saying differently.


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Jeremy - Neurologist and Susan - OT:
We are about to sign off. Thanks to everyone for lively morning full of interesting questions. Wendy and Stephen will take over from us now. Thanks to the MS Trust for hosting us this morning.

Simon - MS Trust:
Susan and Jeremy, thank you for this morning. A lot of useful ground covered I think.


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Wendy - MS Nurse:
Hello everybody.

Stephen - Cognitive Behavioural Psychotherapist:
Hi, I shall be in this chatroom till 4pm to hopefully answer any relevant questions about emotional issues.

Simon - MS Trust:
Hello Wendy and Stephen, welcome to the chatroom.


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Colin:
It started with an eye going out of focus. After many years going to the eye clinic at Worthing and doing everything I wanted to do, I now cannot do anything. I have not worked for some time. I have secondary progressive MS. I cannot stand therefore cannot walk. I use a manual wheelchair indoors and an electric one outdoors. I do not drive anymore, my MS (or should I say my family's, it affects the whole family) affects mainly my left side. My left hand has dreaded pins and needles feeling, my left foot feels as though the nerve ends hang out the bottom of my foot. I have a Conveen [a penile sheath made by Coloplast] for my urine problems, I have a commode that goes over the loo. I spent lots of money on an extension to my house so I could sleep downstairs, when will it end?

Stephen - Cognitive Behavioural Psychotherapist:
I'm sorry to hear of the problems you are describing. Without meaning to sound trite - there is a real danger that we only focus on the things we can't do - and there is a serious implication to our emotional wellbeing in doing that. So can you focus on the things and activities that you can do?

I noticed that you said "my left foot feels as though the nerve-ends hang out the bottom of my foot". There is a danger that we can exacerbate our symptoms by the way in which we frame them. Imagery can be very helpful in finding a different way to describe the pain to ourselves. For example, I used to describe the sciatic pain I had in my ankles as like a 'red hot poker', which created an emotional reaction, but describing it as 'sunburn' made it 'feel' very different.


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Julia:
I have secondary progressive MS. I went to my hospital last week as I am worse and was told to "plod on with the pain". I can't tolerate gabapentin or pregabalin so was told there is nothing else. I have had MS for 28 years and secondary progressive for eight.

Wendy - MS Nurse:
Obviously I don't know the full details but I wouldn't be happy to 'plod on with the pain'. Have you asked for a referral to a pain clinic?

Julia:
No, I haven't. Is that through my GP?

Wendy - MS Nurse:
Yes. Most hospitals will have a pain clinic attached to them. I would encourage you to get a referral as chronic pain can be so distressing.

Julia:
Thanks Wendy, I will try.

Stephen - Cognitive Behavioural Psychotherapist:
Hi Julia, what does the pain mean to you?


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Geoff:
In the blurb about today it says that some people can find secondary progressive MS like a second diagnosis - which is very true. Relapsing remitting was a challenge but I felt I was getting a handle on coping with it. As things began to get harder, it was decided that Rebif wasn't working anymore and I felt was dropped into a whole new world.

Stephen - Cognitive Behavioural Psychotherapist:
What has actually changed for you?

Wendy - MS Nurse:
Hi Geoff, you coped once and you will cope again. As you know, Rebif only helps to stop relapses. Why put yourself through three injections a week if you don't need to? Try to look at it as just a new phase of the same disease. At least now the disease will be more stable and you won't have to worry so much about potential relapses.

Geoff:
Physically, I've become slower and stiffer. No sudden shift, just a gradual build up. Emotionally it was quite a shift. 'Progressive' sounds worse, even though it's only a word for what has been happening for a while. It just made me feel like at was at the beginning of something all over again.

Stephen - Cognitive Behavioural Psychotherapist:
This is the thing though - are you at the beginning? Or can you frame this as it being a different phase of the same disease? Therefore a useful question to ask is what has actually changed?

Geoff:
That's very true, but it's sometimes hard to take it on board when you're feeling low and vulnerable.

Stephen - Cognitive Behavioural Psychotherapist:
What thoughts are creating that feeling of being low and vulnerable?

Geoff:
I'm not given to low moods all the time, in fact I think I cope pretty well considering. But at times when the frustration of not being able to do things anymore or the weight of fatigue gets on top of you, the idea of having something described as 'progressive' can seem a particular burden.

Stephen - Cognitive Behavioural Psychotherapist:
So it's the terminology that is causing you distress? It is just a word - the implication of the word is up to you. Try and frame it differently.

Stephen - Cognitive Behavioural Psychotherapist:
Please also be aware of the dangers of saying to yourself things along the line of 'not being able to do things anymore'. Perhaps you could concentrate on those activities that you can do. One of the dangers is that people kind of throw the baby out with the bath water and believe they can't do anything. This is potentially very damaging for them emotionally.

Wendy - MS Nurse:
This is more Stephen's field, but it seems that you are worrying about the word progressive. When I have problems, I change the word in my head from 'problem', to 'concern'. It makes it seem much less threatening. Can you think of an alternative word?

Stephen - Cognitive Behavioural Psychotherapist:
You also mentioned the weight of fatigue being problematic for you. Are you able to plan, pace and prioritise your activities?

Simon - MS Trust:
The book Living with Fatigue might be useful for this.

Geoff:
I try, but some days it beats you. As I say, I'm not always as down as I seem to be sounding, but on the bad days it can be a struggle.

Stephen - Cognitive Behavioural Psychotherapist:
Again, try the re-framing. Are they bad days - or simply a couple of bad hours? Never underestimate the power of what we say to ourselves. There is a very real danger that we can unintentionally turn bad moments into bad weeks etc.

Part of CBT (cognitive behavioural therapy) looks at the link between how we think affecting the way we feel and behave. Try and tune into your thoughts about the transition, eg what does it mean to you, and then attempt to be realistic about it. CBT isn't about the 'power of positive thinking', but encourages us to check the accuracy of our thought processes. There can be a danger that we catastrophise about the future or worry about things that may never happen.

Wendy - MS Nurse:
You sound as if you are doing very well. I know it sounds a bit daft, but I tend to tell people to plan for their worst days, ie if you had a really bad day what would you do? Who can you call? If you have a plan in place, bad days don't seem so frightening. You sound like you would cope.

Geoff:
Thank you both, this has been useful.


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Bob:
My main problem seems to be fairly frequent double vision which appears to be caused by loss of control of the eye muscles. The next thing I have noticed is a feeling of numbness in both legs. Mainly in the lower part from the knees down but occasionally spreads to the upper legs as well. So far these problems are more of a nuisance, but is there any way I can stop or slow down the progression?

Wendy - MS Nurse:
As I don't know enough details about your condition, I don't feel it would be useful to discuss specific symptoms in detail. There are a number of drugs currently undergoing trials looking at slowing progression. I always urge patients to attend their annual appointments, even if they sometimes feel they are a waste of time, so you don't lose contact with the services. We need to know about you and your MS, for when future therapies may be available to help you.


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Mark:
I fell a couple of times in the first few years of the illness and then in the past three years I have fallen at least seven times, All I know that my legs just collapse under me and a few times falling out of bed. I seem to bounce off floors well and avoid hard objects. I use to be an engineer and I interested to know how the illness goes. That is the way I took the transition from relapsing remitting to secondary progressive MS!

Stephen - Cognitive Behavioural Psychotherapist:
Wendy wrote a MS Trust booklet on falls, which no doubt Simon will signpost you to.

Simon - MS Trust:
Stephen beat me to it. The book that Wendy wrote for the MS Trust is called Falls: managing the ups and downs of MS.

Wendy - MS Nurse:
Can you explain a bit more about how being an engineer helped you cope with the transition?

Mark:
I was a noise and vibration engineer - I had to discover how the noise or vibration was transferred, mainly in cars. So the illness I am treating it in the same way. Yes I have fatigue in the afternoon so I do anything I want to get done in the morning and rest in the afternoon.

Stephen - Cognitive Behavioural Psychotherapist:
It appears you are trying to work with your MS and not against it - the idea of pacing your activities as you are doing, is it working for you?

Mark:
Yes, I know that I have a very limited energy so what I have got, I do the things I want to do. I do not think too much of what I am unable to do.

Stephen - Cognitive Behavioural Psychotherapist:
Would it help your emotional wellbeing to actually acknowledge what you are able to do? As I mentioned in earlier posts, there is a danger that we solely focus on what we can't do.


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Dave:
I took part in a Sativex trial which worked well for spasms and pain, but when the trial ended funding for further treatment was refused. Why, when there is a drug that will improve the life of a person with chronic pain 24/7, am I not allowed to continue with the treatment that works? Without this drug I was unable to return to full time work, suffered from increased fatigue due to even more broken sleep and there is no prospect of thing getting better.

Are there any drugs being developed exclusively for MS neuropathic pain? I understand that I am not going to get better, in fact progressively worse is a more certain outlook. I am just left so frustrated.

Wendy - MS Nurse:
As you probably know, in the UK it is very difficult to get a drug unless it has been approved by NICE. I have heard rumours that the drug company making Sativex are making another appeal. Fingers crossed. As I mentioned to someone earlier in the chatroom, have you been to a pain clinic? In my experience we can't always get rid of pain completely, but the majority of patients get it down to a manageable level.

Simon - MS Trust:
A previous chatroom looked at pain and included (in general terms) a description by a pain consultant of how he might approach treating symptoms.


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Andy:
I have done the whole psychologist study regime (five weeks in total). The psychologist suggested I needed to talk to a psychiatrist, but in the current NHS this is looking less and less likely. I have been struggling lately to convince myself I want to fight the depression, fatigue and pain much longer. Does anybody have any help regarding access to a psychiatrist? I have some private health insurance but I doubt they will pay as it's MS related.

Wendy - MS Nurse:
Are you sure you need a psychiatrist? Psychiatrists are for people with very different problems to the coping and emotional problems I see daily as a MS nurse.

Stephen - Cognitive Behavioural Psychotherapist:
Hi Andy, have you specifically looked at CBT? There is a growing body of evidence to suggest it can be very helpful for the transition. There is a very useful book by David C Mohr called the Stress and mood management program for individuals with multiple sclerosis that you can buy from places like Amazon.

Simon - MS Trust:
Other booksellers are available.

Andy:
I can only go by what the psychologist recommended following the five week assessment. It was he who suggested the psychiatric help. Should I ignore his advice? I have been coping with MS for nearly 20 years now, my levels of depression and my bleak days have never been as bad as they are at the moment. I am uncertain if there is any medical solution, and yes, you are right, this is not a typical MS symptom.

Wendy - MS Nurse:
If the psychologist has recommended a psychiatrist, then at least go for the assessment and take it from there. You should be able to access a psychiatrist through a GP referral. Why didn't the psychologist write to the GP suggesting a referral? You shouldn't need to pay if you need it.

Andy:
Stephen thanks for the book recommendation. CBT is a great idea, but in today's NHS it is just not freely available. I think I am a little to far down the pecking order to seek help through the NHS who have far more serious patients than me to deal with. The CBT book advice is useful.

Wendy - MS Nurse:
I'm a bit concerned about your comment of being way down the pecking order. There will always be people worse off, with MS you sometimes have to be selfish and think that 'I can't fix them, so I will just try and sort myself'. Don't give up and fight for help if you need it. Do you have an MS nurse?

Stephen - Cognitive Behavioural Psychotherapist:
What do you think is driving the bleak days and the depression?

Andy:
The fact that I was once very good at everything, and have slowly sunk to the type of creature that Bullingdon Dave [David Cameron] would have terminated. I am the ultimate drug addicted (all prescription by the way), grossly obese, alcoholic drain on society. Cleaning myself, dressing myself and ever leaving my house have turned into a carnival event. Being anything other than a burden to those around me is impossible. My memory, cognition and speech are also in serious decline.

Stephen - Cognitive Behavioural Psychotherapist:
With the Improving Access to Psychological Therapies (IAPT) initiative - I'm afraid there is rather a postcode lottery for NHS CBT. As an example in parts of the Midlands you can access a CBT therapist within a few weeks, the neighbouring county it can be eight months! It might well be worth your while going back to the GP - and please do so if you are at all concerned about the likelihood of harming yourself.

Andy:
I live in North Bucks, as far as I can see there is no help of the sort you outline freely available here.

Stephen - Cognitive Behavioural Psychotherapist:
OK, you are painting a picture of what you can't do - what can you do? Without sounding condescending, have you actually tried to see what's available? Often people make assumptions.

Andy:
Stephen I can't do much at all anymore, even putting my socks on takes half an hour...!

Stephen - Cognitive Behavioural Psychotherapist:
Even if it takes you half an hour - you're still doing it. This says to me you have determination. Is this something you can build on?

Wendy - MS Nurse:
I know this is an MS Trust chatroom, but the MS Society do an excellent publication on Living with the effects of MS which I find useful to normalise the emotional journey that is MS.

Simon - MS Trust:
Don't apologise, Wendy - whatever works for people is good.

Andy:
What you are writing is great, and the type of advice I would offer to folks with my current bleak mood. Right now however I am in a very dark place. My father committed suicide so I know the trail of pain it leaves behind. My problem right now is like the beetle in Kafka's Metamorphosis - I am now hiding under the bed full time.

Stephen - Cognitive Behavioural Psychotherapist:
Is hiding under the bed helping? How we behave affects the way we think and feel. Whilst avoidance of situations is so common, it actually doesn't change anything and can actually maintain problems.

Andy:
No Stephen, it was the final place the beetle ended up, having used up it his family's goodwill.

Wendy - MS Nurse:
I think that the fact you are on the chatroom and talking to us shows that deep down you do have some hope for your future. Do you have any family support? Do they know how you are feeling?

Andy:
Stephen, as of last month I don't even have a neurologist anymore. The nearest MS nurse is 40 minutes drive away and she has PLENTY to do already. My GP is a nice guy, but it's rather sad to see his face drop every time I turn up to be bled. He has spent his life trying to cure people, he just doesn't have much to offer an old crip like me.

Stephen - Cognitive Behavioural Psychotherapist:
Just because your MS nurse has plenty to do, or your GP's face drops, does that mean that you don't need the assistance they can offer? If you do, then should you be more assertive. As I mentioned earlier, if people aren't hearing the message then perhaps it needs to be said differently. If you do the same thing, you WILL get the same result.

Wendy - MS Nurse:
Personally I think to get diagnosed and have treatments such as disease modifying therapies you need a neurologist. To cope with progression you are probably need a neuro-rehab consultant. Ask your GP to refer you to one. I don't know why you don't have a neurologist, but anyone who has a long-term neurological condition should be seen by someone in the neurology team. Even if it is only every couple of years.

Stephen - Cognitive Behavioural Psychotherapist:
Do you know that goodwill is being eroded, or do you just think it is? Just because you believe something, it doesn't mean it is true. Thoughts aren't facts. They may sometimes be true, and sometimes they may well be very skewed. The secret is to be able to determine which is which.

Andy:
I have had a neuro-rehab consultant for 15 years. I moved here two years ago and it became impossible to get to the old group. My GP thinks I am fine without one. Which neurology team are you referring to?

Wendy - MS Nurse:
Anybody who works for you really, whether that be a neurologist, neuro rehab consultant, neuro physio, MS nurse, etc. I know you said your MS nurse is busy, but if they don't know there is a problem they can't help.

Kate:
Hi Andy I've just returned after a rest and been reading through the posts. I was in some very dark places a couple of years back. I don't know what to say that may help you but please keep reaching out. At times I phoned Samaritans and told them how bloody awful MS is and all the other things it brought. Then I went through a phase when I'd phone them before someone visited me to say all the stuff that needed to get out of me and then be in a slightly better mood before the visitor came. In the end it is people that make the difference. I think our friends and family grieve as well and take time to adjust to the new additional role as carer.

Andy:
Thank you, Kate.


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No name given:
A book I found helpful was Thomas Moore's Dark Night of the Soul: A guide to finding your way through life's ordeals.

I find it quite difficult when health professionals only mention depression - there is a much richer mix of emotions going on. Frustration has already been mentioned above. There is also grief - the grieving of the competent me who had a job, could drive, travel where I wanted, wander along the sea shore, friendships that change. The grieving leads eventually to an acceptance and letting go, so a new competence can develop, managing MS and making a new meaningful life which for me now is very home based. All a long process and been blessed by help from a variety of people. Just one I'll mentioned is the brilliant OT I met when first diagnosed, from whom I learnt people are not disabled it is their environment. Find out what you want to do and what is needed to achieve it, and if it can be done then adjust your aims. MS just requires much adjusting of aims.

I also learnt through Emotional Logic that emotions have a useful purpose (even anger) and that it is possible to harness their energies instead of being drained by it.

Stephen - Cognitive Behavioural Psychotherapist:
To the poster regarding acceptance - I entirely agree! .


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Mickey W:
I have had MS for about 18-20 years. I only started to get problems three years ago and am now secondary progressive. Are their any medications I can take? I am only on baclofen which seems to do nothing.

Wendy - MS Nurse:
Baclofen is for spasm and stiffness. Medication for SPMS tends to be symptomatic so it depends what your symptoms are.

Mickey W:
I am still mobile but limited in distance as things start to go wrong after a few hundred yards and have to stop an get myself together. I was prescribed baclofen for stiffness but it doesn't seem to do anything.

Wendy - MS Nurse:
After a few hundred yards, what stops you walking? Pain, fatigue, weakness?

Mickey W:
Brain fog and my leg just not responding. I have never been offered any medications before so am I just at a phase of this illness that I have to just get on with it the best I can. Is it worthwhile still seeing my neurologist and MS nurse?

Wendy - MS Nurse:
It is always worth keeping in touch with the neurology team. It may be worth asking them if they are doing any fampridine (Fampyra) trials in the future. If so, you might be eligible for an assessment. Fampridine is a potential treatment to improve walking in selected patients.

Simon - MS Trust:
We have a factsheet on fampridine. It seems to be a difficult drug to get hold of at the moment, but it is worth having the discussion with your neurologist.

Mickey W:
OK, will do thanks.

Wendy - MS Nurse:
It might also be worth seeing if you can get a referral to a neuro physiotherapist.


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Pat:
Hi all, great chatroom subject. Just one question - after my first CIS [clinically isolated syndrome] at 35 I went 20 years through various specialists and what we now know were relapses before a possible MS diagnosis at age 49 and a clinically definite diagnosis at age 53. As I now have issues most days and have felt myself in slow decline since the 'possible MS', is it possible to transition straight to secondary progressive MS with this history and how will I know having had no time to access the relapsing remitting MS stage? Of course getting older colours this too lol.

Wendy - MS Nurse:
CIS is always tricky and 20+ years ago more so without the benefit of modern MRIs etc. Forgive me if I am making assumptions that are incorrect, but I'm guessing you're first relapse (CIS) was quite bad, with pretty mild 'relapses' in between, which always makes diagnosis harder. I have never known anyone go straight into secondary progressive MS. Is it possible you may have had a milder form of relapsing remitting MS for 20 years and now think you have SPMS?

Stephen - Cognitive Behavioural Psychotherapist:
Evidence gathered from epidemiology studies indicate nearly 10% of people with relapsing remitting MS reach the SPMS stage after five years, which increases to almost 25% at ten years and 75% at 30 years. So to back up Wendy's comments, it could be possible that you had relapsing remitting MS but it wasn't diagnosed.

Wendy - MS Nurse:
One other thing, we all get so hung up on wanting a label for our problems. Does it really matter what the experts call it? Knowing who to call and deal with symptoms on a daily basis is what counts.

Pat:
You may be right. The CIS was optic neuritis. I had some mainly sensory relapses and then in 2003 I had optic neuritis again, which led to the possible diagnosis. But the pattern of lesions on MRI were typical MS so the neurologist told me to 'to sort out my finances' like insurance etc as the next appt would be a diagnosis.

It was 2008 when I had a relapse which took my mobility and I was unable to walk for a number of weeks. This is still an issue as are the eyes with optic neuritis, uveitis [inflammation of the middle layer of the eye] and also double vision caused by weak muscles in one eye.

My question really is, with this history is SPMS possible?

Wendy - MS Nurse:
With your history of long periods in between relapses it is impossible for me to say. Even with an MRI with gadolinium enhancement during an attack, you could still argue it could be a relapse or SPMS with relapses. What does your neurologist say? Sorry to be blunt, but why is the label/stage so important to you? Will it change anything to do with treatment or how you see yourself?

Pat:
I think I feel very bitter about all the years of misdiagnosis and the fact that I often blamed myself for these unexplained episodes which led to me pushing myself more than most. First to degree then MSc then PhD. Whilst working full time too. Wearing the label of MS is difficult after all this time and I think I am trying to make sense of what and when. Should also say my neurologist apologised for the original 'mild MS' label and now says relapsing remitting MS, but I haven't seen him since 2008.

Wendy - MS Nurse:
I do feel for you. I'm guessing you had 20 years of not knowing if you were going to get MS, or just going mad. Pushing yourself physically and mentally has probably helped you stay as well as you have. Use it or lose it as they say. Sometimes the hardest part is the not knowing but doctors don't always have the answers. They do the best they can at the time, with the knowledge and equipment available. In another 20 years people will probably look at what we do now and be horrified!

Stephen - Cognitive Behavioural Psychotherapist:
Pat, how is it helping you by being bitter about things that did or did not happen in the past? There is a danger that we have one foot in the past, and one foot in the future, which means we tend to ignore the present. I'm not suggesting that you are doing so, but please do not allow MS to define who you are.

Wendy - MS Nurse:
One other thing. Keep in touch with your neurology team. Why haven't you been seen for four years?

Pat:
It's just the neurologist that I haven't seen. I do see my MS nurse every four months. What you both say makes sense but it does feel very frustrating! It wasn't 20 years of not knowing if I was going to get it. I was not told what it was they were looking for and so had no idea of what might be wrong. I saw many, many specialists over this time. I know you are right feeling bitter won't help but it's very difficult not too.

Wendy - MS Nurse:
Pat, I'm about to break my number one rule of self-disclosure. I have a chronic condition that wasn't diagnosed for a long time. Probably like you, I was desperate for a label or diagnosis to validate my symptoms. It doesn't change my symptoms now knowing what it's called and I still wonder whether they got it wrong! I have found that the only way to deal with it is just to accept it for what it is.

Pat:
Wendy, I so appreciate that. I know how hard self disclosure can be. I work as a university lecturer and try hard not to do that with my students. I think my problem was that I needed a label as things were progressing and I thought disclosure at work with a label would help me remain in work with adjustments. This has not been the case and the label and disclosure at work made no difference and I am still having to consider retirement on health grounds. You are right a label doesn't always help.

Do I assume then that the secondary progressive MS label is one of hindsight again?

Wendy - MS Nurse:
This is my last post as my stint ends at 4pm. The stage and type of MS tends to be a retrospective diagnosis most of the time. Do you have a works occupational health department that could do an assessment? Also Access to Work is worth looking at. Good luck.

Pat:
Thanks so much. I have been down all of those routes in the last four years. The issues are around the line managers not implementing the adjustments that have been proposed by the OH department and OH GP too. Access to Work have helped loads with equipment but on the ground floor what matters are the little things that a thoughtful manager can do. Mine have chosen not to and after 25 meetings in the last 18 months the stress has become too much. But I really appreciate your thoughts.


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Karen:
This chatroom is great for anyone newly diagnosed. Thank you for that. But it doesn't give others here the one thing we really need - HOPE. No cures. Nothing on the horizon. Just NOTHING! Only anyone with MS can ever even begin to understand the total despair, dark thoughts of a welcome 'end to it all' the sure knowledge that things are only ever going to get worse.

Stephen - Cognitive Behavioural Psychotherapist:
Hi Karen. How do you know things are going to get worse? How do you know there isn't going to be a change in treatment? What is known is that research is now being conducted in secondary progressive MS, but little is known about the emotional cost. This is something I am looking at for my doctorate.

Kate:
Before MS was ever mentioned to me I had a colleague whose wife was in her 40s and had secondary progressive MS. She could not speak and hardly move. I only ever saw her in a chair by the window. Now I have MS there are two things I think about due to her - there was a deep peace around her, and serenity. This helps me accept the pain and limitations. People visited her because of that peaceful atmosphere. When MS was first mentioned to me I wondered how she went from being a dentist to that still person. I understand more now and am still learning - but I'm note sure it is possible to describe MS from the inside.

Stephen - Cognitive Behavioural Psychotherapist:
Hi Kate, we do need to find acceptance - perhaps this is more important than hope. 'It is what it is' can help us to accept. Holding out for what 'it might be' may lead to despair as it may not happen.

Karen:
If there is ever a treatment, it will take years to get through the various trial stages, then NICE won't let the NHS provide it.

Wendy - MS Nurse:
Hi Karen, sorry that you feel that this chatroom is lacking 'hope'. There is always hope. I try not to give the people I see false hope, eg a breakthrough cure that reverses all progression will be available tomorrow, but there is always hope. Our neurologists are always coming back from international conferences with details of trials etc. Admittedly, many are stopped for safety reasons, but would you want to take something that could potentially make things worse? I encourage my patients to eat well and exercise within their personal limits, so that they are in a position to benefit from any potential new treatments in the future. I look forward to the day when I lose my job because MS is cured.

Stephen - Cognitive Behavioural Psychotherapist:
Which does mean that how we view the condition, which ultimately is our own choosing is SO important. I didn't want to give false hope, but there is more work undertaken in this area.


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Stephen - Cognitive Behavioural Psychotherapist:
Dear all, many thanks for your contributions to this afternoon's chatroom. We're passing the baton over now.

Wendy - MS Nurse:
Goodbye everyone and don't give up.

Simon - MS Trust:
Wendy and Stephen - thanks for your contribution to an interesting and challenging afternoon's chat.

Vicki - MS Nurse:
Good afternoon.

Simon - MS Trust:
Hi Vicki and Alison, welcome to the chatroom.

Alison - Rehab Nurse:
Hello all. I've been reading some of the 'chat' over the last half hour. I read both hope and despair. I wanted to enter the room with something positive. As a rehab nurse I tend to meet people in transition and stay with them. Patients never cease to amaze me. Everyone has 'downs' and most people despair but almost no-one stays there and those few that do it is usually because of something other than MS.


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Karen:
I would willingly try ANYTHING to make MS go away - even if it killed me. MS has taken my life anyway.

Vicki - MS Nurse:
Karen, that is a powerful sentence. Does it feel that NOTHING will give you your life back?

Alison - Rehab Nurse:
Many people express a willingness to take risks to make their MS go away. Unfortunately you will never be taken up on that. MS may have taken the life you planned but not your life. It's tough, very tough, but you need to find other life choices that the MS can't stop.

Karen:
Nothing can ever give me my 'life' back.

Alison - Rehab Nurse:
I don't know what life you planned - this often makes a difference to the impact of MS - but are there not some things/people around you that are part of the life you planned?

Vicki - MS Nurse:
You are right nothing can bring back the life you had or the life you expected to have, but you still have a life ahead. I guess it is you who will decide how you want that to be and who you can get to help you to get the best out of your life yet to be lived. There are plenty who are so willing to help you out for sure.

Karen:
MS has robbed me of everything I had planned. I'll finish now. All I ever seem to do is moan about life, but not without reason. I have to spend my entire day sitting on a commode, not because of incontinence but because I have no toilet I can use. I have to spend all night with incontinence pads because I can't get off my mattress (got no bed). I can't even get out of my own house. MS has caused all this.

Vicki - MS Nurse:
MS is a thief but don't give it permission to steal from you anymore, whatever it may bring. Find the help that will bring you back to life and make you more secure about your future. Give it a try.

Alison - Rehab Nurse:
If you are still there, never apologise for moaning - you have to tell it as it is. Have you any health or social care professional helping you? Your situation sounds terrible - but there are things that can be done.


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Nicola:
I would really welcome advice on trying to live with secondary progressive MS and especially tremor which is causing me increasing problems with mobility and dexterity.

Vicki - MS Nurse:
There is a lot written about managing MS when it is in the slower progressive phase and about managing tremor, which is one of the trickiest symptoms for sure. The MS Trust publications will give you information and the rehabilitation team and therapists should also work with you on the position you are in for any activity, how you sit, cooling your forearms, medication plus a range of other things that might reduce the impact of tremor on your daily life.

Alison - Rehab Nurse:
Living with secondary progressive MS is a different experience to relapsing remitting MS. You learn different approaches and a neuro rehab team can help with this. Tremor is a difficult symptom, and medicines don't always help. OTs and physios working together may be helpful.


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Guy:
I recently read an article about some very promising results using modified CRMP-2 gene therapy which claims to stop the progression in MS. It is a long way away from being a confirmed treatment and part of the process for that will of course be clinical trials. My question is, are there any such trials being planned in the UK?

The problem/frustration for me (and others no doubt) is the length of time it takes from when you hear about such potentially good treatments to when they will be actually available so getting on a trial may be the only way to get this treatment before the condition progresses past the point where it would have been effective in the first place.

Simon - MS Trust:
CRMP-2 is a protein that is associated with nerve damage in MS. The study that has recently been published (the abstract of the paper and a news item are available) showed that blocking the effect of the protein could stop progression in an animal model of MS. This is still relatively early work and not all things that work in animals are proven to work when used with humans.

Vicki - MS Nurse:
I do not know of any trials planned at this time for the UK. Safety is the reason for time - suggesting potential benefit in the lab is a long way from being safe or effective for you to be able to take long term. You do not say how your MS at the moment and it is extremely frustrating for sure but be sure you are not living a waiting game and that you are investing in yourself here and now.

Alison - Rehab Nurse:
The others have answered your question really but I wanted to add, keep looking for treatments but keep getting on with life.


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Ruth:
I have had constant symptoms of burning, stinging, tingling neuropathic pain and stiffness in my muscles more on my left side since 2008. Before that I had intermittent tingling and pins and needles on my face on one side going back as far as 1996. I have lesions all over my brain. The neurologist say the outer ones are probably ischemic changes [restriction in blood supply to tissues] due to aging but the inner ones near my ventricles are more likely to be MS. That neurologist has now left and the new one doesn't want to commit himself, but meantime I attend annual check ups and have repeated scans and just get my symptoms treated with drugs - pregabalin, duloxetine, baclofen and nortriptyline. I find it very frustrating that there is no clear diagnosis when I have had symptoms for four years non stop.

Alison - Rehab Nurse:
This must be frustrating beyond belief. I rarely say this but you do have the right to a second opinion to seek a diagnosis. Also, if you can access a neuro rehab service they should be able to work with you without a diagnosis. It's important to get all the help you can whilst a diagnosis is made - please don't put you life on hold.

Vicki - MS Nurse:
Horrible symptoms by the sound of it. It may be a mixed picture - there may be two diagnoses that are responsible for shared symptoms that could easily arise from demyelination or ischemia. MRI gives some information but not all. You could perhaps ask for another opinion but what is really frustrating you most? Is it that your symptoms are not well controlled, or that you are not getting a clear diagnosis or that you do not have enough information or options to feel better?

Ruth:
I do go to neurophysio for ten sessions twice a week, twice a year. They keep being moved into smaller premises as it is not an acute service but we value them very highly and would not cope without them. I have got the symptoms better under control since I started taking clonazepam for spasms and the duloxetine has sorted out the pain mainly. The frustrating part is the diagnosis.

Alison - Rehab Nurse:
I know it sounds strange, but as the symptoms are coming under control, what aspect of having a diagnosis is important to you? This does vary from person to person.

Ruth:
Yes the rehab helps me, but it is sometimes quite difficult when I see people so much worse off and then I feel a bit guilty for being more mobile. But the pain and stiffness aren't the only symptoms. I have no Babinski reflex on either foot, my balance is rubbish and I veer to the left, and at night I stumble because I can't see where I am putting my feet. The only good symptom is that my legs don't tell my brain that sea water is cold and the message received is that it is hot, so I find swimming in the sea quite exhilarating. In the Med that is, not round here!

Alison - Rehab Nurse:
Ruth, please don't feel guilty. Everyone's problems are different. What we see is the tip of an iceberg. I like the idea of the Med feeling hot!

Vicki - MS Nurse:
Having guilty feelings doesn't make anyone else feel better so you can bin them if you want - not worth the effort they take. Keep a watch on your loss of temperature sensitivity so that you don't cause yourself any damage, and the problems you are living are pretty hefty I am sure.

Ruth:
Yes it's bizarre isn't it, because it's only 19°C at the moment. I knew I had a problem when the neuro put something hot and something cold on the back of my legs and I couldn't tell her which was which.

Vicki - MS Nurse:
Swimming is a really good exercise for so take advantage of your switched about sensations.

Ruth:
Does anyone else go for a massage and feel great and then find three hours later that everything has tightened back up again especially going down stairs?

Alison - Rehab Nurse:
I wonder what you do after a massage? You sound a busy lady. Do you rest afterwards to gain maximum benefit?

Vicki - MS Nurse:
Trying doing some sustaining stuff like Pilates, Alexander Technique, relaxation work or yoga. This will help you to keep the benefits of massage for longer.

Ruth:
Thank you for that tip.

Vicki - MS Nurse:
Ruth - it is my pleasure and there is some evidence that techniques like these and things like mindfulness bring very real benefits to people with MS.


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Mark:
I was diagnosed with relapsing remitting MS some 22 years ago now with little change until the last two years when my MS seems to have woken up and I've had attack after attack. My biggest problem appears to be fatigue at present combined with a good dose of dizziness so I use a stick to get about without falling. My problem now is that it keeps getting worse and so to me it just gets harder and harder. On the plus side, my employer is great and I still work full time with the support of Access To Work who provide me with a daily taxi to work.

Vicki - MS Nurse:
I think that your description of your MS having 'woken up' is a really good one. Can I just check you have had a really thorough screening for any infection?

Alison - Rehab Nurse:
I presume you are under the care of a neurologist. If not you really should be. Right now it sounds as though you also need a multidisciplinary approach (rehabilitation) - can you access this? It's good to hear the plus side, especially that there are some good employers about. The MS Trust has an excellent publication on fatigue.

Simon - MS Trust:
We have just published a reprint of our book Living with fatigue.

Vicki - MS Nurse:
Alison is absolutely right, you should have a multidisciplinary approach that involves specialist nurses and therapists. It is important to both deal with the here and now issues and also prevent you developing any avoidable problems later on. Medication may help the dizziness if it is a recent problem, but your rehab team would assess and help to sort that for you.

Mark:
I have had a very thorough check for any infections as back in late January I had a course of alemtuzumab which went well. At least I didn't have any problems with it and was back at work within the month, part time at first but building to full time over the period of six weeks or so. Maybe I was hoping for too much from the treatment as my neuro guy was - he thought I would be as right as rain. But I will take your advice and talk with them again as it seams like its better to do so than let things get worse. They are a very helpful bunch at Frenchay [Bristol]. I just tend to avoid hospitals and doctors in general as that's were ill people go lol.

Vicki - MS Nurse:
I share your antipathy about hospitals and I work in them! But please go and get fully reassessed.


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Jules:
I have relapsing remitting MS. I've not had a relapse for two years, however I did have one eight weeks ago, which was treated with high level steroids for five days. I do feel as if my mobility has got worse over the last year. How do I know if it has developed into secondary progressive?

Alison - Rehab Nurse:
Hi Jules, you may be in transition but you need to discuss this with you neurologist. The point really is not what you call it but what would help you. Sounds like you need a neurophysio to me.

Vicki - MS Nurse:
It may be a transition to the slower secondary phase but it is important to make sure that you are properly assessed by the neurology rehab team and that, as Alison has said, what you are experiencing rather than the words you might hear, are correctly managed.


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Kate:
Neuroplascity is mentioned in some MS literature. Is it being used in practical ways yet in rehab? Last year I noticed I had lost the normal walking movements of legs and hands (need a four wheeled walker all the time due to balance). I asked for a harness or something so I could try to walk 'normally'. I was in the process of being referred to a stroke rehab unit as they had a walking harness, but the physio there needed a report from the physio where I usually go. When I saw her she did some work with me using parallel bars but I can have that at home and then nothing further happened.

Do you know of any harness attached to ceiling? I guess that would help prevent falls when I try to walk. I did get walking poles which got me more upright but don't walk - not sure how much is due to fear of falling. Also think some safety harness above the loo would be useful as standing up and transferring my hands to the walker is when I most at risk of falls.

Alison - Rehab Nurse:
Our knowledge about neuroplasticity in MS is in its infancy - but rehabilitation practitioners are always mindful of its potential when considering therapy. What strikes me about your words is the last sentence; a social services OT should be able to help you with safety at the loo. Also check with the physio when she intends to see you again.

Vicki - MS Nurse:
Sounds like you need a full home assessment with both occupational therapy and physio. Are you able to request this through your GP? Neuroplasticity is a concept that considers the brains ability to learn new pathways to perform things. It is a concept that applied to anyone who has damage in the brain and is still relatively new in neurorehabilitation.

Kate:
Adult Services have provided a toilet frame that sits around the loo but the risk is transferring hands from that to the walker. Are there different types of frames?

Simon - MS Trust:
Perhaps not relevant to Kate's situation, but a recently published study of plasticity has shown that juggling can help to expand the brain's white matter, which controls the ability to see and react to things (read the abstract of the paper and a news item).

Kate:
Yes Simon, I'd heard about juggling. I have a pair of socks filled with rice! Didn't get good enough before picking them up of the floor became too difficult. When I find a willing 'victim' I play catch explaining it is good for eye/hand coordination.

Vicki - MS Nurse:
I think you would benefit from a home assessment as things may have changed from the last one and equipment may need to be reviewed and changed.

Alison - Rehab Nurse:
I agree totally with Vicki. Also if Adult Services can't offer you anything else a neuro specialist OT may be able to.

Kate:
Many thanks to all for this chatroom. It's been useful to have the topic of transition highlighted, and I agree with Alison and Vicki that a name/label is not important for getting the practical help. And thanks for pointing out it is important to attend the annual 15 minute appointment with the consultant. Any advice on how to use those 15 minutes well?

Alison - Rehab Nurse:
I always suggest starting a list a few weeks before. Write down all you think of. Then, just before your appointment, sort out there priorities. Remember it's your consultation.

Vicki - MS Nurse:
Alison is spot on. Write your concerns down as a list that is achievable within your time. Take someone with you to be your memory keeper. Put the number one concern at the top. Remember your neurologist wants to hear the truth, and work best with you as an honest, informed and prepared patient; you are partners.

Kate:
Thanks. Bye.


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Jules N:
My MS is progressing so I am trying to organise things to make life doable/enjoyable - just bought a buggy for the car, having a hoist for it put in my next Motability car. As I can now only walk a very limited distance, I rely on my car for independence and seeing the outside world. I worry that if the DLA changes happen will I still get the allowance or will I be shut in my bungalow?

Vicki - MS Nurse:
Jules, you go for it. You sound amazing and I am certain your MS team will make sure that you get all you are entitled to. I would recommend to anyone who is applying for any kind of entitlement to get some expert advice and not try to do it alone. Using the right words can be crucial and that is not always easy.

Alison - Rehab Nurse:
It's good to hear how you are organising yourself to get some enjoyable times. I think everyone is worried about benefits. However, I have yet to hear of anyone loosing a car! In our department if anyone is having problems like that we are quick to write wherever on their behalf. Find out who would support you should you have problems - then you are ready.


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Murphy:
What tells a doctor and patient that MS may be transitioning from RRMS to SPMS?

Vicki - MS Nurse:
It is what we call a clinical diagnosis. The history of events such as relapses, over time, the problems that are not going away or getting worse and the way the MS is affecting function. Then there are things that support the diagnosis such as how long someone has had MS, what treatments they have been on and how they have responded to those treatments.


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Vicki - MS Nurse:
It seems a good moment to reflect on the power of medical words when having a conversation with a doctor. There are some neurologists who would now prefer to use the term 'active' MS or 'non, or less, active' MS, and it is interesting to consider how someone might feel if told they did not have very active MS anymore but had a more quiet 'non, or less, active' MS.


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Patricia:
I have had MS since I was 24, I'm now 70. Has research advance at all?

Vicki - MS Nurse:
It is marvellous that you have reached 70. There is research to show that people with MS are living to a greater age, although we are not 100% sure why. There have been many advances in MS in the last decade and the pace of that is getting faster all the time.

Alison - Rehab Nurse:
What a question! I am expecting (hoping) Vicki will answer regarding the disease modifying treatments. I am going to say that through research, symptom treatment with drugs and therapies has changed hugely. I can go into specifics if you ask more detail. I suspect you are a remarkable lady - what would your top tip be for living with MS for 46 years?

Vicki - MS Nurse:
Alison has asked such an important question, especially for those who are younger and unsure about their future. Also our newsletter Open Door will keep you up to date with all that is happening.

Simon - MS Trust:
You can sign online for Open Door or ring us on 01462 4767600. We also do a weekly research news email alert.

Ruth:
I should imagine the qualities of endurance and a good sense of humour to keep going against the odds.


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Alan A:
Today is a bad day. I have claustrophobia. Twice I have gone for brain scans - last one was last Wednesday - and I could not go through with it. I have not slept very much since then worrying about it. I did have fluid taken out of my spine and it confirmed I had MS but they want me to have a scan. Is there anything else other than a brain scan? They have tried an open scanner but that did not happen. Can you suggest something?

Vicki - MS Nurse:
Good evening Alan, sorry it has been a bad day for you. There are a number of options for you:

  • sedation before you go in to the scanner
  • agreeing the diagnosis with your neurologist without a scan
  • undertaking sessions of something like hypnotherapy or cognitive behavioural therapy to support you in managing claustrophobia.

MRI is not an easy experience I know.

Alan A:
I have had claustrophobia for quite a few years. I went through an ordeal whilst in the army which I have never got over. They said they would give me temazepam but just the worry thinking about it is making me ill.

Vicki - MS Nurse:
I am so sorry to hear that. I would suggest that if it causing this much anxiety that you don't go through the investigation. MRI only supports what we call a working clinical diagnosis. It is not a definitive test so be reassured it is NOT essential to have it done and won't stop you from getting any treatment you might need. I promise you Alan it is not mandatory and you will not be prevented from getting all you need. Promise.

Alan A:
I'm just worried that I'm wasting the doctors' and nurses' time. My last doctor passed away 15 years ago and I have just been allocated another after changing surgery. I saw an MS nurse and they have given me another appointment for 12 months. I have no medicine for the MS or anything else and I don't want to push to hard for things that I need just in case they think I'm annoying.

Alison - Rehab Nurse:
Alan, never think you are wasting doctors' and nurses' time.

Vicki - MS Nurse:
Those thoughts are what we call 'fearful projections'. We none of us know what others are truly thinking and I can, again, reassure you that as an MS nurse I have never thought any patient a waste of time; quite the reverse. You are all a source of wonder and admiration, respect and love. So bin the annoying and have a really honest talk with your team; they are there to provide support and care for you.

Alison - Rehab Nurse:
Well said Vicki.

Alan A:
Thank you. I think it was due to my time in the army that I don't really question things. So thank you. I will phone up my MS nurse and ask.

Ruth:
You have my sympathy Alan I don't enjoy MRI scans at all.

By the way I have donated my brain to MS research so maybe they will find out then what was wrong with me.

Simon - MS Trust:
We had an article on the MS Tissue Bank in Open Door a year or so ago.

Vicki - MS Nurse:
Ruth, thank you for thinking of how future generations can be helped by our actions now. Brilliant.

Ruth:
I left off a pregabalin this morning because I was feeling a bit better, but the pain is back now in my hands and feet, so I still need it. Worth testing the situation though to prove to myself I still need the drugs.


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Simon - MS Trust:
As the chat seems to have eased off a little, I wonder is Vicki and Alison have some thoughts on an issue that hasn't been mentioned so far but seems to be a concern for people we talk to in the information team - stopping disease modifying drugs. Even if the drugs seem to be having little or no effect, the thought of stopping treatment can be a great worry to people, presumably as it represents the shift from there being a drug that works on the underlying condition, to there not being a treatment of this sort available.

Vicki - MS Nurse:
I think this is a very important point. For some, stopping treatment represents failure, loss of hope and inevitable decline. This is not so. It is simply that the limited actions of the disease modifying treatments are no longer relevant to what is happening MS wise. Stopping does not necessarily mean decline and many people with MS find they experience a slow evolution in their condition in their later years. It is also important to make early and ongoing investment in general health as many people with MS can get the same problems we all get if we don't take care of ourselves.

Alison - Rehab Nurse:
What a subject Simon. The ABN guideline says that the time to stop should be discussed at the time of starting but unfortunately I don't think this occurs. Even if it did there can be a long time between the two and people forget. I believe time and warning allows people to adjust to the idea. In my experience many people work it out for themselves. As a rehab not neurology MS nurse I don't work in a prescribing centre. I believe (hope) this facilitates the sort of conversation that helps people then go on to discussion with their neurologist. As with everything information reduces understandable fear - how about a MS Trust publication?

Simon - MS Trust:
The new edition of our book on disease modifying drugs is about to come out. This mentions both the options available and touches on the fact that for some a time will come when the drugs are no longer providing benefits.


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Simon - MS Trust:
It's just coming up to 7 o'clock and I'm afraid we have to finish today's chatroom. Thank you to Vicki and Alison for their comments this evening and to Susan, Jeremy, Wendy and Stephen earlier in the day. And thank too all of the people with MS who have shared their questions and comments.

Vicki - MS Nurse:
Thank you everyone and goodnight.

Ruth:
Thank you for being here today. We are desperately short of MS nurses in the North- West. There are two now instead of three and they don't work full-time and have clinics to do so they physically don't have the time to reply to all telephone queries like they used to. I think there are 5000 patients for them to cover. Is that more than for other areas?


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Resources mentioned in the chatroom

Other than our own publications, the MS Trust can not vouch for the content of the information listed.

MS Trust

MS Trust Information Team

0800 032 3839 / infoteam@mstrust.org.uk

Books

Factsheets

Previous chatroom transcripts

Open Door

Open Door is the MS Trust's free, quarterly newsletter

Way Ahead

Way Ahead, is the MS Trust's newsletter for health professionals

All MS Trust publications are free


Web pages



Other resources mentioned

MS Society publications

Other organisations

  • AbilityNet
    A national charity helping people with a disability use computers and the internet by adapting and adjusting their technology
  • Access To Work
    A scheme to support employers and employees if health or disability affect the way someone does their job.
  • Disability Law Service
    An independent charity providing legal information and advice to people with a disability in England and Wales
  • Emotional Logic
    Company providing workshops and home learning kits to help people explore and build on their emotions in times of stress and difficulty
  • Improving Access to Psychological Therapies (IAPT)
    A website developed to help NHS practitioners implement National Institute for Health and Clinical Excellence (NICE) guidance for people with depression and anxiety.
    The site does not provide direct services to individuals. For local service, contact your GP or visit the NHS Choices website
  • Jobcentre Plus
    Provides information on benefits and help with finding a job. Disability Employment Advisors (DEA) are available through Jobcentre Plus to help people find employment.
  • Motability
    A national charity that helps people in receipt of Disability Living Allowance (DLA) find accessible cars, powered wheelchairs or scooters
  • Mutual Support
    The armed forces multiple sclerosis support group
  • Samaritans
    A confidential emotional support service for anyone experiencing feelings of distress or despair

Books

(other editions of these books may be available)

Current and reported research studies mentioned

  • ASCEND
    A clinical study of the efficacy of natalizumab on reducing disability progression in people with secondary progressive MS. Currently recruiting at a number of centres around the UK
  • CUPID
    Cannabinoid Use in Progressive Inflammatory brain Disease
    Since the chatroom the initial results from this study have been presented. The study found no evidence to support an effect of THC on MS progression.

CRMP-2
Blocking the effects of a protein associated with damage that occurs in MS.

  • Petratos S, et al.
    Limiting multiple sclerosis related axonopathy by blocking Nogo receptor and CRMP-2 phosphorylation.
    Brain 2012;135(6):1794-1818.
    Abstract
  • Scientists discover a 'handbrake' for MS.
    Monash University new item - 26 April 2012

Impact of relapses over the long term

  • Tremlett H, et al.
    Impact of multiple sclerosis relapses on progression diminishes with time.
    Neurology 2009; 73(20): 1616-1623.
    Read online

Neuroplascity and juggling

  • Zatorre RJ, et al.
    Plasticity in gray and white: neuroimaging changes in brain structure during learning.
    Nature Neuroscience 2012;15(4):528-536.
    Abstract
  • Juggling can grow brain by five percent.
    Australian Women's Weekly - 16 May 2012

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