Comments for MS Trust Blog

Comment on Staying steady: avoiding falls when you have MS by Claire Sparrow

Claire Sparrow — Mon, 17 Jun 2013 15:05:11 +0000

never think ooh I havent worn those wedges for years I must wear them today cos Im having a really good morning and then stack it on the floor as the car salesman is showing you your new motability car in the middle of the showroom ya live and learn Ive had MS for 13 years and still learning stay strong ………….

Comment on Tingling, crawling, burning or prickling in the skin. What IS going on here? by Jimmie Tan

Jimmie Tan — Mon, 17 Jun 2013 01:01:18 +0000

Lesley,
I had burning skin on my neck and back. I went to Allergist and my PCP with no luck. Checked with my Dermatologist and he nailed it. I have a compressed nerve in my neck and he prescribed GABAPENTIN and its gone. Hope that helps.

Comment on Tingling, crawling, burning or prickling in the skin. What IS going on here? by Sharon

Sharon — Sun, 16 Jun 2013 19:28:47 +0000

Have had the “fizzy” feeling in my legs, felt like a corkscrew winding up my leg and like a bottle of pop that’s been “shaken, not stirred”. I used to stop walking wherever I was and wait for it to pass enough to move on, as the spasms meant I couldn’t move anyway, except in a floor bound motion. I leant on a wall, car, or whoever I was with. Told family, “fizzy leg” moment so they knew and they’d just chat to me whilst I was grimacing! They still use the phrase now.
I have other syptmoms but I am luckier than some. For me, but not for everyone, a positive and humorous outlook is the first go to option, telling myself that it’s the brain, not the function, that isn’t working correctly. For others, medication’s more of a must. Hopefully the right combination can be found to ease the grief it can bring. Sorry it’s a rambling post. We all have something to share and learn.

Comment on Tingling, crawling, burning or prickling in the skin. What IS going on here? by Sue King

Sue King — Fri, 07 Jun 2013 10:47:31 +0000

I feel if I have hit both elbows hard and I am experiencing the start of pins and needles all the time,the tips of my fingers are numb and I have to press hard on my keyboard to see they are working.

Comment on Life after work: how did you manage the change? by Jim Kenzig

Jim Kenzig — Wed, 05 Jun 2013 16:13:23 +0000

Diagnosed in October 2010 I was the Network Manager of one of the largest library systems in the US. I managed over 2000 desktops and a datacenter with over 80 servers. I woke up one morning unable to see, eventually part of my vision came back but my peripheral and visual acuity were off. I could no longer drive so my wife had to take me to work. I had to magnify the screen font on my computer to read it. While I was able to do this on my own computer it was near impossible to magnify the screen on every computer and server I had to work on. I began have trouble walking and had to use a cane, I was constantly dropping things. One day I was taking my lunch which was a chicken a la king dinner out of the microwave at work and my hands just gave out and it spilled all over me and the floor. I was so upset I left work and never returned. I went on Disability. Luckily I worked for the state and got disability from my work. Otherwise I had to wait 2 years to approved for Federal US disability. I do not know how others are able to make ends meet during this waiting period. My health insurance benefits ended up costing me twice as much and covered half of the things that my work insurance covered. Now after two years, just this month I am finally approved for Medicare Disability and am faced with having to change doctors and am not sure if and when I am going to be able to get my Tysabri infusions again. I have been on them for a little over 2 years now. I would suggest anyone who is going to stop working to make sure that you research how you are going to pay for your health insurance and also if you have not yet been diagnosed with MS to get life insurance first, because it is impossible to get it after you have beem diagnosed with MS.

Comment on Life after work: how did you manage the change? by karen

karen — Wed, 05 Jun 2013 11:52:19 +0000

I worked after my diagnosis for 10 years. I then went on maternity leave with my third child. When it came to returning I just couldn’t cope. I had already reduced hours and work patterns. Unfortunately the process to retirememt has beem long winded. I am now starting to feel guilty as since I made my peace with it I have had the best few days ever. I have suffered with loss of identity. I still hate havinh to give up and the battle with dwp but its worth it to have days when I can do normal things without having to plan tp rest ahead of time and afterwards.

Comment on Life after work: how did you manage the change? by Trevor Wright

Trevor Wright — Wed, 05 Jun 2013 11:33:00 +0000

Diagnosed in June 2008. I was at the time working as a supervisor for Martin McColls which turned into a management roll about a year later at a different shop. Then I moved city & went into Management at a hotel and restaurant. Then I had a major relapse about a month after I started and could not continue. I have not worked since January 2011, not through lack of wanting to, because the drive and ambition is still there, I just am unable to work. Period. Stress was probably a major factor in my relapse, because I took it upon myself to move city/home and start a new job. Two of the three Holy grails of stress. Then a year after all that my relationship fell apart. Cest La Vie.

Comment on Life after work: how did you manage the change? by Carrie Gray

Carrie Gray — Tue, 04 Jun 2013 16:12:54 +0000

Diagnosed in 1991 I continued working until 2002 as a local authority manager with increasing diffiuclty. One day I stood up and walked out not being able to cope a moment longer. A year later I was medically retired.It was a huge relie although my partner could not cope with me not working so left. Having little income I retrained as a Counsellor/Psychotherapist and now work from home. I wish I had left earlier before I got to breaking point and I am now so glad that I made the change to a less stressful and much meaningful occupation, hard though it is at times. My advice is Dont wait to long – the stress is counter productive.

Comment on Life after work: how did you manage the change? by Nerys

Nerys — Tue, 04 Jun 2013 16:08:47 +0000

MS did not make me give up work. Just the opposite- I worked twice as hard after I had been diagnosed, and was determined not to give up. I spent 16.5 years with the same company, 9 of those after my official diagnosis. I did not leave until I had the opportunity to take voluntary redundancy and MS was a factor in my decision making. It has now been a year, and I have realised that there is more to life than my previous job. More so when I consider that I may not always be as well as I currently am. It took me a while to make adjustments in my role, and I would advise anyone else to explore all options within their Company as soon as they are and to explore options outside as well. I have had no regrets since leaving, and agree with the post above that there are other opportunities. Having said that, had the opportunity to leave not come up, I am not sure that I would have been able to make the decision, as it was hard enough for me to ask for roles with adjustments whilst with my Company.

Comment on Life after work: how did you manage the change? by Giselle Rozzell

Giselle Rozzell — Tue, 04 Jun 2013 16:06:01 +0000

I was diagnosed in nov 2012 with ppms, am 50 and was thinking about a work change before diagnoses.. I struggled with the physical side of my job and new it was time to retire, which has now happened. It was a great relief to as fatigue became a problem and I couldnt give 100% to the job. Being retired enables me to volunteer elsewhere and enjoy pottering at home. I have no regrets making the decision though, it was a very big change at the time, added stress and anxiety. There comes a time in life when you have to stop.