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Why diagnosing MS isn't always quick or straightforward

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The media has highlighted the results of a survey published today by the MS Society about being diagnosed with multiple sclerosis. The survey raises issues about the challenges of being diagnosed with MS and the delays and mis-diagnoses that some people experience. It reflects many of the themes that came out in the MS Trust’s recent research into the experience of being diagnosed with MS.

Be prepared!
For anyone concerned that they have symptoms that could be MS, your GP will usually be the first health professional you see. It is important to be as clear as possible about what has happened, your concerns and what you hope will happen next. Even if your GP wants a short period to ‘watch and wait’ you can agree a reasonable time for a follow-up appointment and that, if things haven’t changed, you would then like a referral to a neurologist. This shortens the wait and will help move things forward. It can help to keep a symptom diary so that you and your doctor can see what’s been happening with your symptoms while you are watching and waiting.

Diagnosing MS isn’t always straightforward
No diagnosis of a long-term condition is an easy experience and MS certainly poses particular challenges. What matters most is getting to the right health professional who can guide and advise you and getting reliable information to help you on your way.

Symptoms of MS are variable from one person to another and are also often symptoms of other conditions. This means that telling the difference between the possible diagnoses is critical. A GP can’t make a diagnosis of MS themselves as specialist tests will be needed. However, GPs will understandably be keen to make sure that their patients are referred to the right specialist doctor. This means that they may want to try and rule out some other possible explanations for symptoms before referring to a neurologist so may ask for blood or other tests first.

That isn’t a reason for a GP to be too cautious and take a very long ‘watch and wait’ approach. A GP is likely to only have a few people with MS on their books and so may not be aware that there are more treatment options for MS now or feel a sense of urgency to have a neurologist’s opinion.

Get good information
Every day the MS Trust info team receive calls and emails from people who have symptoms that they are concerned about. Although we can’t diagnose MS, talking through your symptoms and discussing how to move forward can help you continue to feel in control of your health and your life, even when things are uncertain. Someone who contacted the MS Trust info team recently wrote to us afterwards to say:

“I just wanted to say a quick thank you, you really went out of your way to help me whilst I was waiting for my diagnosis… You made me feel much better when I was feeling a bit lost. Thanks a lot. It made a real difference. I just wanted to recognise that you understood my anxiety and went the extra mile out of kindness – and that meant more than anything.”

We have six information officers who together have over 50 years of experience in providing MS information and have spoken to thousands of people with MS or who are worried that they might have MS. They can help by providing reliable information, assisting you to develop a way forward and listening to your concerns. The Information Team can also suggest which of our publications or online content might help you.

Looking forward
If it does turn out that you are diagnosed with MS, then getting good information and getting in contact with an MS specialist nurse are vital. This will help you get started on your journey of understanding MS and taking charge of your health and your life. Our Making Sense of MS  resources are a great place to start learning about MS and the MS Trust can also help signpost you to your nearest MS team. We believe that getting MS specialist support is crucial to make sure you can make the choices about managing your condition that are right for you.

You can join our Heart of MS Care campaign to make sure that everyone with MS has access to MS specialists – neurologists, MS nurses and allied health professionals like physiotherapists and occupational therapists – and get the best possible care.

Amy Bowen, Director of Service Development at the MS Trust

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