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Consensus on how to treat MS

I wonder if anyone can advise me on whether I might be eligible for DMDs as my neurologist says not and isn’t even willing to let me have an MRI scan. I was diagnosed with MS in 2010 but have not had a “clinically significant” relapse since then and I count myself very fortunate for that. I suffer from extreme fatigue and have started taking amantadine for it (though not sure it makes much difference) and have had to cut my hours down at work to four days - I’m struggling with that now. I had three weeks off a couple of years ago when it was so bad I could hardly move around the house but my consultant said that wasn’t a relapse. When I had my annual appointment in December with him I told him about the new consensus on early treatment that I’ve read about on this site but he didn’t seem to know about it and said he had to abide by NICE guidelines and there was nothing I was eligible for. I asked for an MRI scan but he said there was no point because even if it showed new lesions he couldn’t do anything about it. I left feeling a bit helpless. Has anyone had similar experiences or can give me any advice? Thank you!

Or try and get a different neuro? You can ask your GP to refer you to someone else for a second opinion. Or just say you would rather have a different one. The treatment Pops received sounded much more like what should happen.

Hi

I am no neuro and perhaps its different for each neuro or different parts of the country?

I live in Kent and my friend (she’s not on the forum) has had MS since 2010 but no relapses since 2012. She went to her neuro as her fatigue was worsening and so was her walking. The neuro gave her an MRI, saw new lesions and offered her DMDs within a month.

I was offered Tysabri within 2 months of diagnosis. So perhaps we are lucky with our neuros or perhaps its the trust we are under.

Personally I have found, through this site and others, that some people really have to fight and shout until they get heard. Perhaps you will need to do the same.

I wish you all the best and remember to shout loud so they hear you and help you x

Think:

An MRI comes off the the Neurology department budget.
DMDs come off the Hospital budget.
Is your man being influenced by local constraints?
Is his refusal to send you for an MRI to make sure that you do not qualify for a DMD?
You might want to browse the NICE Guidelines for yourself:

https://www.nice.org.uk/guidance/cg186

Now start thinking about researching other hospitals within easy reach that have an MS Specialist.

Geoff

Wither Hills - I think you have to have had two clear relapses before DMD’s are prescribed.

I don’t think extreme fatigue counts as a relapse. What were your symptoms which brought about a dx of m.s.

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Hi, I had optic neuritis in 2000 and 2010 and some numbness in my face and on my scalp in 2005. Since then it’s been fatigue and tingling in my hands and feet but no significant relapse - so it may be that I haven’t had enough relapses to qualify which is what my neuro says - I need to do some more research.

My comment was made after the comment by Pops and only makes sense if you read it after their comment. I don’t know why they got swapped round.

Thanks all for your helpful replies. I’m going to see my gp to see if I can see a different and get an MRI and see what happens from there.

In my opinion (and nothing more) based on what I (think I) know… if you are diagnosed with RRMS, then you qualify for DMD. That simple!

Any deviation from this is negligent hogwash. I think your current neuro is shite and you ought to find another asap.

The very best of luck to you.

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I’m sure those diagnosed with CIS are entitled to an injectable DMD, but not a tablet. I think I agree with Paolo, RRMS diagnosis means you qualify for a DMD. If there’s new activity on MRI after a CIS I think also means can qualify for DMD.

Hope you can find an MS specialist neuro.

Sorry for my ignorance Lenney, what’s a CIS?

CIS is Clinically Isolated Symptom. It’s a first relapse or MS symptom.

Barts MS Blog did a post on it last year.

One of the doctors (The Mouse Doctor wrote this about CIS)

To get a diagnosis of MS you have to have lesions in time and space. Time means having an Inflammatory attack which can cause a Clinically isolated syndrome. However you would not call it MS until a second attack occurred (lesions in time). Furthermore the attack needs to focus on a different bit of the brain or spinal cord (lesions in space). So at CIS it may be MS but it may not be in a large proportion of people. However with additional information such as MRI imaging where you can see addition lesions and you can tell how old they are and you can see them in more than one place you can make diagnosis. So in brief CIS is the first symptom that gets you to see a doctor I wonder when you think back you have felt a lesion.optic neuritis is often the first CIS of MS because when your vision goes you notice it.