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Diagnosis of CIS and prescribed Disease Modifying Drugs?

I’ve been reading the forums the past weeks and finding them really helpful in this difficult time of being in limbo - having newly been diagnosed with CIS. After L’Hermitte’s sign in June/July I had an MRI in November which showed multiple brain lesions and have basically been told 80% of people with my profile end up with an MS diagnosis at some stage. I can’t deal well with either the heat or the cold, have what I describe as a ‘tiny bladder’, have quite bad fatigue and weird muscle twitches, pins and needles…and my mother had MS, so I am pretty much just awaiting (and yet hoping I never get) another episode.

My neurologist (NHS) said it wasn’t possible to get DMDs until I have an MS diagnosis, but reading the forums and speaking to people in other countries, neurologists seem to increasingly be prescribing them for people with CIS they identify as having a high likelihood of developing MS. I’m going to ask to be referred to a different neurologist, and am hoping to find one who does prescribe DMDs for people with CIS, can anyone private message me a name?

In order to get another neurologists name, you’ll need to specify where in the country you are. Or where you can get to.

You are right about people with CIS getting DMDs. They are licensed for people with a CIS who are deemed to be likely to have MS in the future. Which your neurologist seems to believe is the case with you.

Sue

Hi Sue, thanks for replying. Silly of me not to include my location - I’m in West Yorkshire, so really hoping for any neurologists in that area or Manchester/ Huddersfield/York.

In your shoes, I would be asking the same, and preparing to stand my ground if necessary.

If you haven’t yet come across the info in this link to the ever-excellent MS Trust, you might find it helpful with regard to current guidance from the neurologists’ professional body on the use of certain DMDs in CIS patients believed to be at high risk of upgrading to MS.

Good luck.

Alison

Thanks for your reply, Alison, and for the link on CIS, it looks like a really helpful resource.

It’s good to feel that someone understands that I would want to push for more options. To be honest the whole experience with this neurology department, from first having been told I had multiple spots of inflammation on my brain in November, to trying to find out what happens next, has been really alienating and isolating. There’s been no mention of MS nurses or resources - I guess because I’ve got the “CIS, go away and wait and see” label. They didn’t even initially tell me that I was diagnosed with CIS - it took me making an appointment with my GP and them allowing me to read the letter sent to them to find this out. They also forgot to do the blood test for Lyme’s, and it was only discovered that the result was missing because I asked specifically what that result was. When I asked what the next step was, I was told to go away and come back when/if I had further clinically significant symptoms: mobility issues, incontinence, cognitive problems…etc… When I prodded to know more about the likelihood of further symptoms, I was told 80%…I’m in my early 30s at the beginning of a pretty demanding career and am struggling to accept that I should just sit back waiting and hoping to be in the “lucky 20%”, especially given my ongoing and worsening problems with temperature regulation and fatigue over the past years.

Getting quite upset writing this - am clearly still struggling to come to terms with it all - but it’s good to be able to write it out.

Might you know of any other ways of either asking/convincing this neurologist to prescribe DMDs, or finding neurologists likely to prescribe them? Aside from moving to America! Thanks for listening to all the above outpourings too.

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Hi Achrida

Try writing to the neurologist. If you were to remind the neurologist, politely and nicely, that s/he told you that there was an 80% chance that you would go on to convert to MS. Also that the generally accepted information regarding DMDs is to treat people with a CIS who are likely to develop MS, with one of the beta-interferons, Glatirama Acetate (Copaxone), or Aubagio.

You could quote all the reliable sources you can find, eg Alison’s link to the MS Trust, this one from the Barts Blog: Multiple Sclerosis Research: Does the early bird get the worm in CIS? The 11 year follow-up to the BENEFIT study and/or this one, again from the Barts Blog: Multiple Sclerosis Research: ClinicSpeak: When to treat CIS?

Then request that you be prescribed one of these Disease Modifying Drugs.

If the neurologist refuses, they’d have to reply to you in writing. If you have also sent a copy of your letter to your GP, making it clear you’ve done so (just put cc Dr Blah) then the neurologist would also have to copy your GP into their reply. They would have to have good reasons to refuse and explain these in their reply.

Assuming this is what happens, and that you are unhappy with this, you could ask your GP to be referred to another neurologist. Or ask your neurologist in your letter to be referred to another MS specialist neuro if that doesn’t seem like you are prejudging the answer to your letter.

I hope this is the sort of thing that helps.

Sue

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Don’t do that, achrida. You have enough problems. :slight_smile:

Your situation takes me back to my (short!) spell in ‘watch and wait’ limbo. I was happy (well, I say happy…) to go away and get on with my life despite having as clear a personal view as you about the way the wind was blowing. I had had no previous neuro symptoms (and the ones I had presented with were going or had gone), there was no family history, DMDs had barely been invented and so were not a consideration and I was far too busy at work to mess about with chasing a life-changing dx. I reckoned that MS would find me if it wanted me, as it did a short time later.

Why do I feel a little bit differently now? (About your situation, that is, not mine.) DMDs. Your neurologist has actually been very frank about your chances; there are plenty would have been more mealy-mouthed about it. Hurrah for frankness: we all need to know where we stand. But to estimate that sort of conversion risk, having looked at you and your scan evidence and your family history and then refuse to engage in the matter of whether pre-dx DMDs were called for seems, well, unhelpful. If he/she had the discussion with you and set out the case for not prescribing them at this stage for x, y and z reasons, well that would maybe be another matter. But refusing to engage with that option as a possibility would leave me feeling dissatisfied too.

If the early-DMD issue is one that you feel strongly about, then get it back on the table. Sue has made some good suggestions about how to go about it. To that I would add that the early DMD exchange might, in the neurologist’s mind, be a quick in-passing exchange that he/she closed off without even thinking about it and has forgotten already; he/she might not know that it remains a big deal for you and demands a considered response, taking proper account of your situation and current professional best practice. Gather your evidence of good practice as well as explaining your views and get it on the neurologist’s agenda as something that needs proper discussion. Your GP will, if you are lucky, be an important ally as you plan how to make that discussion happen. It may be you need a second opinion, now or later (if your neurologist and you cannot come to terms). Again, the GP can be worth his/her weight in gold.

Alison

Hey I’m in the same boat, I to have suffered with 3 different episodes of lhermittes. I’ve had a mri scan which showed about 6 lesions on my brain my neurologist said I have ms but wanted to run further tests. And the letter i received didnt state that i haf ot (confused) I’ve had a lumbure puncture and still waiting for results after month. It’s all such a long process, makes me anxious Your not going through it alone Amy x Also I so not have any symptoms at the moment but was told if I developed any then they would put me on dmd

I am new and worried my new Doctor is not helping me. I have chronic fatigue. I have worked and managed for the last 10 years. From new years day my fatigue as returned really bad but with unusual symptoms. My bladder is bad having to wee all the time and started with vibrations from my knees down to my toes. More in my right side. My left eye aches I’m clumsy. I have which feels like electric shocks down my spine to my legs and arms. This makes me Itch uncontrollable. I have trouble with finding words. My old doctor did my bloods all fine then was going to refer me to a neurologist but when I told her I had moved told me she could not and I would need to register in my new town. I did and told my new doctor who said before I told him my symptoms a neurologist was going too far ahead. I told him what was wrong he arranged a emg which came back OK. Put me on tablets for the itching pain and nerve pain a and will see me in 2 weeks. Said my symptoms do not point to anything so I googled and here I am. All I want to ask should I worry or go along with my doctor ?

Hi Sue,

That is incredibly helpful advice, thank you so much. I read your response and was so grateful that I’d pushed myself to post something on this forum (I was quite hesitant at first).

A quick question - would you suggest e-mail or real letter?

Thanks again for taking the time to reply and really make a difference to a complete stranger. Makes me feel generally more positive about the world!

A

You’re right, without getting all political on it, staying around here still seems marginally better at this point!

Thanks you SO much for sharing your perspective and experience on this. I’ve found myself swinging wildly between the ‘get my head down and focus on work’ (when fatigue levels are ok) and forget that this ‘thing’ is there, and a future diagnosis is so likely…and then on the other hand, knowing that DMDs are available, I just can’t really let it go.

My two appointments with the neurologist have felt like pulling teeth - very minimal information provided, and only provided when I have asked, and been persistent about it. The 80% figure was really only volunteered after I pushed for the neuro to give some indication of what to expect, and explicitly asked: “what percentage of people like me, never get another episode?”. This was after I had gone through my whole list of symptoms, and had fired off a whole host of questions about research on everything from progesterone, to trials on CIS and UVB exposure. I think the neuro realised they weren’t getting rid of me without answering questions directly :slight_smile: I asked several times about the DMDs, but the answer was simply that it wasn’t possible without an MS diagnosis, something I now feel more equipped - given your and Sue’s responses - to (politely, carefully) challenge.

Given your busy job, did you find the diagnosis - when it came - ok to deal with? Did you (have to) notify them? Was it easier than limbo? Sorry for all the questions!

Thanks,

A

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Hi Amy,

Thanks for replying - it’s confusing isn’t it…especially cause it sounds like your neurologist said you do have it, but doesn’t seem to have made an official diagnosis, if the letter doesn’t state it? How far apart were your L’hermittes episodes? Mine was a constant 2 or 3 weeks, about 8 months ago, where every time I moved my neck down I had the buzzing.

My neuro didn’t tell me how many lesions I have, but I took a photo of the screen, and it looks like there are 3 bigger ones and quite a lot of small ones. I also don’t have any big symptoms at the moment, just ‘niggling’ ones - I sometimes feel a bit dizzy and unbalanced when I move my head down, and fatigue (but not constant), parts of my arms or legs suddenly feel like they’re burning, or I suddenly feel like I really need to pee (but don’t actually have to, and don’t).

Wish it were possible to get more answers without getting more symptoms!

Take care of yourself,

A

Hey achrida, Yes so I had lhermittes probably about 2 to 4 weeks then it stopped for a couple of months and came back! Very similar to you I’ve had my right arm spasm and I can pins and needles in my left arm but it is mild. Maybe it’s yo do where ever the lesions are? Did you have any lesions on your spine? Hope you are well Amy X

Hi, I would go back to your doctors and tell them your concerns I had to go back at least three times before they would refer me. If not you could always go private to get an mri scan x Amy

Hi

I think that depends on the response you get from the neurologists secretary. If you phone and ask him/her for advice on whether you could email them and that way get a written message to the neurologist, do that. If they sound a bit like they can’t be bothered, or if it’s a general admin pool rather than a specific secretary to the neurologist, then write a letter.

I have done both in the past. And each time I have received a written response from the neurologist.

All the best.

Sue

Hi

An EMG won’t be helpful if there is in fact something wrong with your nervous system. It tests muscle responses, not the nerves.

If you have continued to have the same problems, then see the GP again. Write down a list of all the things which you are tying together. Include on your list when symptoms started and how long they’ve lasted for. If symptoms have come and then gone, write roughly how long they stayed with you for. If symptoms have never improved, then have a note of that.

Don’t just concentrate on things that you’ve seen might indicate a neurological cause, in particular don’t use a list of MS symptoms and try to slot your symptoms into the diagnosis.

What you should really be doing is to list your actual symptoms. Let the doctor do the diagnostics. If you are convinced there is a neurological cause, then ask for a referral to a neurologist (given that your previous GP was going to do this).

If the doctor will not refer you, and you can afford an initial private appointment, consider seeing a neurologist privately. What many people do is to find a neurologist locally who has both a private and an NHS practice. You could then see the neurologist for an initial examination and ask to be referred to his/her NHS practice if they consider that the more expensive tests are necessary. If you can’t afford this, then you will need to get the GP on your side, so be polite, have everything written down that you’d like them to know about and ask for their help, rather than demanding it based on what your previous GP said.

Sue

Did I find the dx OK to deal with? Heck no: I was a teary mess for months. But as time went on, the squalls got rarer (although some reliable triggers remained for a long time).

Did a busy job help? Absolutely yes. The brute force of a looming deadline was one of the few things with the power to knock MS off the top of my agenda in those early days. Anything that brings relief from constant thinking about MS is a blessing. Most of the other things with the power to achieve that were immoral, illegal or hazardous, so work was definitely the healthy option.

Notifying work. My boss and close colleagues were in my confidence all along, so when the bad news came, the only problem was trying to communicate it coherently, given the uncontrollable teary mess issue. They were brilliant.

Was dx easier than limbo? I was in limbo such a short number of months that I hadn’t properly found my way around before being upgraded to highly active RRMS. It’s all a bit of a blur, looking back, quite honestly. But it got better. All change is tough, and finding you’re sick is tough and getting a life-changing dx is tough. I won’t lie: it’s no fun, as you know already. But my experience has been that we get back to something that feels like being our own selves again - and sooner than we think. As someone who posted on here used to say (and my apologies to him if I’ve got it wrong): everything will be OK, but you might have to redefine OK a little bit.

Alison

You must be my secret twin. Omg, reading your post is unfortunately as I’ve said before almost as I felt in the whole process. Down to the swinging reasoning and the asking questions. I was CIS now dx definite ms. It is soooooo frustrating. The thing is when something really scary happened, I for one could not just sit back and accept that these things just happen for no reason and all the lesions on my mri were down to my migraines. No, I had read up, I asked questions, I was not going to be fobbed off. I think he was somewhat surprised when my list came out, when he asked if I had any questions. Incidentally, when I asked if what I had researched was correct he did say yes, (not sure if he thought I was neurotic!) therefore as I had educated myself I was in a stronger position. My second Neuro looked at my first mri, listened to my history then said he would do another mri, this time with contrast and a lumber puncture and following this I received my dx. The point is at least he took time to properly investigate. No one in life knows what’s ahead of them, but for me personally it was about taking reasonable steps to try and have some reassurance. Not knowing without having,in my personal view, further reasonable investigations was not a nice place to be. Some people may chose to accept the first real scary symptom as one of these things that just happen. We are all different, but I think we deserve some respect if we show concern for our health after a scary neurological episode. I wish you the best of luck and you are not alone in your way of thinking.

In the past (for other things) I’ve found sometimes just seeing a different GP in the same practice has meant I get quite a different response and a willingness to refer to a specialist. As long as doing that doesn’t step on anyone’s toes or cause additional problems of course!

I hope you get some answers soon,

A

Hi Amy,

That sounds really unpleasant, are the pins and needles constant? I get pins and needles and ‘dead arms’ a lot at night (never used to), but I just presumed this was cause I’ve lost weight and my mattress is too hard…

No lesions in my spine - how about you?

A