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Previous CIS diagnosis, now being offered drugs, advice please!

After an episode in 2014 but a clear MRI I received a CIS diagnosis and was offered no further treatment but told to be alert for further symptoms. I have just seen my neurologist after another bout of symptoms but since they have occurred in the same group of nerves I cannot be diagnosed with MS as dissemination is in time only and not space. I will be having a further MRI but my neuro said that even if it is still clear, conditions have changed and I am now eligible for drug therapy.

Avonex and Tecfidera were mentioned as possibilities and also pre-gablin, among others although I was reeling a bit at this point in the conversation and didn’t get everything written down.

I know that there are differing opinions on whether or not to take these drugs and my gut feeling is that I don’t feel sick enough to warrant taking anything, especially without a clear diagnosis. I asked my neuro how sure he was that what I am experiencing is due to an MS-like episode, especially given the clear scan but his response was that there is a great wealth of knowledge of MS gained pre- MRI’s and that my symptoms are very typical.

I will be having my new MRI before any decisions are made but I want to arm myself with information about all the options before the time comes to make a decision so I’m hoping that some of you lovely people here will have some advice for me.

Thank you x

Hi Libby

I’m of the view that if your diagnosis is likely to be changed to MS at some time in the future, then avoiding relapses should be the key to maintaining your current healthy state. And to do that, the best way is to take a DMD.

Disease Modifying Drugs (DMDs) are supposed to reduce relapses and reduce the severity of relapses by an average percentage. Avonex about 30-35% and Tecfidera about 50%. As we are talking about average percentages, a given drug could be 90% successful for patient A and only 20% successful for patient B. This of course means that you could be taking a DMD which suits you and you have no more relapses, no disability and if you’re very lucky, no disease progression.

Each DMD does of course come with its potential side effects. Many of which can be avoided if you take appropriate precautions.

You may feel that Avonex (or preferably Plegridy which is the same drug but a subcutaneous fortnightly injection rather than a weekly intramuscular injection) offers fewer side effects for you. But Tecfidera also can be very manageable with regard to side effects (look for advice given by community member Paolo) and has better average results. It’s also an oral therapy rather than injection.

I’ve read somewhere (sorry can’t remember where, maybe the Barts Blog: http://multiple-sclerosis-research.blogspot.com/ ) that Tecfidera is most effective when it’s the very first DMD a person takes. But don’t take my word for that, I might be misremembering that. **

Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid for information on the various DMDs. Also, talk to your MS nurse (hopefully you have one) and / or family and friends, once you’ve got your head round the pluses and minuses of each.

You’ve also mentioned Pregabalin. This is not a DMD, so plays no part in reducing the chance of relapses. It’s designed for treating neuropathic pain. There are many drugs which can help with specific symptoms. Again, look into each possible drug, discuss with MS nurse and see what you feel you have need of and what could help you the most. The https://support.mstrust.org.uk/shop has a load of information on symptoms and the management of those, both with drugs and with exercise, physio, vitamins etc.

I would say that it’s better to attack CIS which is likely to be reclassified as MS at some point sooner rather than later. Once you have experienced more relapses, you may find that each time you are left with a bit more residual damage which can add up to greater problems in the future.

However, what you take and what you decide against is a very personal decision. You need to weigh up the pros and cons for you and make your own mind up.

Best of luck.

Sue

** Edited, I have amazed myself in being correct that I’d read on the Barts Blog that Tecfidera is most effective when used as a first DMD rather than 2nd or 3rd line drug. See Multiple Sclerosis Research: #NeuroSpeak: DMF as a second-line agent or not

So if you are offered Tecfidera versus Avonex (or Plegridy), and decide to take a DMD at this point, it would make more sense to go for Tecfidera. If you found that Tecfidera didn’t suit you, you still have the option of Avonex or another DMD.

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That’s all really useful information, thank you Sue. I have already had a look at some of the information on this site but I will certainly check out the Barts blog and the MS trust.

A letter has arrived this morning from my consultant summarising the appointment on Friday

Apparently as well as the symptoms I have been experiencing, the consultant also noticed potential pallor in the upper temporal quadrant of my left optic disk, which has done nothing to ease my panic!

I think he is expecting to see something on the MRI scan, as he writes “she is aware that the scan may show signs of Multiple Sclerosis in which case a range of drugs could be offered to her, or may not conclusively show MS in which case an interferon could be offered”. He also says that I may require additional investigation including evoked potentials “although we would be keen to avoid lumbar puncture”.

When I looked up pregabalin I was slightly horrified at the potential side-effects and have pretty much already ruled this out. In any case I would rather live with the symptoms I have than take drugs regularly but I can see the benefits of trying to prevent further relapses.

I am starting to think that I will have to consider taking Tecfidera but I will now have to endure the wait until my scan and see what happens afterwards. I already have an appointment to see the neuro again in September at which time I suppose we will be talking drugs.

How can you be diagnosed with a CIS without any demyelination evidences? This would mean that anybody on earth, because of what ever medical reasons they have, who present with neurological symptoms should be incorporated into the CIS category without MRI evidences? Worst, these people should be offered MS drugs if they have a second neurological event without demyelination evidences? To me this make little sense… Am I the only one to think so?

I am sorry you have this shock to the system to deal with - and it is a shock.

But the best way to stay as well as you are is to head MS activity off at the pass, and that means getting on a DMD that helps keep you safe. You haven’t got a formal label of MS (and it is only a label), but you can see the way the wind is blowing. Your neurologist isn’t going to be offering you DMDs for fun. Do start on something, Libby. The DMDs won’t make either easier or harder the tough mental adjustments you need to make as you come to terms with troubling news about your health. But they will get to work on the important task of keeping you as well as you can be. Sooner the better.

Good luck.

Alison

I am sorry but I don’t understand the rational behind starting DMDs without a formal MS diagnosis. For the moment, libby76 does not have any demyelination evidences, and as far as his/her post indicates, libby76 did not have any other tests such as a LP or EVP in order to invoke a potentially definitive diagnosis of MS.

The problem could still be find somewhere else, and as MS is a diagnosis of exclusion, any treatment for it should not be started until it has been proven by a process of gradual elimination that MS is indeed the cause for his/her symptoms.

This is only my humble opinion, which I construct on the basis of what I have so far read about MS.

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I have a CIS diagnosis from 2-3 possible brain lesions and LP positive for oligoclonal bands. This made me eligible for the interferons or Copaxone. I’m currently on Rebif but would look to ask to switch as and when I get a formal MS diagnosis.

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Hi Blue Marble,

My initial feeling was the same as yours and to be honest I am still a bit confused about everything.

As I said above, I did ask the neurologist how he could be sure that this was an MS type event, especially as I have had two clear scans and no lumbar puncture or evoked potentials test. His response was that MS is a very thoroughly studied disease with knowledge going back hundreds of years whereas MRI scans are a relatively recent development. My symptoms are apparently very typical, this is what he said in the letter I received this morning:

" my suspicion is that this episode represents a relapse; the symptoms are certainly of a least equal intensity to those experienced before, they emerged out of a recognised trigger for inflammation namely repeated infection and they have resulted in persistent worsening and disability. I have explained how things have changed since we met last and how we are now able to offer treatment even if these bouts of inflammation are not associated with MR abnormalities. "

As Alison said, I suspect there is a good reason for them to be offering me DMD’s and at this stage I wouldn’t be too surprised if my next scan shows something up.

I hope you get some answers for yourself. It has been three years now since my initial episode and there has been a lot of wondering through that time. What has really helped me is to focus on ability, not the problems and to get on with the business of living as best I can by making minor adjustments to accommodate my difficulties but pretty much carrying on as normal.

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Thank you Alison. I don’t think the shock has properly hit yet as I feel fairly c’est la vie about it all at the moment. I’m sure I’ll be going through some tougher times ahead but at the moment I honestly feel a bit of a fake about it all as I know there are so many people worse off than me and at the moment my issues are comparatively minor and manageable. I do appreciate that this could well change in the future though and that taking something like Tecfidera would probably be a wise insurance-policy type move.

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Thank you for your reply libby76.

Your neurologist has an interesting view on the topic - a professional one at least, unlike mine - , but it remains that in order to be formally diagnosed with MS, one needs to meet the McDonald’s criteria, which I believe include at least demyelination evidences present MRI scans.

If I may ask, when are your next MRIs scheduled for? Also, what are the symptoms that you have recently experienced?

I am expecting to receive an MRI appointment in the near future, I was told it will be before I go on holiday in August. My latest symptoms have been pain in my left arm and leg, both of which also feel significantly weaker than usual. I have also been getting pins and needles, muscle spasms and I am having to be careful not to exert myself too much.

You are right regarding the McDonald criteria and indeed my symptoms do not currently represent dissemination in space. However, since the guidelines around DMD’s have changed since my initial CIS diagnosis, even if this current set of symptoms were my first ‘event’ I would be eligible for treatment.

My neuro did notice some potential issue with my left eye. I have made an opticians appointment and if there is indeed evidence of optic neuritis I guess that will be pretty conclusive to me, if still not enough for a formal diagnosis.

On a side note, a good friend of mine has recently suffered a significant neurological event which rendered her severely affected. Her brain MRI showed four lesions but even this wasn’t sufficient to diagnose MS as she has no dissemination in time as yet so her diagnosis is also CIS even though she is way more affected than I am.

I am diagnosed CIS after mri evidence of demylenation on my brain, i have been told i need 2 “disabling” episodes to even be considered for any type of medication, i have lost heart i have to admit, at the min i am feeling what will be will be shocking really