So after a severe bout of optic neuritis (eye sight pretty much gone in one eye) it was dealt with steroids and I had a MRI scan. The MRI scan showed several lesions and the neurologist (not an MS specialist) eluded to the fact he thought it was MS given that the lesions clearly did not all occur at the same time and then referred me to an MS specialist. The specialist diagnosed CIS, talked me through all the DMTs that are available but then said I would be eligible for them only if there is evidence of another lesion on the MRI. A lumbar puncture would likely be very difficult as apparently I have limited fluid on my spine (a joyful discovery as I was about to have a c section last year). The plan is to have another MRI in 6 weeks, then 6 months then a year. My family are delighted I don’t need DMTs although I am a bit more reluctant to be quite so relieved.
I don’t have much to complain about in relative terms and I know I am lucky in that I have never had any mobility based symptoms but there are several things which could have been MS related over the years but that could also be many other things (cramps in legs, horrific fatigue which prompted a GP visit on a couple of occasions and sometimes I swear I have brain fog where my thoughts and my mouth are totally disconnected). I think I’m just a bit worried about the future. It definitely seems that some neurologists are keen to give more people treatment earlier, while others are of the opinion you need two clinical episodes. I am happy to go with the specialist, he is the expert but is it just a case of the NHS and lack of funding? I know nobody wants to take medication if it can be avoided, I suppose I just worry what is going on in my head that I am not aware of, or that I question.
Any thoughts would be much appreciated, I have good support but I do feel quite lonely on this.
I had optic neuritis as a first attack, mri showed lesions but as no contrast no way for them to know if all occurred at same time. I also saw a general neuro who said that it was all down to the migraines I’ve suffered from for years. After a few more queries from me I was referred to a specialist. He then advised a mri in six months and a lumber puncture. LP positive and mri with contrast showed a new additional lesion. However neuro wouldn’t prescribe DMT. Year down line It felt like my muscles in my thighs were tensing and untensing continuously the neuro wasn’t sure if it was a relapse and next mri didn’t show new lesions apparently, but at this point I was offered DMTs. I think that nice guidelines technically state 2 clinical relapses within 2 years, but some neuros take one attack and a further new lesion(s) as meeting the criteria. I think in your situation it may depend on what the next mris show. But there is a strict diagnosis protocol, called the Mac Donald criteria before you can be diagnosed with ms. I found the limbo period really stressful, and to be honest I don’t really understand the way DMTs are prescribed. I mean the neuros can’t tell us how we are going to progress and it all depends where the next lesion falls as to how you are effected. I understand that they have to balance the significant cost of DMTs and the risks from side effects but from everything I’ve read it seems the sooner people are treated the less likelyhood of progression and the greater the chances of staying independent and able to work. I’m not sure if I’ve helped at all, maybe someone else can provide further clarification. I know people are effected to different degrees, and as you say all things are relative, however, like you I’m still uneffected mobility wise, other than achy legs, but, your sight is precious and it’s more about the realisation that you now have a lifelong condition. I know how scared and in shock I was when I was in your current position and I still worry about the future, in my opinion I think that is a normal human response in the situation. I keep telling myself that worrying doesn’t help, but with me and I suspect others, it’s easier said than done . I have found this forum helpful, sometimes to ask questions sometimes just to read.
Chatterbox is quite right, diagnosis of MS is done according to the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria It’s all about relapses plus lesions being disseminated in time and space. So two relapses (separated by time), and two or more lesions (separated in space, ie in different locations in the CNS). So while you have dissemination in space, because you’ve only had one relapse, it doesn’t count that the lesions seem to have occurred at different times. So you aren’t diagnosed with MS, but CIS. There is a possibility that you’ll not have another relapse ever, or that 10 years will pass before another relapse occurs.
But disease modifying drugs (DMDs) are prescribed according to criteria set by NICE. You could be prescribed a DMD with a diagnosis of CIS, see the decision aid: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid But the options are quite limited, being one form of beta interferon or another, which are the less effective, older drugs. As all drugs have side effects, often neurologists prefer to wait for a further relapse before starting on a more effective drug, that possibly has less side effects.
If you compare the drugs available for CIS with the drugs available for ‘active MS’, you can see that the list leaps from 3 versions of one old drugs (all interferons) to 6 (including the interferons as one drug and the 2 varieties of Glatiramer Acetate as one drug).
Given these options, I can see that the neurologist basically has your interests in mind by not prescribing an old drug with limited relapse reduction rates and waiting for more evidence in order to widen the scope hugely. If you consider that another relapse could happen in a years time, or in 10 years, there’s no value to you taking a drug that may not be needful or indeed work if your next relapse is much sooner than a year.
It doesn’t stop you worrying, or panicking that a small difference is another relapse. Keep coming on here for support, and/or if you’ve been given an MS nurse, then lean on him/her.
Best of luck.
Thanks for the replies, they are really helpful and much appreciated. I do completely trust the neurologist, the whole experience has just made me doubt how I feel about several things. This website was recommended as a reliable source of information by the neurologist - I am also happy to have found this community, it’s great to have support and a space to ask questions.