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DMTs and prognosis - advice please!

Hi everyone,

I was diagnosed with MS about 5 months ago, during a relapse, following 2 years with a CIS diagnosis.

I began discussing DMTs with my current neuro, but am in the process of being referred to a different neuro centre near to my work, where they are able to offer the full range of DMTs (if you fit the criteria).

So at the moment I’m not on a DMT and am unlikely to start one before the end of this year, once I’ve seen my new neuro. However I’ve done my own research into the disease and the treatment options, and am getting really confused by conflicting advice - so hoping you may be able to give me some words of wisdom!

Much of what I’ve read emphasises the importance of starting a DMT as soon as possible, and some also advocates the use of the drugs in the ‘more’ or ‘highly effective’ category, even if your disease does not seem severe at the present time.

However my current neuro has suggested that, statistically, my presentation indicates a better prognosis than for someone presenting with more frequent and ‘disabling’ attacks (my symptoms are mainly sensory, though I did have some bladder issues during my last relapse. I have 10+ brain lesions which were stable at the last scan, and have had 2 spinal cord attacks, which seem to be the main cause of my symptoms). He has suggested that people in my ‘category’ probably don’t need anything other than a moderately effective DMT, or no treatment at all, as the disease may well never progress much. I just can’t get my head around how much this seems to contradict such a lot of what I’ve read. I know no-one can predict the future or the course the disease will take with any certainty - but does my current neuro’s advice sound sensible / reasonable? Is it fairly typical advice for people whose symptoms seem relatively mild? I’m not too keen on taking medication if I can help it, and would rather not create additional health problems for myself with side effects of the stronger DMTs - but then again the possibility of MS turning from apparently ‘mild’ to ‘severe’ is quite scary…

I’m so anxious and confused! Do you have any thoughts? As I said I have a while to wait before I can see my new neuro, so it will be interesting to see what s/he says when the time comes.

Thanks for reading :slight_smile:

Sarah

I think the trouble is that most of the decisions about treatment eligibility are down to different health authorities and different neurologists. I’ve read the same as you which suggests that the quicker and harder you treat newly diagnosed CIS or MS the better your prognosis is. I’m due to see a new neurologist in a month or two and am going to go in with the same question. I want to know if I can start on DMD at the stage I’m at (CIS unless the new neurologist diagnoses me with MS at the appt). I’ll let you know what they say

Thanks BetsyKitten and good luck with your next appointment.

I wasn’t offered any treatment for CIS and I decided not to ask for it. I think I was hoping that it would be a one-off and I wasn’t keen on injecting myself if there was no need (of course I couldn’t be sure, but weighing it up I was fairly comfortable to ‘wait and see’).

Now I have the MS diagnosis, I’m a bit less comfortable with the waiting and seeing! I honestly don’t feel I suffer very badly in the normal day to day at all, compared to a lot of what I read - my main problem is and has always been altered sensations in my hands which make me a bit clumsy and can be very uncomfortable, especially in the heat. But I don’t ordinarily seem to have any loss of strength, any real balance issues, any vision problems, any stumbling etc - I don’t even really feel I suffer with fatigue.

So I’m finding it quite easy just to put it out of my mind… but then I worry I’m lulling myself into a false sense of security! I felt fine on New Year’s Eve - and then the next day couldn’t feel anything from the waist down and spent most of January hobbling around like an 90 year old! Luckily my legs got better eventually - easy to forget these things once they’ve passed…

Anyway good luck - hope you get some answers and yes please, let me know how you get on! I know it’s different for everyone but I still like to compare notes!

Sarah