I know I shouldn’t question the neurologists dx but I had 1 lesion four years ago c6 area, 3 mild episodes in 4 years. Positive lumbar puncture and evoked potentials which showed a prob with my legs ‘consistent with demylenating disease’ Is this enough? I think I am questioning it as feel quite yuk on betaferon for past 2 months. Any thought appreciated thank you, Sue x
If I were you I would ask for another MRI. One small lesion hardly satisfys the McDonald criteria even with a positive LP.
Moyna xxx
I believe this would satisfy the McDonald criteria, because of the three episodes in four years. it is not always necessary to have another MRI, if it can be verified by clinical symptoms that there has been further activity - and especially if you had LP and evoked potentials consistent with MS.
I think it’s most unlikely you would have received a firm diagnosis, let alone been started on DMDs, unless the evidence was compelling. Most people have precisely the opposite problem - that it’s looking very like MS, but they still can’t quite make the grade in terms of evidence.
I don’t think feeling yuk on a DMD is evidence you’ve been misdiagnosed. They are not supposed to make you feel better anyway - only an attempt to reduce frequency or severity of future relapses. I think quite a high perentage of people switch or quit DMDs because of not feeling good on them - it doesn’t mean they were all misdiagnosed. It might just be that betaferon is not the right one for you. Have you told your MS nurse - if you have one - that you’re not feeling good on it? Does she recommend sticking with it a bit longer to see if things improve, or does she think there could be a case for switching to something else?
Are you actually feeling worse on the Betaferon, or just disappointed not to feel any better? If the latter, then perhaps it just wasn’t explained properly that you should not expect a massive improvement in how you feel, but there should be some reduction in frequency of episodes. Three in four years is quite frequent, as I think the average is only about one every two years, though some have a lot more than that, and some a lot fewer.
Tina
I had my dx in December after experiencing some weird sensations in my head/face after a bout of flu that was like a tingling and electrical buzz - they thought at the 111 place I had been having mini strokes. After convincing them I didn’t need an ambulance and that I had just got to work I took their advice and went to A&E this was in February 2013. The stroke theory was ruled out at A&E and I got an appointment with a consultant who then referred me for an MRI and to a neurologist who thought it was a brain virus and I went for a second MRI with dye in June. I called at least half a dozen for the results - 3 and a half months later I was told I would be sent an appointment and that the neurologist had the scan pictures but I couldn’t get my results over the phone. I got my appointment at long last for December and as he was going through the pics pointing out demyelinating plaques I asked him what it was still thinking it was a virus and he said ‘Oh it’s MS’ as if I’d asked him the time! I wasn’t impressed to say the least to find out in this dismissive matter of fact way especially from a neurologist! By this time, my symptoms had gone from about 80 - 90 a day in March (they lasted about 10- 12 seconds) and affecting my right leg and arm as well as my speech for a few seconds each time to about 3 a WEEK from around October/November with no effect on my limbs or speech. I was really tired but that was all. On his advice I started Rebif injections which make me feel flu like and sometimes give me chills in February and since then my tingling and electrical buzz do’s have come back and built up till I’m back at 60 - 80 a day again. My neurologist says it’s just a continuation of what I had but how can it be if there is sch a difference in the amount I’m having? My dx was made after one episode and two MRI scans and now I can’t get anyone to tell me what’s going on and why. Is there anyone who has experienced the same symptoms?
Val