Huge long story short, years ago I had a CIS and optical neuritis twice they also mentioned that it was probably benign MS, this was 15 and 5 years ago. In recent times I have had all the MS type symptoms of off being off balance and vertigo, shaking feeling as if I cant coordinate properly and also bowel and urinary problems and walking issues, there is a lot more but I will try and keep it brief for now.
I have been sent to the neurologist twice in the past and they said that they didn’t ( think ) it was MS, so they gave me a brain scan and so I have been told that it was ok… suffice to say that they also said that having an MRI doesn’t always show up everything. last week I was referred back to the neurologist for the 3rd time and they are now sending me for EPT tests and I have been told that I am having all the tests done. My ultimate question is to you guys is, does this sound like as though I have MS returning? When I went to the neurologist twice previously they basically told me it was all in my head!! but now they seem to be more concerned, or perhaps they are doing these extra tests to shut me up? Maybe some of you have been all though this as well and I would be interested to hear of any of your experiences. Finally , because I am having all these problems, would they give me DMDs now? the reason I am asking is because the neurologist said that they can give people that, but didnt actually say that they are or would give it to me… Is it better to start having this regardless? maybe you can let me know.
Hi Telboy, nobody here will be able to tell you if you’re having MS symptoms, only your neuro could do that. Once you’ve completed all the tests & the neuro has the results, you’ll probably be given an appointment to discuss your next step. DMD’s might be given if indeed you do have MS, but I don’t think they’ll be offered until your neuro is sure of his diagnosis…
DMD’s are designed to lessen the amount & severity of any future relapses you might have.
Personally, I would want to get started on these drugs asap, but not everyone feels this way & I’m certainly not a neuro! You’ll have to take his/her advice.
Hi , I am going to give you another possibility to think about which is what I have been diagnosed with. Years ago I was diagnosed with a CIS in 1990. My symptoms were severe l’hermittes - ie every time I put me neck down got electric shock type feelings going all the way down my body to my feet. I had MRI scans which were fine. Was told it was a CIS possibly due radiation I had for cancer. Anyway I obviously had some inflammation in my spinal cord. I recovered and forgot all about it. Then roll on to 2005 a when I was 45 and I had some numbness clear MRIs again. Then in 2010 started to notice foot drop. Had MRI and there was some atrophy (thinning) of my spinal cord. MS suspected but brain scan OK and so was lumber puncture.
Basically I have been told that there is no current disease activity and my current problems have arisen because of the CIS in 1990 and basically there is premature nerve death due to the fact the nerves were damaged by the CIS, Ageing happens to us all but is more rapid in areas we damaged when we were younger.
If they can see you problems are due to current disease activity (ie active MS) then DMDs will be given. If it is due to nerve damage under an old previous CIS then DMDs wont help.
My neuro has seen people with this nerve damage appearing later in life following issues in the past when people have had a CIS, or even whiplash - ie anything were there has been past inflammation. This problem apparently starts happening when people are in their mid forties when the damage was done when they were in their 20’s.