I recently posted under Newly diagnosed (ish) explaining that they say that I’ve had this for about 24 years with a numb torso for about 6 months 23 years ago, numb feet about 12 years ago, both lasting about 6 months and for the last ten years bowel and bladder issues and then burning feet and legs for about 3 years. Finally last November I had a brain scan revealing lesions.
My first question is ( more accurately questions are)what type might I have? Was the stuff years ago relapses? If so what is the stuff now that doesn’t seem to be going away? How are they going to find out? I think they’re planning on seeing me every few months and checking whether things have got worse, will they do any other tests. Is the only way to check MRI’s? ( hope not, now I’m in my forties it seems to me that the hole in the machine has got smaller, Surely I haven’t got bigger!). Is the question and answer stuff the only way they will find out? I feel like I’ve been in limbo for a long time before diagnosis and am now in another type of limbo.
Next questions are around DMD’s. Would I be a candidate for these considering it would seem to be that at this stage it is unknown what type I have? What do they do? How do they work?
Lastly, this burning seems to be permanent now and I am not enjoying the side effects and no relief offered by the drugs I am trying, first baclofen and now gabopentin. Last time I saw my Neurologist he mentioned that he thinks cannabis based treatment will become legal at some point but went no further. I saw somebody else mention CBD stuff on here and the CB brothers. What is it, has it had THC removed, does it work, are there any side effects and will it show up on drug tests should they be introduced at work?
Many thanks in advance and Happy Easter,
I should mention that I had those potential tests with the little electric shocks and one where I had to stare at a screen with patterns on, they both showed that the pathways are a bit slow.