Thank you for the reply - I completely agree with all you have said there.
I had an episode very much like a stroke initially but no mass on CT etc. and symptoms resolved for a little while. Then started coming back, subtly at first, getting worse over time.
When I first started getting symptomatic everyone initally thought MS. I've seen 3 neurologists and 1 neurosurgeon (long story) and all think MS until they get clean tests coming back.
The last neurologist said it was going to be a case of watch and wait. I do realise that symptoms can go on for years before MS is confirmed and that the criteria for it can miss cases.
I've literally had all sorts checked, vitamins, minerals, hormones, allergies, infections, diseases, fungal, bacterial and not coming up with anything apart from hypothyroidism (treated well). There is still some question over Lyme disease for me but I am not convinced.
I do wonder if perhaps the hypothyroidism in some ways has stopped the problem becoming MS - lower BP and slower pulse, lower iron etc.
The nature of my sensory problems pretty much rules out anything but a problem with the brain as I have pain, numbness and altered sensations head to toe on the right side of my body.
While I have some problems on my left, it's most pronounced on the right.
I think this is a route I have to follow as it's not getting any better, in fact it's slowly getting worse and I can't find either a medication that helps or a doctor that is willing to trial medications with me because I can't prove I have a problem to most of the medical world.
Cece - That's very interesting! While treating CCSVI is very much about limiting symptoms and preventing further problems I do think there's cases (perhaps like mine) when it can be used as a prevention to developing MS.
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.