Had CDIP for 15 years – leading neurologists in UK/US?

Hi all,

Ive been living with CDIP now for about 15 years after being diagnosed with GBS in 1990 when I was 12. Apparently a bad case of measles brought the condition on, at least thats what the doctors said. Seems like only yesterday that I was taking piano lessons then suddenly over a period of a few weeks I lost much of the dexterity in the hands. I never suffered any paralysis but instead just the agonising, gradual muscle wasting in the extremities (Hands/wrists and foot/ankle). Treatments included steroids in 1990 and immunoglobulin in 1997, both failing to have any impact. The Irish neurologist I saw ultimately seemed to lack any real compassion or desire to help, though that could also be my utterly frustrated view of the situation. I havent seen her since the late 90s anyway when I practically just gave up all hope of ever recovering.

On the positive side I did graduate from university and now work full time but I’d give it all up for a pair of normal hands and not having to wear drop foot splints. I cannot walk more than 100m w/o the splints and anything beyond that even with the splints is a struggle. I’ve decided anyway that I really need physiotherapy and to see a top neurologist before I waste away. Are there any genuinely helpful and above all, expert, neurologists out there, esp in the UK as its closer to the emerald isle. I suppose I’d be willing to go stateside as well provided it was truly exceptional or better than the european doctors. I’m truly fed up with the medical specialists in this country thats for sure.

Thanks