Seriously frustrated

[djl45]

I have be feeling seriously bad for some 3 years now, muscle degregation, heart over beat, hard to walk, cant sleep nights due to cramps,pin and needles in arms, numbness.But no progress from my doctor. have seen and had blood tests for CMT and taken to Oxford for diagnosis but cam back "unrecognised "as any form of CMT? Whilet should be happy with this I still want to know whats wrong with me? My sister has suggested it could be Lyme desease? yeh I can tick the boxes but so can I for CMT.I'm beside myself as I feel too bad and feel walking may be limited for the future as I have no leg strength. gotta stop now as to tired to continue. Thanks

[chicodex]

Try to get a referral to the Queen Square Hospital of Neurology just around the corner from Great Ormond Street - they are very good.

[djl45 in reply to chicodex]

Thanks for that, I don't want to be diagnosed with CMT but do want to know whats wrong with me and if theres something that could be done? Evan my sister has said could it be Lyme disease ? It take family to suggest, not my own GP

[Blubabycakes]

Wondering how many genes they tested you for. I have a combination of 3 genes so I don't meet what text book cmt looks like

[djl45 in reply to Blubabycakes]

Hi

I have no idea, I’m beside myself with this, all I was told was I don’t match any of the known genes for cmt!!i have now been referred back to the neurologist who sent me to jogn Radcliffe in Oxford ( top hospitfor genealogy). He will be well impressed I’m sure.i would be pleased to hear I don’t have cmt or lunes desease but would like to know why I feel so bad and have lost all my muscles and feel fateged from the moment I get out of bed?

Cheers