20 years ago my father presented with peripheral neuropathy in his hands (in his early 40's). He would wake up with numb hands that felt like balloons and have pins and needles and loss of sensation. He was diagnosed at the time with peripheral neuropathy, but with no cause of this investigated! His younger brother and sister also have the same symptoms. He was referred to a specialist neurologist by his regular neurologist who thought he had an inflammatory neuropathy, however specialist has diagnosed CMT1. At this stage he now has muscle wasting in both hands and feet as well as poor sensation in his fingers, and "champagne bottle" legs.
On to me... I'm 36 and have had strange nerve symptoms for about 5 years. 4 years ago I had cubital tunnel surgery on my right elbow, and last month I had the same surgery on my left. Each time the surgeons commented on how tight the nerves were in my arms. 4 years post surgery on my right and I still present with very tight nerves in my right arm. I also present with thumb spasms on my right hand, as well as occasional finger spasms, where my thumbs or fingers lock completely for several minutes. I have also lost about 40% of my grip in my right hand with obvious muscle wasting in my right palm. I have also over the last 3 months started to experience waking up with total numbness in both hands - the first symptom my father presented with, although I didn't know this until I mentioned it to him today!
Given my father's diagnosis and my presenting symptoms, my physiotherapist has now requested that I am referred to neurology to look at CMT as a cause, not least because she is at a total loss as to what else to do with me at this point!
So I guess questions: is it possible my ulnar nerve issues and tight nerve issues are related to CMT? Also I have a 9 year old daughter whole is has very hypermobile joints - is this too possibly related? I have always been very clumsy, as is my daughter, and as is my father!
Sorry this is all new for me! My GP has been most unhelpful in the past, however with the letter from the Physio as well as a copy of my father's diagnosis letter, I'm hoping I might finally get somewhere - I don't want to wait 20 years for a diagnosis like my dad, though I'm aware of course that there is no cure, but after presenting with these symptoms for some time I feel it would be relief to have some answers! Similarly if my daughter is affected, I want her to know sooner rather than later so that she can get whatever help she needs in the future without also having to risk waiting 20 years for a diagnosis!