Quote:
Originally Posted by Susanne C.
Yes, I know exactly what I have, it is CMT type 2. I do not know the variant because my neuro at Hopkins advised against further testing as it is untreatable. I wasn't asking for help I was simply answering Emily's specific question.
I have received enormous help and support from this forum, but I came here with a diagnosis.
My symptoms actually began in childhood. Only my eldest exhibited symptoms then just a tendency to roll on his ankles and a slapping gait.
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Thank you so much for following my post and trying to offer me advice and support, Susanne. It really means a lot to me!! I was going to PM you with a couple additional questions, but felt if someone else is going through something similar it would help them seeing these posts.
I cannot remember specific weakness or abnormalities through childhood, except me easily twisting my ankles. I was a gymnast from 5-16, so I was pretty coordinated and flexible. I am double jointed in my arms if that means anything...
These symptoms have came on pretty acutely, with the exception of the burning feet at night and maybe an alcohol intolerance. The burning feet had been going on for 6-8 months, maybe. I was likely tired and fatigued during that time too, but no huge red flags. The constant burning feet began Jan.26, within 3 days muscle weakness in upper arms and hands, and extreme fatigue, hard getting up stairs, etc. etc. The next couple weeks burning moved into my hands. I have the same issue with putting up dishes. It has gotten better because I trust myself to put them up now! I was making my husband put them up because I love my new, nice dishes from our wedding shower and would hate for my clumsiness to cause them to break!
I rest my arms, while using a computer/tablet by fully extending them. This seems to relieve the pain somewhat and I just switch arms every few mins in order to use my devices. I am not going to cause more damage by using them, I hope?
Within 1-1.5 months I started having all my symptoms.
Is this common in a CMT case? I thought symptoms came more gradually?
My next question is, will a neuro take this serious? Do you think in my case he is going to look deeply into my family history (my grandmother and dad are both in terrible shape and suffer from neuropathies, as far as I know both are idiopathic). My grandmother has hammertoes and dad has dropfoot (he has had surgery on his foot). Will a NCS/EMG show CMT or does this require genetic testing?
Thanks again to everyone for your continued support!