Quote:
Originally Posted by Susanne C.
I know not many of us have CMT here, but this would probably apply to any advanced case of small fiber neuropathy. I have been having a very stressful few weeks as my daughter is having serious pregnancy complications and we are her primary caregivers, her husband has to work and she has a toddler. With all the commotion I have forgotten my base pain meds a few times, I am on MS Contin 30 mg x 3. The pain if I forget the afternoon one is very bad by the evening, and unlike the generalized leg pain I always have, this is most prevalent in my knees and thighs up to the hips.
My skin biopsy at Johns Hopkins in 2011 showed no nerve fibers at ankle, few above knee, and breaking down at hip. If the primary pain has moved from feet and ankles to thighs as the nerves continue to deteriorate, what happens when it gets to the hips as it has- the numbness has progressed this far? Does anyone have experience or knowledge of what happens next? I definitely have some uncomfortable symptoms of tightness in the chest and muscle spasms, with loss of sensation from the waist down. I was given Baclofen for the muscle spasms and chest "hugs" but it isn't really helping. The Valium worked better, but is not a good idea for long term use and I am not going to get well.
I would be grateful for any input. Thanks.
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Hi Susanne,
As I recall, you have CMT2 but do not know the subtype of it. However, with CMT2 (whatever subtype) you can have phrenic nerve involvement and so have diaphragm weakness which can cause pain in your chest. Here is a site concerning the phrenic nerve.
http://en.wikipedia.org/wiki/Phrenic_nerve
I also recall that you have arthritis. Perhaps that is raising havoc with your hips, etc. Many things can be affected by arthritis as well. Here is a site for hip numbness and other things that happen with arthritis.
http://www.orthop.washington.edu/?q=...arthritis.html
IVIG is for autoimmune diseases of which CMT is not. IVIG is not without it's problems either.
http://www.gammagard.com/patients-an...e-effects.html
As you well know CMT is inherited.
Our support group leader had CMT2, not sure which subtype. But CMT progressed very fast with her and she also had phrenic nerve involvement and vocal cord paralysis at one point. She went from walking (the walk as we call it) to getting AFO's to then using a cane with them, falling and breaking the AFO and hurting her foot badly to a walker and AFO's and finally to a wheelchair. Just sharing what happened to her. And it was fast. Her hands were also involved.
Hope you find an answer.