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Originally Posted by Susanne C.
Thanks Kitt, yes they know, no they don't know it well. No one here seems to. Even the neurologist wasn't interested. My son's orthopedic surgeon is very expert in CMT (this son has hip dysplasia, not CMT, he is adopted) and said most of the interest is in pediatric CMT. They are going very slow and gentle, but I definitely notice the exhaustion. Why should standing on tip toes and heels ten times each feel like climbing Mt. Everest? I will take care, but am curious how much of the rapid degeneration is from forced inactivity this winter.
I was wondering about massage, whether it would hurt, help, or just feel better for a day or so? I asked the therapist, he said he would be able to tell if massage would help in a few weeks as he is trying to loosen my back muscles. I have had a big increase in spasticity the past few months.
Just trying to be a good patient. It seems like you have to accept the doctor's suggestions most of the time in order to be treated decently.
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I cannot stand on my heels or my tiptoes. Haven't been able to do that for twenty years. No problem though until much later as CMT progressed. Hadn't even noticed it back then as I had very few symptoms. Nothing much to speak of.
The deep message they (a chiropractor who really knew nothing about CMT only sports stuff) did on my back really crippled me up. I could no longer sit in my recliner. That took maybe three weeks to be able to do that. However, I can no longer recline in it to this day. That message, and only one time of which I really was not aware as it did not hurt while it was being done, did a number on me. But that's just me. I know some love it. Definitely not for me.