Quote:
Originally Posted by Kitt
Hi Raina, I know that Lupus is an autoimmune disease. CMT is hereditary. It would be good to know the exact diagnosis for your muscle weakness, etc.
If in fact, you do have a type of CMT, do not overdo as it can exacerbate CMT symptoms. And, of course, it is possible to have other diseases as well as CMT. Hopefully, you will get the correct diagnosis.
Also, no one not even a doctor, can predict how you will end up with CMT. And I see the doctor did say that you have hereditary PN and symptoms cannot be reversed. Is there anything like this in your family history - ever so slight or worse? Keep us posted. I wish you well.
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Yes, my father (85)has PN and had pain but is now numb below his knees, he can walk but has to be careful and uses a cane most of the time, he also has a recliner that has a motorized lift so he can get out of it. My Mom had hammer toes, high arches and thin ankles and calves and balance problems(as do I)
but no pain or numbness and several siblings have PN foot pain and one has thin calves. I'm the only one who has muscle atrophy. Until my doctor visit we had never dreamed it was a hereditary neuropathy....We thought it was common to have PN pain. We have a lot of autoimmune disease in the family too and our sense of 'normal' is a little off as we all deal with pain and some level of disability.
Kitt, how do I know what is too much exercise? I'm only doing a few minutes a day but my shoulder pain never lets up even with the vicodin. I usually go unitl I can't because of pain or exhaustion. I don't want to give up anything that I can still do, like take care of grandchildren. Are there any good web sites I'm missing for information? thanks Raina