Quote:
Originally Posted by judiesva
I was dx with Fibro years ago. Always have moderate to extreme fatigue. This past spring/summer had the nerve conduction study done. Results: "Abnormal nerve conduction studies of the lower extremities and left upper extremity (three extremities) with electodiagnostic evidence of a severe sensorimotor polyneuropathy with mixed axonal and demyelinating featuers with more prominent findings in the lower extremities." I have no "jerk" reaction in knees or ankles. Kaiser did for CMT testing which came back neg. Had followup last Fri and neuro said that he is pretty sure that my PN is "hereditary." Starting gabapentin this week when I can get to pharmacy. The problem with being able to keep flexion and press on gas pedal/brake just started a couple of weeks ago. Replied on another thread today regarding the "vise" like grip I have had on both feet for years. It's such a PAIN. I always have the sensation that my ankles/feet are very tight and extremely stiff. I can flex my ankles for only for a short time. I can not point my toes without immediately having calves clamp up with sevre cramping. Also, when I bend my toes, which feels very tight, they too cramp and then wont straighten out! OUCH!! Any advice, thoughts is greatly appreciated.
Judie
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Hi Judie!
As Kitt said, we aren't saying you have CMT, but honestly your symptoms sound exactly like mine. They are also not able to test for all variants, and the tests themselves carry a margin of error. I only had the test for HNPP done and the results said there was a 15% margin of error. I refused further testing, with my neuros' blessing, as there was ample evidence of what this was, and no treatment.
The wisest course of action seems to be following Mrs. D's advice as far as supplements, etc. and try to take the best care of yourself possible. Do everything that you can to heal that which is possible. If pain is keeping you from doing more of the things that you want to do, find a doctor willing to work with you for pain management. Pain can cause or exacerbate fatigue. Living with decreased muscle mass causes fatigue and pain as well. This is no picnic, but there are things that you can do to help yourself. Hereditary neuropathies also cover a huge spectrum of symptoms, onset, and disability, so don't be overly alarmed at anything your research turns up. No one can say with certainty where you will be five, ten years from now.
I am 50. Did you mention how old you are and I missed it? Also, I did not mean to sound so negative about driving and hand controls. I learned to drive late in life (37) so I have never been a great "instinctive" driver. It has always required extra concentration, which contributes to my difficulties.