I have seen multiple neurologists who have said none are asymmetrical so they don't know what's wrong.
I am unable to run, walk okay on most days (although there is always some who asks why I'm limping), no strength to hold anything on left side or flex muscle. Difficulty grasping anything with left hand or putting left foot in a shoe. Heat exacerbates the weakness (exercise, hot shower, outside temperature).
Started in the toes/fingers and worked up - leg first then arm. Difficult to hold my arm up over my head, lift leg to go up stairs, etc. No pain except initially there was burning sensation in my left outer thigh - now controlled with pain meds and anti-inflammatory (was told it is hip bursitis and probably an after affect from whatever is really wrong).
Other symptoms that may or may not be related (high cholesterol controlled by meds, IBS, migraines, vision suddenly not as good and now wear glasses, etc.).
I'm 45 and in otherwise good health. Thank you for any ideas!!
You may not be suffering from a neuropathy but symptom of something else. Neuropathies are disorders of the nerves themselves, maybe the disorder is elsewhere. Have they given you the run of tests? Blood work, CT scan, MRI, and x-rays? What did they show?
I think, considering your condition, who you should see is an immunologist. It sounds like a demyelinating disease, where the immune system or something else is attacking your nervous system. Your symptoms are classic of guillain-barre, MS, and ALS, but they don't attack assymetrically, but they do involve the immune system. So, bring it up and get a referral. It may help.
I have had multiple EEGs, MRIs, x-rays, blood tests, etc. No CT scan though. All were negative. The neurologists have rules out guillain-barre, MS, ALS, PLS and just last week Multi-focal motor neuropathy.
I went to an endocrinologist last week and he is running different blood tests. One where I had to take a steroid and fast. Have a follow-up with him 9/1 so I'll find out if it is a thyroid issue. If not, I will go to the immunologist.
I agree with you that it has to be demyelinating after everything I have read and what the doctors have ruled out.
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