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Hi There. I am in the same situation. I doubt my new diagnosis b/c mine comes and goes as well, like every few years I have a flare. Mine is always with regard to a virus that preceeded it. I also have a polyclonal IGM that always shows up on all Elisa and western blots and an ANA, but no diagnosed autommune diseases. The drs think the polyclonal (shows inflammation, infection) has been around since my early 30's - 15 yrs apart the tests read the same. I always manifest with SFN symptoms that migrate throughout my body for a few months until my system calms down.

This one has been the longest and most protracted. Mine, if I have it, is nonlength dependent for sure. Mostly twitching, burning tips of my feet, muscle spasms in toes and forearms, patchiness all over, burning mouth and lips, lots of problems in the trigeminal nerve distribution. I also have a bizarre internal tremor that wakes me when I am sleeping - almost like I am having epilepsy while I sleep- I also have involuntary swallowing - the reflex automatically kicks in when I am waking, very strange.

I have had the million dollar work out for sure. EEG, MRI's, EKG's, Spinal Tap, blood tests out the wazoo.

Now that my "burning" has moved to my face (tugging sensations on my tongue, burning tonsils, lips) I want to see an orofacial pain specialist. This whole experience has made me 100% anxious and 100% depressed such that antidepressants and muscle relaxants are not even working on me. I am convinced something horrible is amiss. Its so awful to have something no one can see or prove. I feel like I want to push for the muscle biopsy.

interestingly, my psychiatrist says that SFN, burning mouth and all of my "symptoms" can be explained by anxiety. He says SFN closely tied with it. He says anxiety nerves share same pathway as neurological nerves from CNS. I resist the notion, but have heard that a lot of anxiety patients burn as well.

SOrry for dropping my story into this thread. I thought a diagnosis would help but I feel so alone and scared, still.





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