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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.
Yes, mine comes and goes after a bad virus. This one is the longest it has stuck around. I have had 3 memorable flares in the past 15 years that send me from dr to dr and eventually resolve. This time the symptoms are the worst and some areas are resolving and then the next day another body part flares up. It started with sudden intense went eye pain and vice like sinus/cheekbone headaches. Then it started to dull down only to flare up after a horrible bout of insomnia and the flu in December. I had these "head pressure rushes" (thats the only way to describe them) like my heart with take off and I would get nauseous and dizzy and I would get twitches in my eye and my head would feel like someone just pumped it up like a balloon. They were so incredibly disturbing. Like adrenaline/automatic nervous system out of whack (everyone says panic attacks, I KNOW these WERE NOT those and I had open heart surgery to correct my mitral valve a few years ago and I know these were arrythmia and not regular palpitations, I KNOW palpitaions these were not it).
The dr was not sure if it was epilepsy or migraines (no history of either). Those episodes left me with a major stiff neck and traps that last for 3 months in rock solid spasm pain of burning in the area and down my arms and occipital spasms. I couldn't sleep every position was painful on my neck and shoulders and arms. Then they did a spinal tap. Nothing. Finally , that neck and shoulders went away overnight (really)and my feet started with big toe cramps and burning all over and stabbing tips of toes. Thats gone and I find myself with left sides facial burning in my eye, tongue, throat area that sometimes encompasses my whole mouth and lips and my cheeks feel swolllen if that makes sense. Like I am coming down with the mumps.

I KNOW that there has to be something that "flares" in my body b/c every single flare over 15 years has been neurological in nature. Whether it is now SFN expressing itself for sure and for good, I imagine maybe. Its so weird to pin down b/c its so migratory. Remember there is length dependent and nonlength dependent, so it doesn't have to proceed orderly.

I saw your question in reply to my other post- I am 45 and for the past two months (about 9 months into this nightmare), my periods have started to change. First time in my life with the exception of being pregnant that I haven't had my period in 7 weeks. Very odd. I do beleive there is a hormonal component to all of this even though my test results were fine. My periods have been not totally out of whack but about 5 days early or late and one super light (lasting 2 days) and one super heavy (10 days). That pattern for the past year. My mom had early 42 menopause).

I don't know your situation but I have 3 kids, job husband, etc and my entire family is SICK of me. I hate having this terrible thing that can be labeled as "in your mind." When I finally came home with this diagnosis last week, it was so noneventful. It was almost as if my husband was like "honey can you pass the butter?" No interest. I try to talk to him about it but he's the type like if isn't gonna kill you suck it up. I am sucking it up - i thought I had MS, then Parkinson's then ALS, etc. THis ordeal has completely drained me of energy, happiness etc. My husband has a ton of ortho injuries from football and I keep telling him that is so different because he knows what is wrong with him. Neuro symptoms are terribly scary and progress. And the way this whole thing played out with me is making me looking like a crazy woman. Tremoring, shaking, twitching, etc. One other dr suggests benign fasiculation syndrome which sort of mimics SFN. Do you have any twitching?





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