Originally Posted by Pyr2

Sorry, it is desperate. I can't go on any longer. It has been a diagnostic nightmare, everyone saying its all in my mind, and even 9 months later, with a tentative SFN diagnosis I don't feel any better.

Long story short. 15 yrs ago weird neuro symptoms. Full work up. No cause found other than High IGM. 2 yrs ago weird neuro symptoms, same thing, this time I am positive for Lyme. 9 months ago, disturbingly weird symptoms came on that would not leave. First severe headaches that radiated from my left eye to cheek, then vice feeling all over head and eye pressure. It settled down for a month or two, then came back with a vengence after the flu and two weeks of insomnia. That really got the ball rolling. That progressed into severe feeling of ear pressure, jaw pressure, mouth burning, tongue tugging, "teething," feeling like my cheeks were swollen. This would come in "attacks" that the pressure would rise and I would stiffen up - sometimes accompanied by dizziness, nausea and arrthymia - my muscles and left my neck stiff for 3 months. Burning, painful, arms, shoulders and then twitching and muscle spasms in forearms. Feet aching and pinching at tips of my toes and both feet burning up to my shin. I also have "tremors" when I sleep. I can move, so im not dreaming. I feel like a motor running or vibrations in my head and body. My head and scalp "tingle."

After a million dollar work up (really) - 3 brain mri's, cervical, neck mri, full body ct scan, lumbar puncture, eeg, etc.- the only abnormality is still that persnickety IGM. Its polyclonal which means "inflammation and infection" rather than monoclonal (which would be cancer, etc). I also have elevated anticardiolipin antibodies. As for lyme, although I have specific lyme antibodies (23, 41), the infectious disease dr said b/c I dont have an IGG response I can't have lymes b/c lymes is not chronic and I only keep showing an IGM response (?).

I have been to 3 neuros who all shrug their shoulders. One neuromusculatr specialist says fibromyalgia and burning mouth syndrome and benign fasciculation syndrome. The neuro who diagnosed me last week, also a nm specialist, said SFN. He did extensive EMG testing and said no need for biopsy. He seemed to dismiss most of my orofacial which are the most disturbing and debilitating to me! I have a constant left sore throat, tonsil and ear. Always feels like tonsillitis is starting. I can feel it as my mouth and tongue and lips start to burn. My eyes burn too. Mostly on the left. Lots of facial twitching.

He is putting me on Lyrica next week. I am already on Prozac- after all the tests turned up negative, my family just got sick of me and told me I needed "help." A very "suck it up we all have pain" bunch. Klonopin did nothing for me but ease my sleep at night which is needed, but nothing for the pain. I am a mom of 3, I work, I am usually a very high functioning lady with a professional degree and athlete - this is NOT in my head. I had open heart surgery a few years back for a valve repair and was running within a week - Im a pretty tough cookie. I guess I am just looking to see if my symptoms do sound like SFN. They have hung around longer than usual. Can they come and go? I am 45 so maybe a perimeno connection?

I seem to have flares every few years. ANd I do have a positive ANA buts its a low titer and I never show up as positive on any further breakdown for autoimmune. In my heart I do feel that this has an immune/viral basis as I had a terrible herpes cold sore outbreak in the midst of all of this and my symptoms always follow some type of cold or virus they worsen.....

I know I sound pathetic. I am just so beaten up by this diagnostic journey. I went from someone who never took a tylenol to waiting for my nightly pill to put me to sleep. Does this sound like SFN? I am not discounting the possibility that stress could be a contributor but cannot see this all being stress. I feel like something activated in my body. When the "attacks" started, I felt rushes of adrenaline in my chest and head.

I have 3 kids I am having a hard time taking care of them in a "flare." I feel like a disaster. I wish I could embrace this diagnosis but the symptoms are so scary that I always think the dr's have "missed" something horrible and I cant imagine getting worse. I want them to try something, something anything - drugs, ivig, prednasone - anything! I just want to find the cause and stop this all and I can't parce out what is the SFN and what is the underlying cause of the SFN. I think Im going crazy.
L