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

You poor thing, you sound very frightened and desperate for answers. It's extremely difficult to function with working, raising a family, running the household and getting people to believe you when they can't see an obvious reason for your discomfort and it is totally disheartening when your much loved family and friends disengage and begin the "get over it" and "pull yourself together" blah blah blah. I'm so very sorry you are facing this without some definitive diagnosis and I totally understand your frustration, pain and angst.

There are a number of supportive folks on these threads, many who face what you do and have similar challenges. We are not only on this thread but on the RSD/CRPS, chronic pain etc. Often just being able to be understood and knowing you are not alone can bring a sense of relief. Feel as well as you can do and know we believe you, you are not crazy.

I really don't know anything about IGM ? but I do have severe SFN that started in my feet then hands and now is arms and legs, the smaller stuff is aching lower jaw that comes and goes and my teeth hurt. I'm sure there is other stuff but I just can't think straight right now

I had MRI's of back and neck and there were some issues but nothing they said would cause these symptoms.....nerve cond tests were normal. My symptoms started last May after chemo treatments ended in March. I realized that I had to be my own advocate because my onco didn't seem to really care and just said it would go away. I asked my foot and ankle dr (who I had only seen twice-I think) if he would do a skin biopsy and he did 2 punches on my right ankle. The results were zero A and C fibers in my feet. This is an easy test to do in the dr's office and you may want to push for it if you're looking for answers. The nerve cond tests usually don't show SFN.

And I changed oncologists when my Gyn dr became my advocate because she felt I had been 'set adrift' all my myself. She has been my dr for over 20 years and I'm blessed to have her in my life.

Please keep us posted.

Debi from Georgia

what's SFN?

Small Fiber Neuropathy (SFN)

Hi Pyr2,
I don't know if you'll see this as you posed so long ago. I was so sorry to read about your multiple problems and I am sincerely hoping that you have found some answers, and if not, that you've found a med that works for you.

I am writing to tell you that what you have does sound like SFN. I have it. But, long story short, my symptoms got worse and other aches and pains began after a while. These symptoms did not comply with SFN symptoms. I have just found out that I also have fibromyalgia so it's a double whammy for me. And I am wondering if you have the same. I did a lot of research and found that some people who are dx'ed with fibro have also been found to have SFN, like me. I presented this research just a week ago to my specialist, whom I trust and is a reputable doctor at a well-known hospital in my area. She confirmed that there is an over-lap between SFN and Fibro. While I was not happy to hear that, I at least now knew what was going on. I sincerely hope that you have a very good neuro and maybe need to see a rheumatologist who BELIEVES in fibro. You need to have a skin punch biopsy to dx SFN. That is the gold standard. NO other tests will show this. Trust me; I've had them all like you as my symptoms were very much like yours. There is no formal test for fibro and I have read that the trigger/tender point test is not used as much as it was. *admin edit*
I hope you get this and I truly hope you have found some relief.

I have only just seen your post but just wanted to make the point that I have been diagnosed with SLE/UCTD for many years despite having low or neg ANA and no other auto immune profile other than leucopenia and intermittent low C3C4. My disease has followed a steady and largely benign path for years until 2012 when it suddenly changed pace and course. For the past 2 years the onslaught has been on my nerves thus affecting my limbs, my strength, my breathing plus functioning of my left eye/left side of my face and so on. The problems come in pulses often alongside arthritis, erythema, MASSIVE fatigue and malaise.

My point is, I clearly have auto-immune disease with or without the 'typical' lab test results. I too have 3 young children and was so fit, I couldn't stay still for a moment. That was then, now is a different story.

Hope this helps. Clare

Sounds like ME/CFS. I get the motor running when I awake from cat naps, they call it (A.M. Surge) I think it involves the ANS. I get occular migraines with visual disturbances that effect my upper jaw and teeth and make my sinuses swell. I dont tremble in my sleep, but i some times punch in my sleep, just ask my broken table lamp, or I have floating/flying dreams. I also have a RLS like body jerk as I fall into the first stage of sleep, sort of a transition or hand off to the ANS that regulates the breathing and diaphram. Did you have elevated cykotine levels? and how were your B-12 AND Vit-D levels. I found B-12 injections very helpful for putting too bed many of my sleep disturbances. how are your energy levels? You might try Gabapentin first or cymbalta before the Lyrica. you might get some relief from the pregdisone 5-10 mgs or flexeril at the same dose before bed. I get a good result from beta blockers and a strict hydration regiment, gatorade and lots of water. I think SFN is just a symptom of what's got your PNS in a bunch. *edit*

Here's a link to an interesting talk and write-up on the subject of fibromyalgia and SFN and how a significant number of people diagnosed with the former show SFN when a punch biopsy was done. He's careful not to say that fibro was a mis-diagnosis, but rather that SFN could be an add-on problem.

Dr Charles Argoff, professor of neurology at Albany Medical College and director of the Comprehensive Pain Center at Albany Medical Center

http://www.medscape.com/viewarticle/838857