I'm female, 44, a normal weight, normal bp/cholesterol, exercise regularly. At age 35, I woke up with severe "prickly" pain on the soles of both feet & the palms of both hands; after 2-3 days, the pain went away. For the year prior to that pain, I'd had recurring mild viral symptoms (slight sore throat, low fever). From age 35-40, every few months I had 2-3 day attacks of this prickly pain in my hands and feet, and I had a chronic low-grade fever.(During this time, doctors were running tests to try to figure out why I had a fever, but had mistakenly dismissed the pain in my hands and feet as an allergic reaction.) By age 41-42, the fever was better, but the pain in my hands and feet was becoming much more chronic. Finally I was referred to a neurologist, who ran an EMG/NCV, brain and spine MRIs, and dozens of blood tests--all normal; a thermoregulatory sweat test, however, did show mild small-fiber neuropathy in my hands/feet. Top PN drs. (in another city) could not find a cause for the s.f.n., so they called it "post-viral," but were not interested in pursuing what virus I'd had. In the past year the pain has been getting somewhat better, so perhaps the small-fiber nerves are regenerating (which I was told might happen). My q: Do you know exactly which viruses cause small-fiber nerve damage? I'd like to know what virus I had for so long because I'm recently married and would like to try to have a baby; my ob-gyn thinks this is still possible at my age, but it's hard for her to advise w/out a clear picture of what exactly was wrong with me for so many years. Thank you!
I just wanted to add that the diseases/problems that doctors have said that I do not have include: diabetes, pre-diabetes, Sjogren's, amyloidosis, porphyria, heavy metal poisoning, HIV, m.s., lyme disease, lupus, and active Epstein Barr (though that test showed I once had mono). (P.S. Based on reading your responses to other people, I really like your approach to medicine--thanks in advance for any advice you can provide!)
Ps I just saw you comment. If you think logically about a process that effects the small nerves in your hands and feet, it has to be a process that is systemic, not localized. The list of conditions you have ruled out are all systemic. Reasoning from that I ask how could a vial infection select just the small nerve fibers and I have a hard time visualizing how that could happen except through some triggered immunue response. It just might be worth while to put that question to a first class clinical immunologist and get a battery of immmune studies to see if you have some immune residual. These professionals are usually in Rheumatology Sections in Dept of Medicine. They could also answer your viral questions with an appropriate consultation with the viologist. Good luck
It might be worth your while to be checked again periodically for antinuclear antibodies that might indicate Lupus, because sometimes it can take years before it is diagnosed. I stress this, because lupus can cause fever, and with the fever being so long-standing, this is much more likely than a virus. Another thing which you apparently have NOT been tested for is monoclonal gammopathy, which can also cause small fiber neuropathy. Testing for that requires an immunofixation/electrophoresis of blood and urine. I have, unfortunately, both lupus and monoclonal gammopathy, as well as small fiber neuropathy with the symptoms you are describing. Like you, I do not have diabetis, either.
Another thing that can cause small fiber neuropathy sometimes is hypothyroidism. A few weeks ago I was finally diagnosed with that, too. And yet another thing that may cause this neuropathy is sleep apnea. Hypothyroidism can cause both obesity and sleep apnea. A study at http://www.nature.com/ijo/journal/v31/n2/fig_tab/0803418t1.html (International Journal of Obesity) showed that 26% of obese patients with sleep apnea had small fiber neuropathy. I am only mildly obese, but have sleep apnea, too. I guess my nerves just didn't have a prayer of a chance! I snored, but was convinced I did not have sleep apnea. It took a sleep study to prove it to me. It was at the severe level. At least now I am getting treatment for the hypothyroidism (Hashimoto's thyroiditis), and using a CPAP machine for the sleep apnea. The MGUS and lupus-CREST overlap syndrome are being monitored.
A word about thyroid testing. There has been an ongoing fight between the endocrinologists and the labs about what should be considered the normal range for TSH. If your TSH results come through with an asterisk, but within the stated range of normality on the lab form, it means that your results fall within what the lab considers normal, but not within what the Academy of Clinical Endocrinology considers normal. In that case, insist on a referral to a good endocrinologist! My diagnosis was delayed for at least 3 years because my primary care doctors were not informed on this matter! Had I been properly referred, from the start, I might not have gained so much weight, suffered so much lethargy, and developed sleep apnea. This doesn't even include the fact that the neuropathy might have been avoided.
I too was diagnosed with Hypothroidism, then Small Fiber Neuropathy. Recently I was tested for Porphyria and the urine test revealed I did not have it. I have been complaining of cold hands and feet, my fingers and toes actually burn. Even when I am in bed under the covers and my body is too warm, my feet and hands continue to burn. My neurologist just mentioned to me to see a Rheumatologist. Unfortunately I had talked to my doctor about a referral in August of 2008, for pains in my hands which she replied you don't need to see a Rheumatologist just take Ibruprofen. Now the waiting list for the Rheumatologist I wanted to see is six months out. I called a different doctor and the wait is anywhere from a couple of weeks to a month. Trouble is after December my health insurance runs out. I have to get it on my own and with three hospitalizations in 2007 and all my medications I am going to be in a tough situation. I lost my job because they saw me limping around at work due to the severe pain in my feet and legs. Once Cobra Insurance runs out I don't know what I will do. I am waiting for my appeal from disability now that I have an attorney, who knows how long that could take. Also I wanted to mention I had my tonsils out 5/5/07 and the next day I had Phnemonia and was hospitalized due to swelling of my throat and being unable to swallow my own saliva.
Sorry,I forgot to mention a few things....
I am 38 years old, 5' 7", 149 pounds, before getting symptoms I was probably 136 pounds. I have never been pregnant either however, my symptoms are always with me and I would be afraid to carry the extra weight ob a baby. Currently I can no longer let my 65 pound lap dog jump up on my legs much less stand it when my other dog places his head on my leg. I cannot be in any one position too long and when I sit for 45 minutes or more I have to elevate my legs straight out in front of me (a short foot stool does not work). My fiance modified my desk at home by heightening it 3 inches and underneath the desk I have one of those large round footstools propped up on a dish pan. It is the perfect height.
I have been diagnosed with small fiber neuropathy, but am freaking out that it could be other things. Does it make you feel tired a lot? I will exercise and then have to come home and take a nap because my legs and arms are so tired. I feel dizzy a lot. I just want to know if these symptoms are common with neuropathy. Thanks!
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