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Small fiber and autonomic neuropathy
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MedHelp Member's Question

Small fiber and autonomic neuropathy

by bamagairl, Feb 25, 2006 12:00AM
Good morning. I am a 32 yr old white female who has had so man y problems the past 10 years.I have worked consistently since I was 14 and put myself through college to get my degree in Accounting.About 10 years ago I started getting horrible migrainees,waking up with jaw pain, stiff joints and it felt like I had water in my left ear.This went on for days and I continued to work.  About 6 months later I began having sore ribs and stomach problems,like nausea cramping and diarrhea-kept working. A few weeks later I started getting really tired and needed a nap on the weekends.I was running low grade fevers with chills, but they would come and go. I has swollen glands in my neck,jaw,groin and axillary areas.Later I began having "sleep paralysis" and waking up with my whole body burning like a sunburn.Finally, I was having tachycardia and dizziness when I stood up and horrible surges of tachycardia while lying down and mt feet, thighs and knees were turning a purple color when I stood up.When I finally went to the dr he did a ton of tests.All were normal except the holter moniter, sinus-tachy and ttt showed tachy while upright, but bp stayed ok. Blood work all normal except lyme ab was 2.29 w/ wb IGG showed 2 bands-31&41.Spinal tap was ok except lyme ab was increased at 1.13. I live in woody areas of AL w/ amny tick pulled off my head.To sum up, all auto-immune testing for MG,GBS,lupus , ect.. normal.I now have been dx with small fiber and autonomic neuropathy,but no-one can find the cause.No diabetes.I am so young. No fam hx.Now I am so sick I can't work. Is lyme causing this?
Doctor's Answer

by CCF-Neuro-M.D.-PW, Mar 02, 2006 12:00AM
Lyme is a difficult diagnosis to make, and often the diagnosis has to be made clinically. Antibody tests are notoriously unreliable and even when positive may just indicate exposure at some point in the past, not neccessarily linked to your symptoms.



Lyme can cause headache from a non-infectious meningitis, and joint pains, stiffness etc. The other symptoms, such as the autonomic one are less typical, but may also be related to a post-viral reaction. However, many people with small fiber neuropathy remain without a cause despite all our testing. Lyme is lesslikely without a rash on the body in the first 1-2 weeks of a tick bite.



Isolated sinus tachycardia is a common syndrome in young women, and can be further evaluated by a tilt table test. It is usally not realted to an autonomic neuropathy or neurological disease.



Other tests of automomic function to diagnose an autonomic neuropathy are available at centers for autoniomic disease such as the Cleveland Clinic - test like cardiac responses to valsalva, and breathing, tilt table testing, pupillometry, sweat tests, and skin biopsyies are available. Perhaps an opinion from a neurologist specializing in autonomic disease might answer your questions more.



Good luck
Member Comments (14)

by dadio, Feb 25, 2006 12:00AM
Hi there, I have also been diagnosed with small fibre neuropathy.  Mine started in the feet and now has spread all the way up to my lower back.  It is a burning/prickling feeling and the thighs are a deep ache.  They say there is no cause for mine and call it idiopathic which I guess just means they dont know.  It is so frustrating as I am quite young too and had plans for my future.  I also get very tired all the time but find it very hard to sleep with the pain, have constant stomach upset and frequent migraines.  Are you on any medication?  I have tried almost everything but am now on Cymbalta which has had some success with neuropathic pain.  I spent a long time in the rain forests in Australia years ago and wonder if I may also have contracted Lyme disease although they say there is no sign of it now.

Take care Pauline

by fcar, Feb 27, 2006 12:00AM
dont know much about medicine but from doing lots of reading you can pretty much take some quesses.  I would from my gut say lyme causes quite serious problems to the immune system, especially testing postive for it.  See, another opionion becasue you may need to be put on antiboitics.  I know people who have lyme disease and  it reaks havoc on the body.

by bamagairl, Mar 01, 2006 12:00AM
To: The Dr.
I would also like to add that I have had all auto-immune tests to rule out gbs & mg as a cause.  Also blood tests for heavy metals, thyroid and porphyrin, fat aspirate for amyloidosis.I also feel like I am drunk all of the time, kind of like when you come right out of anesthesia and are very, very groggy.  All MRI's of the brain and spine are normal.  I really would like to know what is causing small fiber and autonomic neuropathy in someone my age.  If it was a virus, for example, why am I continually getting worse? I have had these symptoms for about 10 years.  That would make me 22 when it started. Would it seem that it is progressive and will eventually effect the large fibers and immobilize me to a wheelchair? I am afraid that since the small fibers have spread to my autonomics,they have spread and damaged the blood vessels because every time I stand up, my legs and arms turn purple and blotchy.  I really can't imagine something like this happening to someone so young and it getting so out of control and noone knowing the cause. I really need help.  I am bedridden and SOO sick.

by cols, Mar 07, 2006 12:00AM
I also have a small fiber neuropathy with autonomic involvement.  Mine has also been coined as idiopathic which has been very frustrating.  My problem started with Gastroparesis and then progressed to my legs with the burning, aching and abnormal sensations.  I also have constant muscle twitching all over my body.  After one year post diagnosis, I started to get severe intractable headaches, which I have had everyday for 5 months.  They have been the most debilitating yet.  Not even pain killers can take away the pain from the headaches.  Cymbalta and Lyrica are the best med combination for the neuropathy at the present time.  You can also inquire about Clonidine which also works for some people.  I have tried them all.  I am currently doing IVIG therapy and have noticed that my burning has subsided since starting those treatments.  In some cases, the small fiber neuropathy can resolve on it's own but many people will experience a leveling off of symptoms but will have some form for life.  Believe me I sympathize with you as it is a struggle everyday and the depression is unbelievable.  I am 33 years old and feel like my whole life is on hold.  Faith and prayer at times are the only things that we really have especially when the doctors don't know what caused these things to occur.  Good Luck.  You are in my thoughts and prayers.

by sally456, Mar 09, 2006 12:00AM
To: cols
could you explain in more detail what your burning and strange sensations feel like? Do you have tingling and does the burning feel like a sunburn??



Have you ever felt like some liquid was dripping inside your body?



i have all of these symptoms plus other...

bladder, and vision problems.