sfn
 

I have idiopatic small fiber neuropathy, confirm by skin biopsy.

I think my pn is the result of taking Lipitor; however, since the numbness didn't start right away after beginning the drug, I never made the connection until my daughter-in-law read an article in The Peoples Pharmacy column about statins causing pn in some people. I did see several neurologists and the last one administered a battery of tests, all of which were inconclusive. This was in 1999. My main concern at that point was whether it would cause me to fall. She assured me it would not, and I was not having pain then, just numb feet. I should also state that I have autoimmune problems, hypothyroidism, Raynauds, migraine headaches, osteoporosis, and irritable bowel, so maybe I was a prime candidate for it. I am not diabetic.
I am taking the suggested supplements, including benfotiamine, and prefer to handle the pain now by watching my diet, not eating sugar, avoiding the night shades, and getting plenty of rest.

Joan

No, I don't believe that I was tested for CIDP. If I ask to be tested for it, do I ask for CIDP or are there other lab tests involved? Right off the top of my head, I cannot remember if I was tested for any other autoimmune disorders, I don't have my paperwork with me. I think I am going to request the referral to the Cleveland clinic. Last night was horrible. My hands burned terribly despite the nightime regimen of Cymbalta and Neurontin. Seems like I can tolerate the pain much better during the day but I need my sleep in order to do so. I decided to split my dose of Neurontin and take one this morning and one this evening to see if I could get a more "steady state" of the drug level over the 24 hrs instead of taking it all at bedtime. Bad move.....9:30am and I am sleepy. Won't get much done at work today. Thanks for the info, ;)Echoes Long Ago.

Hi Athena labs has a panel for autoimmune markers. A spinal tap can also be used to test for autoimmune markers. Going to Cleveland Clinic or the jack miller center in chicago would not be a bad idea.

http://millercenter.uchicago.edu/lea...ory/cidp.shtml

http://neuromuscular.wustl.edu/antibody/pnimdem.html

http://www.cidpusa.org/diagnosis.html

I have small fiber neuropathy and possibly autonomic neuropathy. I am still in the frustratingly long process of finding the WHY. I am seeing a new neurologist that specializes in autonomic dysfunction.

I am in kind of bad shape right now. :( I have decided to go the mega-dosage Neurontin route to help the severe pain in my left arm associated with this mess. Narcotic meds do not help all that much with this type of pain. I have been offered IVIG but am looking at a huge outlay of cash as my insurance only covers 80%. A hardship as I am not working because of this illness. Also, I am not sure if it would work. If I have a severe attack that lands me in the hospital (this happened last year), I will try the IVIG then.

Hope everyone is doing okay,

Mere

I dont believe in idiopathic ,, there is a reason for it,, and I just think when they rule out teh biggies that cause it,, they lay that idiopathic label on us,, The problem is,, we get it,, they cant find cause,, it gets worse,, still cant find cause,, then what?, do we just sit there and wonder at what point we throw in the towel due to the pain associated with SFN,,, I have it,, and I refuse to give in to it,, I want answers as to why I have it,,, I will tell you this,, if just one of your doctors or mine would come down with this,, you can bet they would leave no stone unturned looking for treatment,, I have gone IVIG,, Rituxin last week,, and this wek I feel like I should be pushing up dirt,,no energy,, sun burning my body, and were supposed to jsut accept this way of life,, ?

I agree with you 'feel the burn' - ideopathic is a cop out and we shouldnt put up with it - I have only had blood tests and a glucose tolerance test and then my neurologist went on maternity leave 15months ago - I have to wait until she returns to work as Neurologists are thin on the ground in Scotland - thats the good old British NHS system for you - healthcare is free but the waiting is brutal!
I am a scientist and it is second nature to research the unknown but you can only do so much yourself - we will all have PHDs in the subject before we are finished - lol
I would like to thank everyone here - whenever I am really bad like now I come on here, have a read and somehow things dont seem so bad:grouphug: .

Feel the burn & malawigirl,
Go to www.lizajane.org and download the chart for the tests for PN.
This site was designed by PN sufferers and experts for PN specifically.
This is the most comprehensive list of tests, for the causes of PN - that I know of.

I have vitamin deficient neuro - Vit B6- B12- Vitamin D

Be careful with B6.
Too much has been positively linked as one of the causes of PN.
A normal person should not take more than 50-100 mg/day, as a supplement.(this is totaled with all supplements, such as- B complex, multi-vitamins, & B6 added together.)