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Junior Member
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Join Date: Jul 2009
Posts: 6
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Junior Member
Join Date: Jul 2009
Posts: 6
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I have been Dx with idiopathic small sensory nerve fiber neuropathy and nothing helps
Hello all..
I have been Dx with idopathic small sensory nerve fiber neuropathy and nothing helps. This all began in 2007 and is growing worse every month since.
My feet are burning on the soles, knife like stabbing pain at times, cold, semi-numb, burning on the tops, aching pain much of the time, hypersensitive to clothes. My legs are aching now, too, hypersenstive, tingling, just miserable.
This is also moving up into my face, tingling lips, hypersensitive skin, and into my arms and hands.
I have seen so many neurologists and pain specialists that I cannot even remember their names ! I need a SCORECARD to remember them ALL !!
OH, OH, get this! I have had EVERY kind of medical test there is...multiple MRIs of the neck, thoracic spine, lumbar spine, EMG/NCS, tilt table, QSART testing, every kind of blood test for every kind of weird medical condition, yet all come back NORMAL.
The MDs have given me all kinds of Rx, and NONE of it works !
Neurontin and Lyrica make me dizzy, gassy and ITCH like crazy, even a rash, though they help dampen the pain somewhat. Same deal with Keppra and Topamax.
Cymbalta makes me unable to sleep at night, and makes it hard to urinate, it somehow affects my kidneys.
Tramadol helps some but makes me dizzy and dopey, and itchy. NORCOS do the same, and the Duragesic Patch makes me break out into a terrible rash from foot to toes.
THEN I try the VITAMINS listed here.
I have taken Benfotiamine B1 103 mg with Menthylcobalamin 1000 mcg five to six times a day. Also Purified Fish Oil capsules 1000 mg 3 x a day, Inositol 500 mgs, CoQ Enzyme 10 200 mg, Acetyl-L- Carnitine 500 mg, Vitamin E 400 mg, Grape Seed Extract 100 mg plus a multiple vitamin in the morning and at night.
STILL no relief, and I have been taking all of this for MONTHS and MONTHS and MONTHS! So may say here that THESE vitamins will help, they do NOTHING for me at ALL !!
And get this....I was recently "laid off" my job at a busy law firm because the big shot partners said I was not "productive" enough. Well, how could I be with all this MIND SCREACHINIG PAIN ????
A male 57 yrs old like me, hard enough to find a new job in today's SICK economy who is WELL, not in excruciating pain like I AM EVERY DAY, even as I SIT HERE NOW !
My health insurance under COBRA will run dry in four months, I am too sick to work and Social Security Disability takes YRS to wait to receive (IF you are approved). I also hear that Social Security does not understand pain well, esp when you have pain that no objective medical tests can show you have an objective medical finding that can cause subjective pain.
ALL my TESTS are normal !
SO WHAT AM I GOING TO DO?
Modern medicine is USELESS, the vitamins are useless, the pain is becoming WORSE....quite frankly, I think my ONLY SOLUTION is to JUST END it ALL, and I MEAN IT !
And when I tell the MDs about all these vitamins I am taking, they tell me that I am throwing my $$$ away, nothing has been proven to regenerate
small nerve fibers and that I am foolish for thinking it has with these vitamins.
One neuro last week told me "LOOK, IF these vitamins WORKED, don't you think the MAYO CLINIC would be using them on their patients? WOULDN'T THEY WANT THEIR PATIENTS who suffer from your problem to get better, too?? WELL, the MAYO CLINIC does not tell their patients with your problem to take all these vitamins, so what you are doing lacks peer review, has no scientific truth to it and is PURE OUT AND OUT SENSELESS! Then he walked out of the examing room and his nurse told me "DR. DOES NOT WANT TO SEE YOU AGAIN ! "
Please, anyone, I am desperate! WHAT can I do to STOP or reduce this pain !
I even bought "THE REBUILDER" .. this device you place your feet into a water tub divided by a wall, then place these electrodes into the water, plug the unit into the wall, and it emits pulses that are supposed to make the
neuropathy HEAL.
Well, it works for about two hours after I am finished with it, then the pain becomes 5x WORSE than BEFORE I used "THE REBUILDER."
My health is SOO SOO SCREWED !
I cannot find any answers but one !
PLEASE HELP ME !
--Hurtin' Nerves  
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