New Here - Neuropathy Message Board

vanilla · 12-23-2001, 09:07 PM

Hello all. I am new to this board, but not to neuropathy.
I was told that I had PN in August of 2000, after a numb, burning pinkie toe, wouldn't subside.
Since then, I have been diagnosed with Idiopathic Progressive Polyneuropathy. It affects my limbs, and is suspect in affecting the bladder as well. I have weak legs, numb feet, burning, incessant itching, electric shocks, pins and needles, the feel of swelling, thumping feet while wearing shoes, and a freezing feeling in my achilles tendons.
Oddly enough, I have an absent ankle jerk, yet, I am hyperreflexive in the knees.
I have had the works done on my body, as far as serology, and diagnostic studies, all of which are within normal ranges, even though the EMG/NCV shows the neuropathy. I had a low-normal B-12, for which I take 1000 mcgs of B-12 (sublingual), 1200 mg of Neurontin, percocet for pain, trazadone at night for sleep, wellbutrin for major depression due to chronic pain, and arthritech for swelling.
I think it's time that I increase the Neurontin, as the burning is returning. I guess there's not much they can do for the other symptoms of the neuropathy. I've tried so much.
I won't go the IVIG route, as it hasn't been proven to help "idiopathic" types of neuropathy. TENS unit helped only for a short while, then it just stopped working.
I also suffer from Thoracic Outlet Syndrome, which is very painful; a neurogenic bladder, migraines, left ulnar neuropathy, c-6/7 radiculopathy, all thoracic bulging discs, mild, and mild scoliosis.
My sympathies to you all who suffer with these horrid diseases. I can surely empathize with you all. If there's anything I can do, or send links for reference, just let me know. Over the past few months, I have accumulated quite an arsenal of information on my conditions, as well as many others. Just give me a holler, and I'd be more than happy to oblige.
Merry Christmas, and Happy New Year to you all.
Vanilla

fatcat · 12-24-2001, 11:02 PM

Merry Christmas to you too!
It is about 1 am Christmas morning,, I put the cat to bed,, finished my cooking,,, and all at once I feel lonely!!
Sounds like you have had alot going on with your illnes,, I still don't know whewre I stand-- somewhere inbetween MS and Back problems, or Neuropathy!

Could you please tell more about the TENS unit,, did it break or just 'stop working ' on your pain?
Are they expensive? I am tempted to get one to help with the sciatic pain and muscle spasms on my right waist area.
Thanks for the info,,
God Bless!!

vanilla · 12-27-2001, 09:00 PM

Stopped working on me, more like it. LOL!
Far as expense, I would say the best way to get one would be with a prescription from your doctor, if your insurance will cover them. I used my insurance to get mine, and all I know is that I only had to pay the co-payment. If you can get use of one thru physical therapy or chiropractic, at least you can get a chance to try one out, before going on with purchasing one. You'd hate to have to spend money on something that you'd only find out after the fact, that it wouldn't be effective on your particular type of pain. If you have a chiro or a therapist who could let you try one, that would be the best route to take.
My brother has had a TENS unit for his sciatica and degen. disc disease/HNPP(herniated disc) and said that it worked the same for his conditions. Only worked for so long, then was no longer effective on his pain.
Sorry to hear you have the possibility of MS looming. I sure hope it is not. Have you had the battery of tests to determine it yet? How far into a diagnosis are you? What have they ruled out? What kinds of tests have you had?
Good luck in your quest for a diagnosis.
Happy New Year

[This message has been edited by vanilla (edited 12-27-2001).]