Peripheral Neuropathy, Peripheral Edema
Ian Baird
I am searching for information regarding the treatment of
Peripheral Neuropathy, Peripheral Edema, whether it be anecdotal or clinical
data.
What areas were effected?
What was the nature of the initial attack (Burning, Itch, Tingling, Pain
etc.)?
What were the lasting effects, after the initial attack?
Was Anti-HIV treatment stopped or altered?
How was the Peripheral Neuropathy/Edema treated?
What was the effect of that treatment?
Did treating the Peripheral Neuropathy/Edema while continuing Anti-HIV
treatment have any effect?
Any data on these subjects would be gratefully appreciated.
Be Well,
Ian Baird
ianb...@netcomuk.co.uk
BCase94945
cut in half with no apparent relief. After experiencing lipodistrophy (I was on
Crixivan for 9 mo) I switched to Videx in an attempt to reverse a vastly
increased midsection. PN started with a slight 'tingling' as if my feet had
fallen asleep. However, no amount of massage or other manipulation would make
it go away. That effect worsened into a feeling that my feet 'were on fire',
'walking on hot coals', etc. (about the bottom inch). To sleep, I take 50 mg of
Elavil (amytriptoline), having started with 10mg at first. On bad days, I have
permission to up the dose to up to 150 mg as needed. I'm most comfortable when
lying down on my back. Sitting in a normal position or walking greatly increase
the discomfort. Never any edema in my extremities.
Bob
myfanwy p.
I don't know how relevant you'll consider my information since I don't
have HIV or Aids. However I do suffer from peripheral neuropathy and
have for several years as a result of diabetes.
The initial attack was pain, and still remains so to this day. I was
referred to a neurologist, who diagnosed neuropathy in my hands (to just
past my wrists) and in my feet and legs, to my knees. To this day, I
have had no negative symptoms in any areas other than my feet, though my
circulation is poor in both hands and feet.
Prior to diagnosis, I went through a munber of hospitalisations over a
period of several months where the doctors/specialists did not believe I
was in the pain I was and they referred me to a psychiatrist, as they
believed it was all in my head, and I was imagining the pain.
The psychiatrist eventually acknowledged that there was something
physically wrong with me (not mentally). This came after a period of
stay in a private psychiatric clinic, being treated for a form of
anorexia. (You see, I had decided that the pain was too much to bear and
since no one believed me, I stopped eating).
However, I was eventually diagnosed and treated for the neuropathy. The
initial treatment was a number of different anti-depressants, hoping
that the side effects of the medication would allay the pain, but this
was only very minor. I was on a trial drug (Tolrestat, an
aldose-reductase inhibitor) for a year which was exceptional and reduced
my pain, n a scale of 1-10, from 9 to 2. However, that was withdrawn
from the market. The pain is now slightly controlled with Tegretol
(carbamazepine), 200mg twice daily; 500mg magnesium and 500mg calcium,
both twice a day.
take care
myfanwy
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greg presley
with vincristine at the same time that I was taking d4t. Although it has
lessened with time, I have never regained full nerve sensation in my feet. But I
have obtained relief from pain by taking a supplement called acetyl l-carnitine.
This is considered to be a precursor to some important neurotransmitters.
Unfortunately, it is quite expensive. (This is not the same as L-Carnitine which
is quite inexpensive.) I take two tablets a day
( I think they are 500 mg), or 60 a month, which is about $60. To me it is
worth it, but someone would need to try it to see if it makes a difference
before making that decision for himself - or else his checking account will make
the decision. Greg Presley