Meds, Mind, Body & Benefits > Questions About Treatment & Side Effects

peripheral neuropathy

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allopathicholistic:
HI RON. The NIH is doing a clinical trial. I'm providing you the webpage just in case you like to follow PN news and/or if you like to "think outside the box" ... Who knows, maybe they're still looking for participants

Here it is http://www.clinicaltrials.gov/ct/show/NCT00317291

ALL THE BEST, ALEX

newt:
Hey Graway, hello

If your PN is worse on one side than the other, it's unlikey to be drug related, more likely to be neurological.  Drug-related PN tends to by symmetrical. - matt

Graway925:
Hello all,

THANKS for the great replies.  I sure wish I didn't need to wait until the middle of September to see a neurologist.  Here in the Ft Wayne, IN area one office has that specialty tied up.  I could drive to Chicago or Indianapolis...and...I don't want to start doing that unless absolutely necessary. 

I am hoping my problem is related to a prior back problem instead of HIV med related.  For some reason the doc who did the EMG feels it's not back related.  My primary care doc felt since the PN was not equal in both legs it was most likely not med related.

As I wrote earlier...my ID doc knew about this a few years ago...and shrugged it off.  Much in the same manner she told me a lump in my forearm was a "pinch" or bruise.  WELL, I told her about that "pinch or bruise" for over two years.  I finally had to insist upon seeing someone about it.  Turned out to be a benign tumor which was promptly removed.  This was back when my ID doc was also my primary care doc.  I am so glad I now have a primary care doc.  He's a great guy...  I guess better later than never...   My ID doc used me as sort of a guinea pig with KITCHEN SINK therapies...I'm sure most of you know what that terms refers to.  This means taking any and all anti-HIV drugs ones body can handle.  Sad thing...is that my liver did not agree with this mentality.  I ended up having thrombocytopenia(loss of platelets), vitiligo, and cholesterol counts in the 700's that no amount of dieting or meds could take care of and a variety of other medical maladies that would take several paragraphs to explain.  I guess I should take at least part of the blame...I told them I was wiling to experiment...instead of sitting idly by dying without knowing I had done my best to beat this disease.  WOWEE...hindsight is always 20/20.

MORE about that another day...I'm in too good of a mood to get into that right now...lol.

THANKS again guys for the replies...I appreciate all the input I can get.

Have a great day,
Ron

clarke:
I've had peripheral neuropathy (lower legs and feet) since 1995.  I believe it is a result of the meds that were out at that time (I cannot remember which one it was).  Up until 1999, it was extremely painful to walk, much less put on socks, shoes or even go barefoot.

I went to a pain clinic, and they tried Elavil and found I could only deal with 25 mg. (I'm 6' 5" tall and about 205).  Then they started trying Neurontin, and it was like "magic".  I lived on samples of Neurontin until it was allowed on the TN. formulary.

My feet still hurt, but not as bad.  I've broken toes without knowing they were broken, as well as my left ankle.

Anyhow, the Neurontin has been a "lifesaver" for me, as no more scooters in Walmart, Sams and stores like that.

clarke:
I almost forgot to add, my neuropathy makes my skin extremely sensitive but for some reason, kind of "numbs" the inside (thereby broken toes and an ankle).  The sensitivity of my feet is irregular though, in that a very small pebble or something like that can cause extreme discomfort.  But, I do not feel the heat of the sidewalk or sand on a sunny/hot day.  I feel the sensation of it, but not directly (does that make sense?).

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