POZ Community Forums
Main Forums => Living With HIV => Topic started by: c69 on July 22, 2006, 10:22:56 am
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Hi, everyone.
Maybe someone can answer my question.
I have been suffering from what I would call mild neuropathy (numbness, tingling and burning sensation all over my body, insensitivity) even before I started medication, so I know it is not med related.
After starting on truvada/sustiva in May 2006 the symptoms subsided.
I have now seemed to reach a plateau and some days the burning sensation is even worse.
Now my question:
Does anyone have experience with the neuropathy fading away over time, maybe as the CD-4 count starts rising and the Vl declines?
In other words is the nerve damage repaired over time?
When I look up about this subject I always end up with med-related neuropathy, and the remedy is to stop the culprit meds.
But I have had this even before I started meds, so that's a different story.
I would appreciate any input.
Thank you.
C69
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I have had neuropothy since 1998. It, however, was always located mostly in my feet. I have no feeling in either foot, and my feet cramp up nightly, with the itchy and burning feeling sprinkled in all day and night. They told me, however, that mine was probaby caused from the meds (Zerit was mention as a culprit often)
It was expained to me by my DR like this: The nerves are like the wiring in your house. Your nerves have lost there cover(similar to the black coating around the household wires) So your nerves are sending mixed signals to your brian, causing the pain and cramping.
Now that is a very simple and basic expaination. My DR also told me that Neuropthy is very common in diabetics. Have you been checked for that?
Good luck.
Jeff
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Thx, jeffrey!
Actually I have been to a neurologist who did an EMG and he ruled out diabetis.
The EMG also showed no major problems,so the doc saw no problems also.
He thought it was due to my low cd-4 count at the time.
Anyway, I don't know what to think of it, I might be fine according to the EMG results but the burning sensation and numbness is far from imaginary so what's up with that?
But thx for your input again, just have to put up with it I guess.
best of luck to you too.
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Hello C69,
I can share with you my experiences. My neuropathy stated about 4 months or so, into therapy, back in the early part of 2004. I was never on meds prior. Neuropathy can be caused by the virus or some medications or both. Diabetes can also cause neuropathy, as Jeffrey stated
My t-cells at that time were still below 100. And the PN was very painful in those days. As my t-cell count went up , the pain diminished significantly, but it never went away completely.
I was doing pretty well, for a while, but in the past 6 months or so, it seems to be increasing again.
Take care-----Ray
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I can't offer you any answers but to say I experienced PN during my seroconversion. It wasn't severe, but definitely there, alot of tingling in my left leg. It pops up every now and then since then, but even milder than during seroconversion...more like a slight sensation in my leg from time to time. This, of course, sometimes makes me worry about what I might be in for in the future, but mostly I just don't worry about it.
I guess there is always the question as to whether symtoms we experience are from meds or hiv. I also wonder if these small symptoms will subside when I start meds. I have to imagine they will, and hopefully not replaced with drug side-effects.
brian
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I have surfed with Neuropathy since last year. It is now mostly in my feet and was at one time in my left hand.
I have been on Neurontin for quite some time now and I take {4} 300mg pills everyday.
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As always I can count on getting helpful feedback when submitting a question or remark on this forum.
I really do appreciate it, thanks everyone!
Greetings from Europe.
c69