Neuropathy.....Im confused?

[FiercenBed]

itz bn a up hill battle since diagnose and meds in july. after my stomach settled down from the torture of kaletra & truvada, i noticed 4 weeks ago my left 4 toes were numb. i called the dr in a panic and his solution was to wear lose shoes. well to make a long story that didn't work and it has bn getting quickly progressively worse. the doc keeps saying it cant b the meds and my cd4 is 380. iv had no previous accidents or back surgery.

in the Lessions Section of this web site it sez:

HIV itself has also been shown to cause nerve damage, usually in people with seriously suppressed immune systems. In most HIV-positive people, however, peripheral neuropathy is a side effect of the medicines they use – certain drugs, including those used to treat HIV and certain AIDS-related infections, can damage peripheral nerves and eventually lead to symptoms of neuropathy.

none of this applies to me so why the problem? now i have pain in both arms, wrist and that pins & needle thing in my lower legs. doc gave me elavil 2 weeks ago but doesn't seem to b doing anything. can just the hiv cause this even with a 'decent' cd4? any suggestions?

[dgls44]

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[Queen Tokelove]

itz bn a up hill battle since diagnose and meds in july. after my stomach settled down from the torture of kaletra & truvada, i noticed 4 weeks ago my left 4 toes were numb. i called the dr in a panic and his solution was to wear lose shoes. well to make a long story that didn't work and it has bn getting quickly progressively worse. the doc keeps saying it cant b the meds and my cd4 is 380. iv had no previous accidents or back surgery.

in the Lessions Section of this web site it sez:

HIV itself has also been shown to cause nerve damage, usually in people with seriously suppressed immune systems. In most HIV-positive people, however, peripheral neuropathy is a side effect of the medicines they use – certain drugs, including those used to treat HIV and certain AIDS-related infections, can damage peripheral nerves and eventually lead to symptoms of neuropathy.

none of this applies to me so why the problem? now i have pain in both arms, wrist and that pins & needle thing in my lower legs. doc gave me elavil 2 weeks ago but doesn't seem to b doing anything. can just the hiv cause this even with a 'decent' cd4? any suggestions?

Sorry to hear about your pain. I was wondering if you have been checked for diabetes cause that will cause neuropathy. I am also on Elavil, I started with 10mg and it worked for a few but then I had a doc appointment today and had the dosage upped to 25mg. I'm waiting to see if that helps. I'm no doc but maybe you can do the same or see about changing to a different medication.

[greatcyber]

Reading is a powerfool tool.  Just look down the list about 6 or 7 entries and there you will find excellent info on peripheral neuropathy, which is what you are discussing here.  No one can ever tell you  if it comes from meds or the disease itself, but diabetic neuropathy is different in etiology, therefore different to treat.  Each person has to be tested and treated as an individual.  What works for me might not do anything for you.

Read on and then you can always google peripheral neuropathy to find about clinical trials, etc that may be going on in your area.

From a fellow sufferer.  Read the other posts, especially if you also have a history of any back problems.

[FiercenBed]

i talked to the doc again today and he dosnt seem to b concerned about it. set up a appointment at johns hopkins for 2nd oppinion. hopefully someone can get to the bottom of it or @ least give me some relief.

[dgls44]

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[clarke]

There is Neurontin (Gabapentin), Cymbalta, Elavil, Lyrica and Nortriptyline for PN.

The MD's seem to treat PN for those of us who have HIV/AIDS (and not Diabetes) the same way it's treated for those who do have PN from Diabetes.

I was on Neurontin for almost 6 years until it quit working for me (I think it was because I was on my feet 8-9 hours daily working).  And now, it is just painful for me to walk, much less work on my equilibrium.  The Cymbalta made me extremely disoriented, Last night I took 25mgs. of Lyrica and I feel like that today and also feel like I want to drop into a hole.  The Nortriptyline made me physically ill (tossing chunks).

I take 25mgs. of Elavil and 2mgs. of Lorazapam at night.  Until I take those, I have no relief throughout the day from the PN.  Oh, I also take a hit of the "herb" at night as well, which also brings a lot of relief (my MD doesn't like me doing that, but hey, it works).

[clarke]

Well, after 25mg. of Lyrica, I woke up feeling like crud, nauseous and just feeling I wanted to disappear.  I've felt very, I guess the word I'm looking for is "anxious" all day, enough so I didn't want to eat all day.

Is this something I gotta get used to?

[dgls44]

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[greginvegas]

I can totally relate to you're problem.  I've been complaining to my DR for over year now about the pins & needles and numbness in both my hands and feet.  And of course, he's not concerned about it.  He told me that the problem with my hands was carpol tunnel and my feet was the way I was sitting.  It took my psychiatrist to prescribe Neurontin (also used to treat depression).  I've been taking it for almost a month now......and the feeling has come back in both my hands & feet.

[dgls44]

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[Tube]

I have always taken Grapeseed Extract allong with Videx, and I have had no neuropathy problems. when i haven't had the grapeseed extract I have felt the beginnings of Neuropathy.