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Neuropathy Stories

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The Well Project

Peripheral Neuropathy and HIV/AIDS

Table of Contents What Is Peripheral Neuropathy? What Causes PN? Who Is at Risk of Developing PN? How Do You Know if You Have PN? PN Treatments AIMS for PN What Is Peripheral Neuropathy? Many people living with HIV (HIV+) develop problems that involve the nervoussystem. The nervous system controls thinking, movement, sensations, andfeelings. There are two parts of the nervous system: the brain and spinal cord(central...
Ask the Experts

Peripheral Neuropathy - I Found Help!

Perhaps I'm writing this more to share than anything. I know how long I have searched for something to help with my Peripheral Neuropathy. And FINALLY- my Dr. just put me on Durogesic (Transdermal Fenatyl) Skin Patch use for Chronic Pain. I...
Keith Henry, M.D.

Response from Keith Henry, M.D.

University of Minnesota, School of Medicine
Thanks for sharing your story of something that was helpful in making your neuropathy more bearable. KH... Read more »

Is pain on back of hands/tops of feet, Neuropathy?

to avoid I have been HIV+ for nearly 20 years now and have been relatively healthy. My viral load was originally 24,000 and t-cells dropped to 225 then I went on meds back when crixivan was new (didnt have a name then) combined with azt/3tc....
Keith Henry, M.D.

Response from Keith Henry, M.D.

University of Minnesota, School of Medicine
Wow-what a story. You might consider getting off the AZT (? switch to abacavir) to perhaps help the fat loss. 3TC can cause peripheral neuropathy as a low rate. The symptoms you describe (and note) are unusual for drug related neuropathy.... Read more »

Is neuropathy a reason to start treatment

Thanks so much for this service, it is a lifeline to my sanity. At my first visit post diagnosis my labs were VL 52,500 and CD-4= 428 (24%). The Dr. said I probably should start meds at the next visit 3 months but i am nervous waiting. During the...
David Wohl, M.D.

Response from David Wohl, M.D.

University of North Carolina - Chapel Hill
The tingling and numbness could be due to peripheral neuropathy caused by HIV. It could also be anxiety. Did these symptoms exist prior to learning of your HIV diagnosis? If not, I would be concerned about this being 'nerves' rather... Read more »

Neuropathy

Dear Judith, I am a 37 years old male postive from last 3 years but not on med. From last 6 months i have been feeling severe neuropathy ( burining and pain in my shin, burning on my both sole). Now i have developed whole body pain and uneasyness....
Judith Feinberg, M.D.

Response from Judith Feinberg, M.D.

University of Cincinnati, College of Medicine
Neuropathy usually appears with more advanced disease. You may have tested positive 3 years ago, but you may have been infected 10 years ago. An educated guess about how long someone has been infected can sometimes be made from their CD4cell... Read more »
Connect With Others

RE my story so far, I'm so sad

Posted by Anonymous
Read your story, very similar to mine. I had every symptom and every test available all neg. I still sweat a lot and have neuropathy feelings in my legs. Turns out it was dengue, have you tested for that? I think it is prevalent in Korea but I'm not... Read more »

NEUROPATHY

Posted by Anonymous, 1 Reply
i am experiencing what i think is the beginnings of hiv neuropathy. in the mornings, i can see the blood fill my lower legs and standing becomes uncomfortable. standing anywhere for long periods of times becomes uncomfortable. my legs are weak. ... Read more »

Neuropathy??? maybe. Your thoughts?

Posted by Anonymous, 4 Replies
Hi guys. Scott here. Am very new to this forum. I'm very recently diagnosed. Exposed just over 3 months ago. 3 weeks after infection (amongst all the other symptoms) I got tingling in my hands, then an all over hypersensitivity sensation (like... Read more »

anybody experiencing neuropathy (tingling burning)

Posted by Anonymous, 2 Replies
i have always been such a healthy person, and now OUT OF THE DAMN BLUE i have burning and tingling feet, which bother me and make it hard for me to stand straight and walk normally. in the mornings and when i take showers, i can see the blood... Read more »