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Author Topic: Peripheral nueropathy  (Read 3047 times)

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Offline tommy246

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Peripheral nueropathy
« on: February 21, 2010, 09:49:19 AM »
Is there a test to see if you have this . I eat a good diet and dont drink much now but if i have a couple of days where i drink a little or eat a bit of rich food i tend to get a sensation in my toes more annoying than painfull  which i dont notice when walking maybe just a circulation thing i dont know.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline aztecan

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  • 32 years positive, 60 years a pain in the butt
Re: Peripheral nueropathy
« Reply #1 on: February 21, 2010, 11:56:29 AM »
Hey Tommy,

Yes, there are tests that can be done. Nerve conduction tests are done to determine whether any substantial nerve damage has occurred.

The test is not altogether pleasant, but not as bothersome as, say, a coloscopy.

That said, since you've only been on Atripla since November, it is unlikely you are experiencing peripheral neuropathy.

Atripla isn't prone to cause it in the first place and you simply haven't been on it long enough for that kind of damage to have been done.

If you had lived with HIV for a long time, I might suggest the virus itself might be causing your nerve issues. I know others who have had this happen.

Have you talked to your doctor about this? If not, you probably should mention it to him/her.

Actually, what you are describing sounds like gout to me. People may make fun of it, but gout is not fun and can be debilitating.

At any rate, the way to find out what is going on is to talk it over with you doctor and see whether further testing is needed.

Hope it resolves soon.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline J.R.E.

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Re: Peripheral nueropathy
« Reply #2 on: February 21, 2010, 05:12:17 PM »
Hi Tommy,

You can read a little about that nerve conduction test, that Mark mentioned, by clicking below.  This was one of my responses, when I had it done in 2004. I am not sure how effective that test can be though. The entire test lasted about 30 -40 minutes, from the time they wire you up with all the electrode thingies :


Current Meds ; Viramune, Epzicom, 20mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 9/24/2017

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 9/18/2017,  Viral load remains <40
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 66 years young.

Offline Ann

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Re: Peripheral nueropathy
« Reply #3 on: February 22, 2010, 09:25:17 AM »
Like Mark, what you describe sounds like (mild) gout to me too. Please make sure you mention this to your doctor. Gout is treatable. I also agree that it's not likely to be PN.
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Offline pozinathens

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Re: Peripheral nueropathy
« Reply #4 on: February 22, 2010, 01:41:35 PM »
Do not rule out the possibility of Guillain Barre Syndrome. It can manifests itself with tingling in extremities, especially the toes. I was diagnosed in 1996 but it took almost two months for the diagnosis. I still use a wheelchair.

Do a google for the illness for more information. Spinal tap can detect although nerve conduction test, etc. can also be done.

Offline tommy246

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Re: Peripheral nueropathy
« Reply #5 on: February 22, 2010, 02:43:01 PM »
I was thinking could be gout ann as if i eat really strict and zero alcohol for a couple of days it goes . I have my colesterol and lipids under control  does that have nothing to do with gout.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Moffie65

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Re: Peripheral nueropathy
« Reply #6 on: February 22, 2010, 08:40:40 PM »
Tommy, I have hesitated to place this here, because like those above, I don't particularly think you are getting Peripheral Neuropathy either.  However, being that this is an HIV/AIDS website, I would place something I wrote to give to various medical professionals that I come across in my survival experience.  It is something I wrote when I just couldn't explain in a doctors' visit just how impactful PN is to your everyday life.  This is from my experience and others here have had similar feelings to mine, while others not so much.  Either way, PN is no joke and kept me in a wheelchair for five years.  My Letter follows, and for those of you who are experiencing this, please feel free to print it out, and use it.

Blow Torch
Live Socket with bare wire
Light Bulb

Medical Professional:

   What follows are instructions for you to do to simulate the true pain and discomfort present with HIV related Peripheral Neuropathy.  This author does not know the difference or similarity of Diabetes related Neuropathy, but when I comment about the severe pain that I suffer on a twenty four hour basis, I am always put off with the instruction that people with Diabetes have been suffering with this forever, so donít complain about it!
   You might be wondering what the list of common household objects are doing at the top of the page.  These will have to be gathered, and used for you to experience the true joy of what your are about to embark on.
   First off, take the blowtorch, with a full tank, light it and place it in such a way that the intense heat of the flame covers the bulk of the bottoms of both feet.  If no blowtorch is available, sitting on a tall stool and placing your feet over the stove will work as well. Now you are experiencing the ďconstant fireĒ of Neu-ropathy.  Wait a minute, why are you moving your feet?, you must leave them over the heat until you are crazy with the pain, and for the rest of this exercise.
   Now you are set for the next step.  Take the vise-grip, and place it firmly locked on one of your big toe joints.  Make sure to place it under such pressure that the pain brings tears to your eyes.  With-out removing the vise-grip, and making sure to leave your feet over the heat, have someone else place the electric cord (wires exposed) into the wall outlet, and then at random have them touch your skin with the exposed wires, ever-so-lightly any-where from the tip of your toes up to your knees.  Meanwhile, pick up the hand saw and start dragging it between your toes (any of them will do), remember to do this activity very slowly and with determina-tion to achieve the maximum effect from the teeth of the saw.  Pick a toenail, and place the punch just under the nail and then use the hammer to tap the punch into your toe to about halfway up the nail, now you can remove the punch.  It is now time for a break, so you can remove your feet from the heat source and remove all the tools.  Carefully break the light bulb into one shoe, and remove the metal socket and throw it in the trash.  Make sure all the glass is still in your shoes, put them on and wear them for the rest of the day.  For maximum effect the glass should be emptied into your socks for a really good and accurate simulation.  By the way you are late for that meeting you are scheduled for and nobody is going to give you a chair, except that wonderful elderly lady that works in the mail room.  What do you do???? Take the chair, or go ahead and be polite and stand for the next hour.  Arenít you glad that you donít have to choose, because this has only been an exercise?  Those of us, who have no choice, live on and handle the pain as well as we can.
   In the future, when one of your clients speaks to you of their pain, PLEASE remember this exercise, and do not try to diminish their agony.  Do not suggest that they walk five miles (or even five yards) a day for the good of their heart.  With the pain that comes with Peripheral Neuropathy, a really good and final heart attack could be a true relief.
   One final note, this paper does not cover the pain that also migrates to your hands.  The same intensity and disabling effect happens, which makes life increas-ingly difficult for those affected.  Just remember, try to be kind.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline WillyWump

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Re: Peripheral nueropathy
« Reply #7 on: February 22, 2010, 09:30:34 PM »

Your symptoms sound like mine, they are more of an annoyance than anything else. Also, mine comes and goes and seem to be tied to the weather, also If I wear tight shoes I get the tingling, etc...

After reading Moffies description of Pn, it's clear I either do not have it or have an extrememly mild case of Pn.

However with that being said, My Doc diagnosed me with PN based on my very minor symptoms and one particular incident where I walked into her office with my shoes untied because my feet "were bothering me". I walked out with a diagnosis of PN and a prescription of Neurontin (Gabapentin). I'm starting to think she is a pill pusher, no tests were done or anything. I don't even take the Neurontin because it puts me to sleep.

Anyways, I don't think i have PN, and I doubt you do as well.

I think I just have "old age"

My heart goes out to those like Moffie.

POZ since '08

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Offline tednlou2

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Re: Peripheral nueropathy
« Reply #8 on: February 22, 2010, 10:41:09 PM »
I get tinglies in my hands and feet about every couple weeks.  I've always thought this was due to back problems and back surgery--a pinched nerve or something.  Now, I do wonder about this HIV related nerve disease.  I guess I will go with the back issue until I know something more.

I hope you feel better

Offline BT65

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Re: Peripheral nueropathy
« Reply #9 on: February 23, 2010, 07:25:01 AM »
I totally relate to Daddy Tim (Moffie).  I was diagnosed with PN years ago, starting from the very early HIV meds.  It's like sticking my feet in a light socket, and getting electrical jolts.  I used to bang my feet against walls, trying to get a little relief.  I also have diabetes, diagnosed about 13 years ago, and for quite awhile it went untreated (my fault), which worsened the PN. 

My doctor has me on 800 mgs on Neurontin 3 x a day, and this helps somewhat.  But, it doesn't totally relieve it. 
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Offline tommy246

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Re: Peripheral nueropathy
« Reply #10 on: February 23, 2010, 02:05:28 PM »
Thanks guys now i know its not pn if its that painful but does it start like that as i am sure i red it starts slowly with numbness tingling anyway i think it might be slight gout as it is affected by diet and i imagine if it was the start of pn it would be constant no matter what you ate or drank.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND


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