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peripheral neuropathy

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HEY THERE....just got a diagnosis of peripheral neuropathy in my lower legs.  Mainly my right foot.  I had an EMG (electromyogram?) performed two weeks ago.  I have also noticed a bit of numbness in my hands as well.

The only drug I currently take that is associated with neuropathy is dapsone.  I am forced to take dapsone because I am allergic to bactrim.  My CD4 count has been below 200 for going on ten years..and this has become a standard part of my regime.  We tried a gradual dosage to do bactrim again..>NO GO< reaction worse the second and third try than the first time around.

Just wondered...what experience the rest of you may have had.  I did have a ruptured disc about twenty years ago.  In a way...I am hoping the neuropathy in my legs is a result of the preexisting lower back injury..but..the doc does not really feel this is the case.

I hear there are drugs to help in controlling the further loss from nerve damage.  Sad that once nerve damage takes the stimuli away from a muscle it begins to atrophy.

I am not anxious to add more drugs to my daily regime.  Thankfully all is sailing well with the current regime which has caused no problems for nearly three years.  I really hate to add something that may push my bodies tolerance over the edge.

Any advice or words of wisdom from experience with this problem?

Thanks so much,

 I have some experience with "peripheral neuropathy"   I have been living with it for more than 10 years.....there is no known cure...and some of the drugs used  to treat can be scary.   Many of them are the same things used for people with seizures........My case stopped progressing ( didn't get any worse ) when I started a drug call Gabapentin.......  If you don't remove the cause  ( I couldn't until after the damage was done ) then it will "progress".   My case ended up with several pills a day but the progression has stopped (5 yrs ) now the "numb areas are more sensitive to little things  like grains of sand and small sharp objects.. I wear Skechers  of various types because they have nice spongy insoles.....My Dr says the overall effect of the neuropathy combined with significant Lipodystrophy   has removed my fat cushion under the skin....

Sorry to hear about you reaction to Bactrim....It is usually pretty effective...but won't reverse the problem   It seems the best you can do is to stop it getting worse and learn to live with it.. I have had three different Dr's tell me this.


Thanks for the reply.  Hopefully the neurologist will have some good news.  As I wrote earlier...I am hoping this is related to my back.

Sad the neurology office(only one here in Ft Wayne, IN)has a nearly three month back up for initial appts.  Sure seems like this could be considered important.  The doc who did the test is in the same office...but...he does not do followup as he is strictly testing and rehab. 

So, most likely the doc I see in three months will tell me to take the drugs you mentioned  or more tests.  I am on a cancellation list in hopes I can get in a bit sooner.

THANKS AGAIN...appreciate the reply,

Hello Ron,

Your going to find, that there are a few of us, dealing with differant degress of PN. Mine had started in the early part of 2004, probably 5 or 6 months into the starting of meds. I currently do not take anything for my PN. I was prescribed "nebumetone" for it, back in 2004. But I don't like taking any more pills then the next guy. I will on occassion take Advil or tylenol

In the other forums Tim "moffie" had wrote wrote this, that you may find interesting. I also linked you to the entire thread dealing with PN.

From Tim (moffie) :

In the past, many of us were placed on the "d" drugs, or ddi, ddc, and d4t. I was on all three for some time, I think about three years. I spent most of 1997 and 8 making sure that the Lazy Boy Recliner didn't move. Being a person of some considerable acitivity, I found this time to be one of pure torture. I was also dealing with the after effects of two bouts of PCP, so the time was a blur in my memory for the most part, due to the fact that the high fevers, 104 -105, left my brain pretty blank about that period of time.

What follows is a paper that I wrote for those of you who suffer from PN, to hand to your medical professional, when you tell them about the joys of PN, and they shrug their shoulders and say that people with Diabetes have been suffering from PN for ever, so get used to it.


Blow Torch, Vise-Grip, Live Socket With Bare Wires, Punch, Hammer, Light Bulb, Carpenter's Saw

Medical Professional:

What follows are instructions for you to do to simulate the true pain and discomfort that is present with HIV related Peripheral Neuropatyhy. This author does not know the difference or similarity of Diabetes related PN, 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 don't complain about it!

You might be wondering what the list of common household objects are doing at the top of this document. These will have to be gathered, and used for you to experience the true joy of what you 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 "constant fire" of PN. Wait a minute, why are you moving your feet?, you must leave thiem 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 large toe joints. Make sure to place it under such pressure that the pain brings tears to your eyes. Without removing the vise-grip, and making sure to leave your feet over the heat, have someone else place the elcetric cord (wires exposed) into the wall outlet, and then at random have them touch your skin with the exposed wires, ever-so-lightly, anywhere 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 determination to acieve 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 your shoes, and remove the metal socket and throw it in the trash. Make sure all the glass is still inside your shoes, put them on and wear them for the rest of the day. For the maximum effect, the glass should be emptied into your socks for a really 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 from the mail room. What do you do???? Take the chair, or go ahead and be polite and stand for the next hour. Aren't you glad that you don't have to choose, because this has only been and 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 increasingly difficult for those affected. Just remember, try to be kind.


Patti, and others here. I do understand your pain, and I want to recommend something that was a large discussion here in March of this year. At that time I learned of the effects that taking Alpha Lipotic Acid have on neutralizing the everyday pain, and actually helps to restore some feeling in your feet and skin. Here in my town, the doctors are actually perscribing the supliment to help those with Diabetes.

I am no nutritionist, but a doctor that was one of our members here, was taking 1800 mg a day and had almost total relief. I started out with 200mg a day and have since raised it to 300mg, and am thinking of raising it to 4 or 500 mg a day. I purchase mine from GNC, so that I can be sort-of assured of some quality control. I started in April, and since that time my cane has remained in the car, and my electric mobility scooter has been used only a few times, when I had to be on my feet for a long time. I used to have to use the scooter to do Walmart, Costco, and other large stores. I always used it for Art, and Car shows, that require loads of walking. Got news for all of you. I haven't used the scooter, but twice, since April.

I highly recommend that you try this one, and see if you can't leave the Neurontin, and all the other Psychotropics behind, and treat yourself to a nice long walk around the neighborhood and come back to the living.

When you start ALA, you need to start with a low dosage, and then work it up, based on your level of relief. I didn't really notice any difference for about three weeks, but then I ran out, and in two days I was in severe pain once again.

If this doesn't work out, at least you tried something that might help. Also God's good old green weed helps considerably, but then that brings out another whole discussion.

Patti, and others here, I hope this helps. I am really serious about this one, and ALA is also supposed to be an immune booster, a point that I am sure will not be lost on some of you.

Now I have to go get breakfast, and I look forward to your introductory post here on aidsmeds. com

Peace, out.

Sincerely Yours
"Living Positive Since '83"



Edited: Tuesday December 14, 2004 at 4:18 PM by Moffie

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