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Author Topic: peripheral neuropathy  (Read 10584 times)

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Offline Graway925

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  • Posts: 13
peripheral neuropathy
« on: July 10, 2006, 02:33:49 PM »
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 thing..is 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,
Ron

Offline pozniceguy

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Re: peripheral neuropathy
« Reply #1 on: July 10, 2006, 05:13:43 PM »
Graway,
 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.
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Graway925

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Re: peripheral neuropathy
« Reply #2 on: July 10, 2006, 05:25:08 PM »
Hi POZNICEGUY,

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 thing...is 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,
Ron

Offline J.R.E.

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Re: peripheral neuropathy
« Reply #3 on: July 10, 2006, 06:32:00 PM »
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
Tim
"Living Positive Since '83"

IF YOU ARE NOT APPALLED, YOU ARE NOT PAYING ATTENTION ............You can quote ME on that!

MY BLOG

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




You can click below, for the entire thead :


http://www.aidsmeds.com/Fusetalk/messageview.cfm?catid=5&threadid=16999&FTVAR_MSGDBTABLE=




Ray
 
 
 
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
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Offline J.R.E.

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  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: peripheral neuropathy
« Reply #4 on: July 10, 2006, 06:42:37 PM »


And Here is another link :


 http://www.atdn.org/simple/neurop.html
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline allopathicholistic

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  • Posts: 3,258
Re: peripheral neuropathy
« Reply #5 on: July 10, 2006, 11:13:53 PM »
HI RON. The NIH is doing a clinical trial. I'm providing you the webpage just in case you like to follow PN news and/or if you like to "think outside the box" ... Who knows, maybe they're still looking for participants

Here it is http://www.clinicaltrials.gov/ct/show/NCT00317291

ALL THE BEST, ALEX

Offline newt

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  • the one and original newt
Re: peripheral neuropathy
« Reply #6 on: July 11, 2006, 03:55:28 AM »
Hey Graway, hello

If your PN is worse on one side than the other, it's unlikey to be drug related, more likely to be neurological.  Drug-related PN tends to by symmetrical. - matt
"The object is to be a well patient, not a good patient"

Offline Graway925

  • Member
  • Posts: 13
Re: peripheral neuropathy
« Reply #7 on: July 11, 2006, 06:58:32 AM »
Hello all,

THANKS for the great replies.  I sure wish I didn't need to wait until the middle of September to see a neurologist.  Here in the Ft Wayne, IN area one office has that specialty tied up.  I could drive to Chicago or Indianapolis...and...I don't want to start doing that unless absolutely necessary. 

I am hoping my problem is related to a prior back problem instead of HIV med related.  For some reason the doc who did the EMG feels it's not back related.  My primary care doc felt since the PN was not equal in both legs it was most likely not med related.

As I wrote earlier...my ID doc knew about this a few years ago...and shrugged it off.  Much in the same manner she told me a lump in my forearm was a "pinch" or bruise.  WELL, I told her about that "pinch or bruise" for over two years.  I finally had to insist upon seeing someone about it.  Turned out to be a benign tumor which was promptly removed.  This was back when my ID doc was also my primary care doc.  I am so glad I now have a primary care doc.  He's a great guy...  I guess better later than never...   My ID doc used me as sort of a guinea pig with KITCHEN SINK therapies...I'm sure most of you know what that terms refers to.  This means taking any and all anti-HIV drugs ones body can handle.  Sad thing...is that my liver did not agree with this mentality.  I ended up having thrombocytopenia(loss of platelets), vitiligo, and cholesterol counts in the 700's that no amount of dieting or meds could take care of and a variety of other medical maladies that would take several paragraphs to explain.  I guess I should take at least part of the blame...I told them I was wiling to experiment...instead of sitting idly by dying without knowing I had done my best to beat this disease.  WOWEE...hindsight is always 20/20.

MORE about that another day...I'm in too good of a mood to get into that right now...lol.

THANKS again guys for the replies...I appreciate all the input I can get.

Have a great day,
Ron

Offline clarke

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  • Posts: 169
Re: peripheral neuropathy
« Reply #8 on: July 11, 2006, 11:11:03 AM »
I've had peripheral neuropathy (lower legs and feet) since 1995.  I believe it is a result of the meds that were out at that time (I cannot remember which one it was).  Up until 1999, it was extremely painful to walk, much less put on socks, shoes or even go barefoot.

I went to a pain clinic, and they tried Elavil and found I could only deal with 25 mg. (I'm 6' 5" tall and about 205).  Then they started trying Neurontin, and it was like "magic".  I lived on samples of Neurontin until it was allowed on the TN. formulary.

My feet still hurt, but not as bad.  I've broken toes without knowing they were broken, as well as my left ankle.

Anyhow, the Neurontin has been a "lifesaver" for me, as no more scooters in Walmart, Sams and stores like that.

Offline clarke

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Re: peripheral neuropathy
« Reply #9 on: July 11, 2006, 11:23:09 AM »
I almost forgot to add, my neuropathy makes my skin extremely sensitive but for some reason, kind of "numbs" the inside (thereby broken toes and an ankle).  The sensitivity of my feet is irregular though, in that a very small pebble or something like that can cause extreme discomfort.  But, I do not feel the heat of the sidewalk or sand on a sunny/hot day.  I feel the sensation of it, but not directly (does that make sense?).

Offline clarke

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Re: peripheral neuropathy
« Reply #10 on: July 11, 2006, 12:09:11 PM »
Hmm, just got a call from my MD.  She said I could quit the Truvada (I had called her, having concerns about the seemingly multiple side effects put on their website as of March).

Anyhow, it seems I have the antigens and not the antibodies for Hep "B".  She told me it was her mistake in not going back far enough in my file (we've had her less than 3 years), and read I had "cleared" having Hepititis "B".  It seems I'm back on Combivir.

Offline newt

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Re: peripheral neuropathy
« Reply #11 on: July 12, 2006, 03:40:07 AM »
I don't understand your doc's logic Mr Clarke...why go back on Combivir?
"The object is to be a well patient, not a good patient"

Offline clarke

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Re: peripheral neuropathy
« Reply #12 on: July 20, 2006, 12:25:32 PM »
It's what I've been on for almost 4 years.  I was put on Combivir not long after I got the "sludge" from Crixivan.

I feel better being back on the Combivir than I felt on the Truvada.  I still was never sure about being reccommended to get on Truvada.  I guess the MD's thought my Hep "B" was "active", when actually it isn't.  I read there is a difference between "antigens" and "antibodies".

I have the "antigens" for Hep "B", and not the "antibodies".  Can someone here elaborate in laymens speak about the difference?

Offline jack

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Re: peripheral neuropathy
« Reply #13 on: August 08, 2006, 10:34:11 AM »
I have been having unusual "shots" of pain in both knees,legs,and ankles. It usually happens when I am resting. Is this neuropathy??  I had all the tingling and numbness back in 90s on the hiv drugs but havent had any problems since. This is really wierd. Not similiar to leg pain from bad back.  on truvada,norvir,tmc114.

Offline icheb15233

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  • Posts: 3
Re: peripheral neuropathy
« Reply #14 on: September 13, 2006, 04:28:46 PM »
GRAYWAY
 I have had PN for many many years! I also had a very traumatic back injury i fractured lamina and herniated disks i have had MULTIPLE Back surgeries and am left with degenerative Disk disease & Rods in my spine after several fusions of the disk space. my PN hit me fast and furious after being put on my first cocktail DDI D4T and viracept!! NOT the combo to give someone who has pre existing nerve damage from the back injury!!! It also didn't manifest in what my dr considered the " normal way" ( although every account i have heard since i developed mine developed with the same burning pain like fire in the feet and legs) Anyway the Dr kept telling me it was all in my head and despite my INSISTING that it was in my legs she ignored me. Until one day I called her from my Ceil on the way in and told her SHE WILL SEE ME WHEN I GET THERE I WAS IN TEARS it hurt so bad!!! Finally after months and months and months actually almost a year of the progressive pain she relented to my insisting on an EMG. Sure enough it was PN and the damage had been done by the time the diagnosis came down. This just made me even more angry at my dismissive Dr (if that was possible) and I took out my cell phone AND FIRED HER RIGHT THEN AND THERE!! I picked up my records the next week and saw a new HIV Dr. We tried elavil I am allergic to it, We tried neurontin and that just made me sleepy and in pain and i was at 3800mgs a day with no relief!! Finally my HIV Dr sent me to a pain clinic and I had to reluctantly go onto a narcotic pain cocktail to even be able to regain any quality of life. one of the meds in my pain cocktail was topomax, a seizure drug it helped a little after they added it. I tell you about the topomax because about 4 months ago they took me off the topomax and put me on something new called Lyrica and OMG WHAT AN IMPROVEMNT !!! I still use my cane but i am getting around SO SO MUCH better and that has had an impact on the amount of narcotics I am taking  ;D, which is a good thing!!!! I also thought this had to be related to my back since it hit so hard and fast, sadly it wasn't.  My point  through all this rambling is that there are medications that help the Lyrica for me is a godsend, I still cant feel hot pavement or hot sand and yes it does feel like there is glass in my shoes but it is dull now compared to when it first hit. I know this doesn't sound wonderful butTRUST me I couldn't walk when this first started and i was not active at all throughout the time my dr was ignoring me. NOW I HAVE A LIFE I walk and go places and do things I have a quality of life back and i am grateful!!
 I do think Dr's tend to dismiss certain complaints because they don't fit the norm or THEY can't explain them like the situation with your arm. Like i Said I FIRED my dr on the spot and got a new one altogether, one that listens and investigates my complaints. To me i MUST HAVE A DR THAT LISTENS AND WORKS WITH ME AND NOT JUST FOR ME and we together make a team. Good luck with the neurologist please let us know how it goes.

Offline alive2

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  • Posts: 78
  • i guess im having a good day
Re: peripheral neuropathy
« Reply #15 on: September 16, 2006, 12:37:09 AM »
i have had pn for almost 3 years,i have been taking neuorotin.and it seems to be helping me.but its difficult to fully appreaciate it as i have a tear in my  acl.but the 600 2 times daily seems to releive it ,even thou i may take more i feel it isnt needed till it gets worse,i dont want to over medicate for a few good days,i want the meds to continue to work as they are desighned to.i have been i 5 car wrecks along the way in life,and all ct and xrays are negitive,thank god.as you it is starting to move up to my hands.ask your doc mabey there is a med that wont tax your body and do more help than harm,hope this helps,take care

Offline alive2

  • Member
  • Posts: 78
  • i guess im having a good day
Re: peripheral neuropathy
« Reply #16 on: September 16, 2006, 12:41:38 AM »
GRAYWAY
 I have had PN for many many years! I also had a very traumatic back injury i fractured lamina and herniated disks i have had MULTIPLE Back surgeries and am left with degenerative Disk disease & Rods in my spine after several fusions of the disk space. my PN hit me fast and furious after being put on my first cocktail DDI D4T and viracept!! NOT the combo to give someone who has pre existing nerve damage from the back injury!!! It also didn't manifest in what my dr considered the " normal way" ( although every account i have heard since i developed mine developed with the same burning pain like fire in the feet and legs) Anyway the Dr kept telling me it was all in my head and despite my INSISTING that it was in my legs she ignored me. Until one day I called her from my Ceil on the way in and told her SHE WILL SEE ME WHEN I GET THERE I WAS IN TEARS it hurt so bad!!! Finally after months and months and months actually almost a year of the progressive pain she relented to my insisting on an EMG. Sure enough it was PN and the damage had been done by the time the diagnosis came down. This just made me even more angry at my dismissive Dr (if that was possible) and I took out my cell phone AND FIRED HER RIGHT THEN AND THERE!! I picked up my records the next week and saw a new HIV Dr. We tried elavil I am allergic to it, We tried neurontin and that just made me sleepy and in pain and i was at 3800mgs a day with no relief!! Finally my HIV Dr sent me to a pain clinic and I had to reluctantly go onto a narcotic pain cocktail to even be able to regain any quality of life. one of the meds in my pain cocktail was topomax, a seizure drug it helped a little after they added it. I tell you about the topomax because about 4 months ago they took me off the topomax and put me on something new called Lyrica and OMG WHAT AN IMPROVEMNT !!! I still use my cane but i am getting around SO SO MUCH better and that has had an impact on the amount of narcotics I am taking  ;D, which is a good thing!!!! I also thought this had to be related to my back since it hit so hard and fast, sadly it wasn't.  My point  through all this rambling is that there are medications that help the Lyrica for me is a godsend, I still cant feel hot pavement or hot sand and yes it does feel like there is glass in my shoes but it is dull now compared to when it first hit. I know this doesn't sound wonderful butTRUST me I couldn't walk when this first started and i was not active at all throughout the time my dr was ignoring me. NOW I HAVE A LIFE I walk and go places and do things I have a quality of life back and i am grateful!!
 I do think Dr's tend to dismiss certain complaints because they don't fit the norm or THEY can't explain them like the situation with your arm. Like i Said I FIRED my dr on the spot and got a new one altogether, one that listens and investigates my complaints. To me i MUST HAVE A DR THAT LISTENS AND WORKS WITH ME AND NOT JUST FOR ME and we together make a team. Good luck with the neurologist please let us know how it goes.
icheb,im going to ask my doc about the medication you are on,i know the 1200 a day im taking must seem like babies work but it does help me some,but there is the stomach discomfort,so naturaly theres more meds for thatthanks for the unitentinal information,take care

Offline dgls44

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!
« Reply #17 on: September 26, 2006, 02:46:51 PM »
~
« Last Edit: December 24, 2006, 12:18:56 AM by dgls44 »

Offline greatcyber

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Re: peripheral neuropathy
« Reply #18 on: September 29, 2006, 05:49:55 PM »
I have been sufferring with PN for about 10 years nows.  Have tried everything that has come down the pike, from clinical trials to psych meds and neurontin.  Problem with the meds was that the only thing they seemed to accomplish for me was to make me feel 'disassociated' from myself.  I always felt as though I were watching myself as if in a dream.  I started second-guessing myself when driving, i.e. did I use the blinker, where am I?

I finally stopped all that stuff and bought myself a REBUILDER, which is like a TENS unit, except that the leads go into a water bath with epsom salt and silver oxide.  It comes with a basin with two 'bowls', one for each foot to go in.  The stimulus is controlled by you, as you can tolerate it.  It sort of feels like a massage and it improves circulation a lot.

Problem for me was that nothing ever lasted much longer than treatments.  I also have lower back disc problems and for years have seen specialists about it.  Since I am positive, most docs have simply said that it had to be PN, even confirmed it with EMGs about 10 times over the decade.  HOWEVER, I recently went to a surgeon (neurologist/back specialist) and told him my history.  I'm sick of taking narcotics for pain as it only tends to be a viscious circle with the body beginning to tolerate the narcotics, thereby requiring higher doses.  At one point I was up to 160 Mg of Oxycontin three times a day!  Enough to kill Mr. Ed and then some.  I took a year to wean off of it, only to have to go back on after a few weeks as I simply could NOT stand the pain.

As it turns out, I have absolutely NO disc left at L5-S1, with all the lumbar area being suspect.  Will find out on Monday how extensive the problem is as I had to have yet another MRI since my last one was not all that clear.  Apparently, open MRIs are not as good as closed units.  Anyway, on Wednesday next, I will undergo a spinal fusion and the surgeon has told me that there is a 90 % chance that I will finally have relief.

Surgery on the back is scary, but quality of life is more important to me.  I don't want to face another 10 years of pain and narcotics.  Will let you know how it turns out for me.
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Offline jntmax39

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Re: peripheral neuropathy
« Reply #19 on: September 30, 2006, 03:59:25 PM »
 

I also have suffered from NP I do have diabetes and also am hiv poz. I understand the pain. It is very frustrating. I thank you all for giving info regarding NP. My VL and CD4 is great,I just don't understand why it's getting worse. I have no Quality of life. My ID doc treats me with lyrica. After all other treatments. Theres also another kind of treatment  It is called Anodyne treatments,It is none evasive. It Is like Physical therapy. They put it on your feet and legs(like electrical waives) It did help me. But my INS>will not cover it anylonger. I started getting feelings back into my feet and legs. Just thought I would throw that out for who ever Can be lucky enough To get physical therapy.
« Last Edit: September 30, 2006, 04:03:04 PM by jntmax39 »

Offline greatcyber

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Re: peripheral neuropathy
« Reply #20 on: September 30, 2006, 08:50:47 PM »
I can truly appreciate what you are going through with the PN pain.  I tried Lyrica as well.  Also Mobic, et al.  Why not check out this website:  www.rebuilder.com and see if you think this will help you.  Since you stated that the therapy with the electrical impulses worked, this may be what you are looking for.  When I bought mine, it was about $150.  Well worth the relief.  My only problem has been my back problem with pinched nerves and herniated disks and a few others as well as the PN.

I have also tried Magnesium and Calcium for about 6 months in doses of about 500 Mg twice a day.  Alpha Lipoic Acid seems to provide some relief as well.  Neurontin seems to help diabetic neuropathy, however.

Best wishes.
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Offline dgls44

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« Reply #21 on: October 02, 2006, 02:38:02 PM »
~
« Last Edit: December 24, 2006, 12:19:40 AM by dgls44 »

Offline greatcyber

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Re: peripheral neuropathy
« Reply #22 on: October 12, 2006, 03:53:44 PM »
Even though my REAL problem has been a grade II spondylolesthesis at L5-S1 with some narrowing (stenosis) in all the lumbar vertebra, I have ALWAYS tested positive for neuropathy.  But when bone is on bone, not bone on disc, especially L5-S1, the nerves that radiate down your thighs, shins and into your feet and toes are naturally compressed.

Since my disc was so severely ruptured, as to the point of their being No disc left, a spacer, probably titanium was placed where the disc should have been.  Then the surgeon cut off the back wing-like area on the vertebrae and ground them up like hamburger.  Then he placed the mushy bone in the tray and put it into the space where the disc normally would be.  To hold it together until total fusion can occur (normally 3 months) he inserted 4 screws to keep it all secure.  The screws will stay there forever.

Honestly, it's only been 9 days since my surgery, and other than the pain from the swelling at the incision site and the staples hurting a bit, it's almost as if I haven't even had surgery!  There is no other pain.  The PN I had been experiencing for 10 years is now gone and simply a bad memory.  Once I no longer need the pain meds, I will wean off of them and then be able to enjoy life again without the numbness, pain, heat and sensitivity to lack of sensitivity I endured.  Also, no more constipation and urine retention/hesitation, dry mouth and other assorted side effects of the large doses of narcotics.

Surgical techniques as well as drugs have come a LONG way with technology on our side.  I had heard horror stories all my life about people having failed back surgeries.  God, I wish I had done this surgery 10 years ago.  It's absolutely amazing.

For people who aren't quite ready to contemplate spinal surgery, even those with failed surgeries, there is a new technology out there called the DMS9000.  It was discovered anecdotedly at NASA during space flight.  It is a contraption that you lay on and it has supports under your armpits and a wedge-like pillow that goes under your lower legs.  The machine alternately stretches and releases your spine.  It allegedly has an 86% success rate, even for those with FAILED BACK SURGERY!

You might want to google it for your area.  If it's not DMS9000, it's DRS9000.

Best Wishes.  Stephen
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Offline greatcyber

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Re: peripheral neuropathy
« Reply #23 on: October 15, 2006, 11:39:49 PM »
You also have to remember that neruopathy is different for every person.  Some of it comes from the meds, some from the disease, it really matters not when you suffer it.  Consider the fact that Diabetic Neuropathy is COMPLETELY DIFFERENT than HIV-related neuropathy, therefore the way you attack and treat it has to be different.  When possible (and affordable) holistic methods are an incredible way to go.  Problem is, some peoples' PN can be quite advanced therefore needing more severe treatments approaches.

Education seems to be the one thing that you can rely on and to discuss truly viable options with your physician.  If your physician seeems confused or that "one fix fits all" then it might be time to reevaluate who you have placed the care of your treatment in the hands of.  Learn all that you can.  Don't just listen to other people out there who claim to have had PN for years.  Find out what other countries are REALLY doing for their own citizens, especially university programs.  There have been some incredibly promising clincial trials during the past decade, but unfortunately, more of them fell by the wayside or were proven to do no better than a placebo, so it was back to the lab for some more research before the next trial.  Believe me, I have and would have, tried everything short of sacrificing a chicken!  Magnesium and Calcium, ALA, green algae, khombuka mushroom tea/juice, accupuncture, TNS therapy, Magnets, shoe inserts, orthotics, electro-stimulation.  Just about every psych/seizure disorder/anxiety you-name-it pill, including 3200 Mg of Neurontin and that just wasn'nt really what I would call a life.

I always gave sometihing time to really see if it worked or not; at least 6 months, to make sure.  Too bad I always seemed to have the same pain/numbness/feeling(ness) only I either didn't have the coordination to wipe my own nose or stammerred for words or second-guessed myself when driving the car...how the hell did I get home tonight?  I just couldn't take any of that crap.  Quality of Life is WAY more important to me than getting used to pain.  Trouble is, I am a real wimp when it comes to pain and moaning and crying and even wailing are not beneath me.  I want relief and I want it NOW, dammit!

It's just too bad that there isn't some magic wand that someone can wave over you (oh yeah, I tried Reiki, too) and make everything all better.  And cleansing your chakras isn't always going to do the trick and take away the excuciating pain while experiencing numbness at the same time 100% necessarily.  So do what I did.

Try everything that you hear about.  Do research on different countries therapies.  Try the most basic things, sometimes they help the best and cost the least.  Try and have faith and a positive attitude, they will carry you farther than any drug.

But, take the drugs if that is the only thing that is going to make you feel better.  I wound up on narcotics for almost a decade and I suppose I don't even realize what it is like to feel normal anymore.  However, even though I am medically addicted to narcotics, I have never gotten a high sensation from the narcotics, only the masking of pain that I experience.  It's still there, only it doesn't really matter that much, or at least it seems easier to forget about.  Until I try and stand for too long, or do something a little too physical (too bad I like the gym a lot), or walk too long, or go up a hill or down a steep staircase.  It has made travel a real challenge.  But it hasn't stopped me one iota.  I refuse to let it.

When I underwent low back surgery last week for the problem, because I was SURE my back problem was the REAL cause of my PN, but most of my docs during 10 years have always just said it was HIV-related.  That's why I say that all doctors shouldn't be treated as gods.  They only go to school to learn what to do and there are some very good one and some very poor ones out there.  Many run the equivalent of a puppy mill with patients in and out every 10 minutes, no matter the issues at hand.

Scary, scary.  I thought for sure the surgery corrected my problem the 4th day after surgery when I noticed me feet feel, well, normal again.  That lasted almost a week.  Now the same old pain that was there before is back again, and I'm still on the same meds, but it's not even 2 weeks yet and I still have the staples in my back.  So, I'm going to give it more time to wait and see.  My husband tells me that the surgeon said that it was normal for pain and feeling to come and go for many months, depending on how long it takes the trauma caused by bone sitting on bone for so long and crushing the nerves for almost 10 years.

So I sit here and cross my fingers.  An wear the back brace the surgeon gave me.  I perhaps overdid it the past few days, since I have felt so good and was even up on a step ladder when I was scolded and told not to do THAT again!  And to go inside and write some things down and try to relax.

Try to relax, heh, it's a great idea if it's actually achieveable.  But at least there are the drugs that make it all so much easier to take.  Right now, I don't hurt and don't care about too much else.  I know that later on, I will.  And so will tomorrow be the same.  But every day will get a little better and I will get a little stronger until, one day, I will abe able to go back into the gym and enjoy a hard workout that doesn't fill me with pain in the wrong way.

I just want you all to know, that it isn't something that will go away on your own, unless you happen to have a grilled cheese with a Virgin Mary on it, or something.  Be proactive and try everything until you find something that works for you.  It might be as easy as myo-fascial release massage.  You can even do that for yourself!

But if you also have back pain history, do yourself a favor, and get an MRI.  It just might change your life.
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Offline Queen Tokelove

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Re: peripheral neuropathy
« Reply #24 on: October 17, 2006, 08:49:13 PM »
What is the difference between pn in hiv from pn from diabetes?  I have diabetes so am I gonna get slammed twice as bad? My id doc prescribed Elavil. It worked for me and also helped me to sleep the first couple weeks. I have just started having these pains earlier this year. I'm sure my pain is not as bad as some that I read on here, but I was in pain so bad one night, I wanted to just rip my legs off. I was in complete tears.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
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Offline tigger2376

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Re: peripheral neuropathy
« Reply #25 on: October 18, 2006, 06:51:19 AM »
Theres a drug available in UK called gabapentin/neurontin. Works for me but a lot of docs don't like to prescribe it because its so expensive. I've fould that shiatsu massage helps too. I've actually been accused of being drunk at 8am in the morning because I couldnt feel my feet and therefore balance! Having developed PN before meds I'm really worried it'll get worse, you have my total empathy, its a bore getting 'legless' without the booze!
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline greatcyber

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Re: peripheral neuropathy
« Reply #26 on: October 24, 2006, 04:32:05 PM »
Neurontin is available in the US as a generic drug.  It helps some folks, didn't do it for me.  I had to take too much and felt like a zombie all the time.  Lyrica and Mobic didn't work.  Really, only massage, accupuncture, nerve stimulation and the rebuilder have helped.  The rebuilder is just a TNS unit that you use while your feet are in warm water.  It send electrical impulses up your spine to your brain and it also increases circulation in your legs/feet.

As for being diabetic and having HIV, I don't believe you will be hit doubly hard.  Since you are diabetic, you might ask your doc to let you try Lyrica.  Personally, I don't care for drugs that alter my mind, hence I never liked taking anti-seizure or antidepressants, even though they can really work well for some folks.

It has been 2 weeks today since my back surgery and even though I was THRILLED 4 days after surgery and had no more leg/feet pain, it HAS come back.  I'm hoping that it is a temporary thing while the nerves heal.  I honestly don't want to spend the rest of my life on narcotics.  I guess if it doesn't get better, I'll consider having another surgical procedure to have a nerve stimulator implanted.  They can also implant morphine pumps.  You require a lot less medication that way, but it is still living on narcotics.  Yuck!

The test with the needles under the skin is just another type of EMG.  I've had about 10 or 12 of them over the years.  I already KNEW I had pain, but they wanted to document it.  I'm back to being miserable again with the pain in my feet now worse than before the surgery.  Again, I hope it will resolve in time.   I will start physical therapy in about 2 weeks.  That will be 4 weeks since the surgery.  I can walk fine, but have a hard time sitting and especially rising from sitting.  Have to put my hands on my thighs and push off like doing a bench press.  I'm glad I'm a gym person for the past few years.  Otherwise this would be so much harder for me.

If you google clinical trials of PN you'll get a lot of info.  Or just google peripheral neuropathy and there will be more than you can ever read.  Remember, not everything works the same for everybody.

Wishing you all well.

Stephen
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Offline allopathicholistic

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Re: peripheral neuropathy
« Reply #27 on: October 27, 2006, 01:11:57 AM »
The Oct 2006 Feet First article mentions eliminating booze or cutting back on it is probably a good thing http://www.poz.com/articles/1801_10337.shtml

 


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