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Author Topic: nueropathy  (Read 4843 times)

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Offline terri

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  • Posts: 5
nueropathy
« on: November 03, 2006, 07:01:38 AM »
I have been positive since the mid 80's. I have always done well without any major medical problems. In July I had 38 Tell's and started on Viramune, Kaletra, Combivir. I am now undetectable and t cell up to almost 200. I have neuropathy now. This started a few months back. Because my ex took me off my insurance, I am now depending on the state for meds and care. I need help . I suppose my question is, can this be reversed is there anything that can be done to help. I am using a wheelchair more and more. B 12 doesn't seem to help at all. Somebody please help me. Thank you
Terri

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #1 on: November 03, 2006, 07:43:45 AM »
Is there a pain clinic near you that can do testing on your legs?  Also, neuropathy is being treated by prescriptions of Neurontin (and one or two other treatments).  This was/is mainly for diabetic neuropathy, but it worked pretty good for me until this last year (I've been taking it for about 6 years, so I guess I built up some resistance?).

But Neurontin is your best bet I think, little or no side effects, it gets processed out thru your kidneys (not your liver like most meds).

Offline terri

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  • Posts: 5
Re: nueropathy
« Reply #2 on: November 03, 2006, 08:40:29 AM »
Clarke, Thanks SOOOOOOOO much for a quick reply. I am in no pain at all. Just problems with balance, walking, my knees are really bad. I am getting into our state system, takes a while. . Will this get better?

Offline dgls44

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!
« Reply #3 on: November 03, 2006, 08:56:48 PM »
~
« Last Edit: December 24, 2006, 12:21:37 AM by dgls44 »

Offline terri

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  • Posts: 5
Re: nueropathy
« Reply #4 on: November 04, 2006, 07:44:06 AM »
i have lyrica, doesn't seem to do much, except sleep. one Dr told me this would help my t cell count? i am getting so discouraged. as i said before, i have no pain, just numbness. WILL THIS GET BETTER. ??

Thanks Terri

Offline terri

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  • Posts: 5
Re: nueropathy
« Reply #5 on: November 04, 2006, 07:49:25 AM »
by the way..

today is my b-day!!!!!!!!!! made it to 50. can't believe it

Offline newt

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  • the one and original newt
Re: nueropathy
« Reply #6 on: November 04, 2006, 09:03:21 AM »
Hello terri

You said: "I am in no pain at all. Just problems with balance, walking"

Rather than neuropathy, this may be down to demyelinization (stripping of the fatty sheath coating the nerves) which affects the effectiveness of the nerves, ie no proper signal to the muscles -  HIV can be the cause of this itself, among the meds AZT is the most notable contributor. 

- matt
"The object is to be a well patient, not a good patient"

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #7 on: November 04, 2006, 03:32:48 PM »
Yo, that's what my neurologist told me too.  Also, since definte origin determination is not possible (too many factors), not much can be done towrds a "cure".  Treatment is difficult for many because anit-deppressants are used, and my system doen't like them.

Terri,  there's no real way of knowing if it's gonna get better or not.  The meds and this virus treat us all in unique ways.  What you're going thru could get better, or.......
I wish there was something more definite to say.

 BUT, if it IS determined the to be demyelinization, from what I've heard/read, the outer sheath can regrow, it does take some years though.  I think it's like an inch a year?  And a lot of that depends upon meds, diet, excercise and just plain bull-headedness.



 

Offline Queen Tokelove

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  • Smokey the Smurf
Re: nueropathy
« Reply #8 on: November 07, 2006, 01:13:43 AM »
Terri,

Sorry, to hear about your pain, yours sounds worse than mine. If it is neuropathy, my id doc put me on Elavil, which is an anti-depressant, I believe. I started on 10, which I was told was the lowest dose they can start you on. I had to have my dose upped today because my pain seem to be getting worse, which my doc explained is prolly due to being diabetic as well as poz. Hope you feel better.
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
Cherish the simple things life has to offer

The Royal Blog

Offline clarke

  • Member
  • Posts: 169
Re: nueropathy
« Reply #9 on: November 08, 2006, 03:39:15 PM »
Well, I'm starting on the Lyrica tomorrow.  25mgs. for 2 weeks, then up to 50 mgs for another 2, then 75.  I've had some sucky reactions to anti-depressants, so the Neurologist is trying me on this in stepped up doses.

How ya doin' Terri?

Offline dgls44

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  • Posts: 69
!
« Reply #10 on: November 09, 2006, 07:50:15 PM »
~
« Last Edit: December 24, 2006, 01:03:31 AM by dgls44 »

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #11 on: November 10, 2006, 09:03:28 AM »
Man, I feel like crud this morning!  :P  I feel nauseous, a little disoriented and feel like I want to "drop" into a hole.  And that's just from 25mg. of the Lyrica.

Is this something I need to get "used" to, or acclimated to?

Offline FiercenBed

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  • Posts: 183
Re: nueropathy
« Reply #12 on: November 10, 2006, 03:14:26 PM »
im taking 75mg and really c no side effects. it helps the pain but not too much for the numbness.
but i have found myself forgeting passwords and phone numbers.

Offline dgls44

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!
« Reply #13 on: November 11, 2006, 10:35:27 PM »
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« Last Edit: December 24, 2006, 01:05:21 AM by dgls44 »

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #14 on: November 13, 2006, 08:21:36 AM »
I use an electric blanket year round to help my feet warm up.  they are extremely sensitive to touch of any kind (trimming toenails, putting on socks, walking is an excercise in agony).  But, I can walk on hot sand, and it'll feel good (whereas "normal" people are hopscotching across the sand).

The Lyrica made me really nauseous, so much so, I didn't eat for over a day.  And that was at the 25mg. dose.

Offline terri

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  • Posts: 5
Re: nueropathy
« Reply #15 on: November 13, 2006, 08:52:13 AM »
good morning,

things haven't going so well the last few days , constipation is getting to be a problem with the neuropathy. i feel much better today. i am going to walk,walk, walk!!!!!!

THINGS ARE GOING TO GET BETTER, GOD IS IN CONTROL.
TERRI

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #16 on: November 13, 2006, 06:37:31 PM »
Terri?  I've not heard of neuropathy being associated with constipation.

Is it because you aren't as mobile as your system may have been used to being?

Offline Jerry71

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  • {Lexiva, Norvir, Complera} Still Breathing!!!
Re: nueropathy
« Reply #17 on: November 13, 2006, 07:14:59 PM »
Terri sorry to hear about the neuropathy I can relate to this also I have been taking Gabapentin for over a year now and I'm up to taking 1200 mg aday I still have problems with tingling in my feet and at time it is hard to walk very far. So hope you get the right meds to take and hope things get better for you in the future.

Offline dgls44

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  • Posts: 69
!
« Reply #18 on: November 14, 2006, 03:35:38 PM »
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« Last Edit: December 24, 2006, 01:07:01 AM by dgls44 »

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #19 on: November 15, 2006, 07:30:18 PM »
Hey Doug?  Doesn't the Tegretol also screw with the white blood cell count?  I know Litium does, as the side effects from that are what got me sicker.

Anyone here know about Trileptal?  Got scripted for it today, and am very skittish on this.  I posted in another thread that it's for Epilepsy and Bi-Polar, and the only neuropathy that it had a reference to was with facial neuropathy.

I'm just about ready to quit being a guinea pig.  I know that what is found about side effects is helpful.  I'm just tired of getting up looking and feeling like s__t the next day from one or another different med this MD wants to try. 


Offline dgls44

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  • Posts: 69
!
« Reply #20 on: November 16, 2006, 01:48:41 AM »
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« Last Edit: December 24, 2006, 01:10:09 AM by dgls44 »

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #21 on: November 16, 2006, 08:24:10 AM »
Yeh Doug, I went thru their tests, as these guys up here had no "baseline" to work with.  The only other test I had been given was about 1998, and I don't remember who gave it to me.

The tests did indicate that I have "severe" neuropathy in both feet, ankles and lower legs.  My left leg seems to be worse than my right for some reason (I think it's becasue it was my "pivot" leg at work).

I took the Trileptal last night, and seem to be "okay" today, which is nice.  However, my feet feel no different/better or less painful. 

Offline dgls44

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!
« Reply #22 on: November 16, 2006, 10:05:36 AM »
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« Last Edit: December 24, 2006, 01:21:36 AM by dgls44 »

Offline clarke

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  • Posts: 169
Re: nueropathy
« Reply #23 on: November 17, 2006, 10:43:37 AM »
The 1998 test can't be compared, as I don't remember where it was done or who did the testing.  I do know I was the first patient he had with AIDS related neuropathy.

All I know is that last year, as I was on my feet more (full time job at Whole Foods), the pain started getting worse, and by October, I had to get my MD to get me a note to have me put on a part-time basis.  Then even 20-24 hours weekly got to be too much for me. 

I can stay on my feet for up to about 30 minutes or so, then I have to sit and rest from the effort and pain.  At the end of the day, it's pretty much all I can do to get around the house until I take my Elavil and Lorazopam.

The Trileptal hasn't done much good but to keep me awake, and no relief as far as my feet and legs are concerned.

Offline sally

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  • Posts: 17
Re: nueropathy
« Reply #24 on: November 17, 2006, 05:05:52 PM »
If you haven't seen a neurologist with HIV experience, do so. Neuropathy can have many causes. Low B12 is only one of them and you can easily get a B12 test to see if your level is normal. I've had neuropathy for years that was probably caused by DDI and/or D4T that I took back in the "olden days" when I was in clinical trials at NIH, but my symptoms are minor compared to yours. I have a neurologist who has a special interest in HIV-related neurological disorders and you should seek same. Good luck.

 


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