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Author Topic: NEW Place for LULA  (Read 2863 times)

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Offline lula

  • Member
  • Posts: 4
NEW Place for LULA
« on: September 10, 2007, 08:46:00 AM »
Hi.. everybody out there, (I was told to post this here also) this is new for me and infected now sense 1996.  A long time
and my question to you all is, has anyone out there had  problems with numbness to there toe's
I just started going through this and is really annoying I already made an appointment
w/ my Dr. witch I hate to see and have had so much bad experience w/ them.
And this is why I'm asking this question. And could  you girls also recommend a good
clinic in NYC. Now I'm getting a bit scared

Thank you all and glad to be here.

Offline ubotts

  • Member
  • Posts: 347
Re: NEW Place for LULA
« Reply #1 on: September 10, 2007, 10:20:47 AM »
 :)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline ubotts

  • Member
  • Posts: 347
Re: NEW Place for LULA
« Reply #2 on: September 10, 2007, 10:22:22 AM »
Sory my first post didnt take.
I lived in nyc for yrs and one of the great places for infectious diease centers
is in the bronx..Its Monteforie Hospital..check it out.
Or you can choose many in Manhattan as well..good luck
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline aztecan

  • Member
  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: NEW Place for LULA
« Reply #3 on: September 12, 2007, 12:28:38 AM »
Howdy Lula!

I'm glad you're here and have joined in.

Regarding the numbness in your toes, etc., what meds are you taking? Have you ever taken D4T (Zerit)?

What you are describing sounds suspiciously like peripheral neuropathy. I would certainly ask the doc about it. It can be caused by some of the meds and there is a theory HIV itself may be a cause as well.

Let us know how things go.

HUGS,

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

Offline lula

  • Member
  • Posts: 4
Re: NEW Place for LULA
« Reply #4 on: September 13, 2007, 06:18:27 PM »
Hi Mark ,.. yes I did take Zerit a long time ago and now I'm taking Sustiva and Truvada witch I just started to take in June some time and I think this is when the numbness started? I'm have a Dr. Apt tomorrow so I will see what she says.. hopefully I could take something for it soon, is beginning to bother me allot. I do alto of walking with my son.
and I fell so crippled


thank you for your concern...

Offline J.R.E.

  • Member
  • Posts: 6,969
  • Joined Dec-2003 Living positive, since 1985.
Re: NEW Place for LULA
« Reply #5 on: September 13, 2007, 06:56:36 PM »
Hello Lula,

Welcome to the forums. As far as the numbness in the toes,...I was also on Zerit, very briefly, when I started on HAART back in October of 2003. I wasn't on that drug much longer than 45 days, until I was changed to Ziagen.

I also have the numbness in the toes. Actually both feet are numb, almost up to the ankles, and have a very cold, frostbite type of feeling. Some days can be worse than others, but at the current time, I take no pain medication, or any other kind of medication for it. I was diagnosed with neuropathy in 2004, and it started probably 4 months or so after starting on meds. Dapsone can also be responsible for neuropathy.

I believe in my case however it was due to advanced HIV infection at the time, and the fact the I had gone so long before starting on medication.

"HIV itself has also been shown to cause nerve damage, usually in people with seriously suppressed immune systems. In most HIV-positive people, however, peripheral neuropathy is a side effect of the medicines they use certain drugs, including those used to treat HIV and certain AIDS-related infections, can damage peripheral nerves and eventually lead to symptoms of neuropathy."

Good luck with the doctors appointment tommorrow. Let us know whats going in.


Here's a link also, for some info on PN :

http://www.aidsmeds.com/articles/Neuropathy_6910.shtml



Take care-------Ray

« Last Edit: September 13, 2007, 08:00:45 PM by J.R.E. »
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 April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline noahsark

  • Member
  • Posts: 19
Re: NEW Place for LULA
« Reply #6 on: September 15, 2007, 12:46:50 AM »
can y'all tell me more symptoms of PN?  I have it, but also tendon pain and electric shock feelings, sprained ankle feelings and finger, joints and hand pain/numbness.  Also restless leg thing too.  Any fellow suffer es out there?  chime in please------------thanks Lisa

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,635
  • Diagnosed + 1989
Re: NEW Place for LULA
« Reply #7 on: September 15, 2007, 08:00:09 AM »
I've had PN since the early 90's after being on mega-doses of AZT.  I'm also diabetic, which can make it worse.  I take Neurontin for it and that seems to control it somewhat.  I have the shooting pain thing, my feet always feel freezing, and I sometimes get horrific cramps in my feet where I have to jump out of bed and walk around. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline noahsark

  • Member
  • Posts: 19
Re: NEW Place for LULA
« Reply #8 on: September 17, 2007, 11:28:32 AM »
HOW FAST DOES IT PROGRESS?   I SEEM TO BE GETTING WORSE ALMOST DAILY.  I"ll see my doc on the 26-should I ask for a medicinal help?  I am taking cymbalta.  I believe I had said lyrica previously but it is cymbalta and not lyrica.  I mess up on drug s I'm taking sometimes-I've been thru many.  Can't even remember them all-my short term memory sucks.  I can watch a movie 2x and neverremember the first.  Is this virus related? or drug related?  I feel sort of freaky sometimes.  Years ago I had a friend with PN and he couldn' even have a sheet on him.  It was close to the time he passed, butcan PN get there without it meaning we're gonna die soon?  Does it worsen at different rates for everyone?  Anyway I just worry too much I guess.  Thanks for writing back the first time-if you have any other info it would be much appreciated.  Later, Lisa

Offline J.R.E.

  • Member
  • Posts: 6,969
  • Joined Dec-2003 Living positive, since 1985.
Re: NEW Place for LULA
« Reply #9 on: September 19, 2007, 07:41:22 AM »
HOW FAST DOES IT PROGRESS?   I SEEM TO BE GETTING WORSE ALMOST DAILY.   Does it worsen at different rates for everyone?  Anyway I just worry too much I guess.  Thanks for writing back the first time-if you have any other info it would be much appreciated.  Later, Lisa

Lisa,

In 2004 my PN was so bad, I could barely keep a pair of shoes on my feet. It's different for everyone. Even driving a car (pushing the brake, gas and clutch was painful. But things did improve quite a lot for me. As my t-cel count went up, and my viral load dropped to undetectable, the PN diminished quite fast. I doubt it will be completely gone.

Mention this to your doctor on your next visit. My doctor suggested to me, that when/should the time come for medication, he has been prescribing Lyrica to his patients, with good results.


Take care of yourself----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 April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline J.R.E.

  • Member
  • Posts: 6,969
  • Joined Dec-2003 Living positive, since 1985.
Re: NEW Place for LULA
« Reply #10 on: September 19, 2007, 07:22:21 PM »
Lula, Lisa,

Here's a link regarding Neuropathy, and some tests for it :

http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/hiv_aids.shtml

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 April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

 


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