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Author Topic: help, Guidance, anything uggggh  (Read 4371 times)

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Offline mikeyb39

  • Member
  • Posts: 933
help, Guidance, anything uggggh
« on: November 23, 2011, 08:47:23 PM »
Hi all,
I'm typing this trying to keep myself from having another horrible panic attack.  i mentioned a while back that i was having numbness in my left hand/wrist and arm, tingling and so forth. I went to the doctor and he sort of diagnosed it as being carpal tunnel syndrome.  I then went to an orthopedic and he advised it was probably carpal tunnel or Ulnar nerve entrapment, but needed further tests such as EMG etc.  i was supposed to go back but just haven't had the time lately with work and such. 

Last week my legs were feeling heavy like restless leg syndrome, but not twitching or nothing  I'm sort of a hypochondriac so i searched and convinced myself its something real bad like MS, neuropathy, or something like that.  I ended up with horrible panic attacks. I went to the doctor yesterday and advised him of my leg situation and my left arm seems to be getting worse.  He still thinks the arm thing is carpal tunnel but advised there is a possibility of neuropathy advising that HIV itself can cause it, he doesn't believe its Atripla because its not one of the drugs that usually would cause that.

In any case he referred me to a Neurologist so they can run further tests, EMG, MRI.  He also thinks some of this can be in my head and part of a panic disorder. Tonight I'm feeling prickly sensations in the bottom of my feet, so I'm really freaking out.  I sort of want to go to the hospital but I don't want to overreact and bother the ER with this.  I feel like i can't concentrate all I've been thinking about is this for the past 4 or 5 days.  He gave me some Xanax to take, but I don't think that will stop my obsessive thoughts

Sorry if I seem to be rambling, but i just needed to put my thoughts down to distract myself from myself.  Doctor told me to relax and not think about it so much if for some reason its neuropathy there isn't nothing you can do about it.  that certainly wasn't a good thought to leave me with.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline WillyWump

  • Member
  • Posts: 7,185
Re: help, Guidance, anything uggggh
« Reply #1 on: November 23, 2011, 09:17:49 PM »
A Googling hypochondriac is never a good thing Mikey ;). Dont try to diagnose yourself with the internet, because all you will do is get yourself worked up over nothing and give yourself more panic attacks.

IMHO I think you just need to relax and take a deep breath. Even if it is Neuropathy you are not going to die or become disabled before your Appt with the Neurologist, so just chill out a bit buddy.

As for the prickly feet, I had these sensations on and off when i was first diagnosed and had occasional generalized foot pain and tingling. But all of this went away after about a year. However I still get flare ups whenever it gets cold, but it is nothing to write home about.

You and the docs will get this all figured out, but in the meantime just relax.

Oh, and Happy Thanksgiving.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #2 on: November 23, 2011, 09:34:03 PM »
Thanks Willy for the response.  My doctor told me similar thing to not diagnose myself before i get diagnosed and to take it one step at a time.  So i'm gonna try and take a deep breath and relax  Thanks again that helped.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline tednlou2

  • Member
  • Posts: 4,906
Re: help, Guidance, anything uggggh
« Reply #3 on: November 23, 2011, 11:32:55 PM »
I hope you've been able to relax some.  I get the tinglies in my hand from time to time and even numbness.  At first, I was like, What is this?  I would also drop drinks right out of my hand.  But, I noticed my neck (specifically the area below the neck in the upper back) hurts a lot, especially when sitting on a hard chair.  So, I'm sure it is some kind of pinched nerve thing going on that affects my hand.  The cervical area affects the hands.  I've had the leg numbness and tinglies from the 3 ruptured lumbar discs.  So, I'd bet it is just something like that and nothing more serious.   

Offline buginme2

  • Member
  • Posts: 2,989
Re: help, Guidance, anything uggggh
« Reply #4 on: November 23, 2011, 11:53:43 PM »
Hey we're Xanax buddies!!!

Try not to obsess Mikey, relax, breath, don't spend your Thanksgiving in some sad ER.   Its not MS.  Stop googling to figure out what it is..thats the worst.   Like 10 years ago I had this weird pain in my side that wrapped around to my crotch.  I googled , pain, crotch, gay man and it turned up some pretty horrible STD.  I called my boyfriend and accused him of cheating on me.  Turned out I had a Kidney stone.   ;D
« Last Edit: November 23, 2011, 11:55:31 PM by buginme2 »

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #5 on: November 24, 2011, 11:24:20 AM »
Thanks all for the comments...  happy thanksgiving to all!
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: help, Guidance, anything uggggh
« Reply #6 on: November 24, 2011, 12:29:23 PM »
Hi micckeyb

sorry to for u. Now just to understand, what is stressing you about this syndrome ?
Yeah, you are hypochondriac. Ok. What else ? Its a new condition for you, and as such treatable for good.

Be strong is all I wishes u

John


Offline weasel

  • Member
  • Posts: 1,681
Re: help, Guidance, anything uggggh
« Reply #7 on: November 24, 2011, 10:55:07 PM »


   Hi Mikey  :)

                The pains are real !  The tingles are real !

                Try doing something to take   your mind off your   body !

               Some of this crap will never go away , or get any worse  !

              If I lay about I feel like a corpse  :o   

               When I get up and do as much as I can I feel   CRAPPIER !

                But it shows me I can do some things and  am NOT Croaking yet  ::)

               Try it ,   Get up and try to just  ignor the pain   and I bet you will feel better

                If not just mentally .

              Happy Thanksgiving

                                                             Weasel
" Live and let Live "

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #8 on: December 03, 2011, 08:32:58 AM »
Hi all,
i've been a mess this past week.   The bottom of my feet are burning and tingly from right in middle of feet to the heel, numbness in my left arm from elbow to hand, horrible panic attacks (mostly from said info), have a sunburn feeling on my skin from the groin to the upper part of the knees.  My upper lip has been going numb along with dry mouth.

This is my birthday weekend and my year anniversary from being diagnosed, i just dont understand why i'm getting these symptoms.  Will they go away, get worse.  My ID doc said he doesn't think that Atripla would be causing Neuropathy.  .  
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #9 on: December 03, 2011, 09:12:40 AM »
Oh and I have an appointment with a Neurologist Monday morning.  I've been looking forward to going for the past week and half, but also little scared, nervous at the same time.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #10 on: December 04, 2011, 02:21:56 AM »
so there is  not one persion that cares enough to give a response to my above questions.   i'm just trying to make clear. Also  do ones that travel to AMG get this type of treatment as well?
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline tednlou2

  • Member
  • Posts: 4,906
Re: help, Guidance, anything uggggh
« Reply #11 on: December 04, 2011, 02:47:42 AM »
so there is  not one persion that cares enough to give a response to my above questions.   i'm just trying to make clear. Also  do ones that travel to AMG get this type of treatment as well?

I'm sorry to hear you're going through all this.  I think many either just don't have the knowledge (like me) or they just didn't know you replied asking for further info.  Or, they just haven't been on here today or just missed it.  Give the people with the experience and knowledge time to respond.  I can only imagine how frustrating what is happening to you is.  I'm sure people with the info will be along to answer.  Or, PM the ones who have already responded with similar issues.

I hope you get this sorted out soon and get relief.  Wishing you the best. 

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,955
Re: help, Guidance, anything uggggh
« Reply #12 on: December 04, 2011, 04:42:07 AM »
so there is  not one persion that cares enough to give a response to my above questions.   i'm just trying to make clear. Also  do ones that travel to AMG get this type of treatment as well?

People have already given suggestions as to what you should do-stay the hell off the interwebz and quit trying to diagnose yourself.  The only entity that should be diagnosing you is a qualified doctor.  Stop doing it yourself, and stop putting the expectation on people here to do it (diagnosing your "illness").  Let us know what the neurologist says.  That's the only advice you need.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Growler

  • Member
  • Posts: 567
Re: help, Guidance, anything uggggh
« Reply #13 on: December 04, 2011, 05:20:32 AM »
Mikey, Sometimes it's hard to reply to a post because we simply don't have an answer that feels adequate. Unfortunately these are often the posts that need our most attention.

But I promise you're never alone.

GROWLER
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #14 on: December 04, 2011, 08:50:14 AM »
i'm sorry guys and gals for the rude comment, its just been a rough past week.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline OneTampa

  • Member
  • Posts: 2,219
  • "Butterflies are free."
Re: help, Guidance, anything uggggh
« Reply #15 on: December 04, 2011, 09:45:48 AM »
Mikey,

I am sorry to hear that you are going through these episodes.  But, you MUST see a qualified medical professional, as previously stated, who is better equipped to help you.

I hope things improve for you.

Take care of yourself.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline buginme2

  • Member
  • Posts: 2,989
Re: help, Guidance, anything uggggh
« Reply #16 on: December 04, 2011, 10:17:50 AM »
Hey Mikey, I'm sorry your having a rough go of things lately.  I hope the neurologist has some answers for you.  If it is neuropathy ask if the medication Gabapentin would help.  A few years ago I injured my back and had nerve pain something fierce.  Before I could have surgery to fix it they gave me Gabapentin and it took away the nerve pain completely.  Now I know the situations are different but if its nerve pain its worth a shot. 

I do hope it gets figured out.  I have been looking out for your post to see if you updated it yet.  Side question for you.  December 10 for me is one year on Atripla, you and I started at pretty much the same time.  How are you doing one year in?   

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #17 on: December 04, 2011, 12:57:26 PM »
hi bugg,
i'm doing pretty well with the Atripla except taking a little more time to reach the UD mark, but we will monitor for the next blood work.  If its not UD then he may want to add a 4 drug to it or switch all together.  looks like you are doing well.

Thank you for saying hi!!!
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: help, Guidance, anything uggggh
« Reply #18 on: December 04, 2011, 01:07:42 PM »
Birthday weekend?  Sorry you are having such a tough time of it.

 Hope you start getting some answers Monday.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #19 on: December 05, 2011, 12:17:42 AM »
BT65,
Thank you for bringing me back to reality, i needed that slap in the face.   For some reason i'm always reminded of that lady in the movie 'airplane' where everyone takes turns at slapping her in the face...
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #20 on: December 05, 2011, 12:24:20 AM »
BT65,
Thank you for bringing me back to reality, i needed that slap in the face.   For some reason i'm always reminded of that lady in the movie 'airplane' where everyone takes turns at slapping her in the face...

http://www.youtube.com/watch?v=SOG2MHPQFqY&feature=player_embedded
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

  • Member
  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #21 on: December 05, 2011, 01:35:30 PM »
Hi all,
Just a followup.  I seen the neurologist this morning and advised of my issues with my left arm and feet.  He did the normal look over and checked reflexes, used vibrating fork? to test for sensations on different parts of my body, arms, hands, feet, ankles everything looked normal on that, reflexes and such.

He doesn't think that i have any issues with the brain or spine, so didn't think an MRI is needed, i don't have any loss of coordination, nothing seemed out of the ordinary in the back of my eyes etc, balance.  I asked him about neuropathy, he isn't ready to make a diagnosis of that.  He asked me about my HIV meds ad CD4/VL etc. He says they don't see a lot of Neuropathy problems with HIV itself unless the CD4's are low and VL is high and/or drug toxicity  he says that if all these below tests come back normal may want to discuss med dosage or possible med switch, but one thing at a time. 

He did a series of blood work,

1. Complete Metabolic Panel (sugar, kidney, liver)
2. Vitamin b12 and Folate,
3  Erythrocyte Sedimentation Rate (inflammatory)
4  THS/F4
4  Arsenic
5  lead

i go back in a week for nerve conduction test and then followup with him on the 19Th.  so i guess its just a wait and see thing.  I just wish i could get this out of my head, i think that is my worst enemy at this point.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: help, Guidance, anything uggggh
« Reply #22 on: December 05, 2011, 01:37:23 PM »
A few years ago, I was having weird feelings and a numb pain in my legs and feet.  I also started having symptoms similar to what you describe regarding your arm, numbness, etc.  Guess what it turned out to be... an office chair with a foam cushion that wasn't supportive enough and bad desk posture.  In other words, I needed a new chair and to sit in it differently.  My chiropractor described my posture - while sitting at my desk and and while driving.  After modifying those things, all was well.  I'm not saying that you are having the same problems, but sometimes, the causes of our issues are so small we totally overlook them.  Until you get test results back, or the symptoms change or intensify dramatically, try to relax.  The stress from your worrying is not helping with your anxiety attacks.  

edited to add:  I posted after your last update.  Try not to dwell on all this.  HIV is worrisome enough without adding a lot of extras to the mix!   ;) Take care.
« Last Edit: December 05, 2011, 01:39:42 PM by David_NC »
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #23 on: December 05, 2011, 02:00:11 PM »
Hi David,
 yeah that was one thing he said as well since this issue didnt start until i began working from home and sitting at a horrible desk and table chair.  I decided to go back in the office last week

Thanks again for the reply. i'm gonna try and relax for sure...

mike

11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #24 on: December 13, 2011, 07:02:18 PM »
Well tomorrow I have my EMG/NCV test with Neurologist.  Anyone had these before?  i've always wanted to try E-stim, but just not on my leg or arm.  I've watched videos on youtube of these tests.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline Miss Philicia

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  • Posts: 24,141
  • celebrity poster, faker & poser
Re: help, Guidance, anything uggggh
« Reply #25 on: December 13, 2011, 07:05:12 PM »
Well tomorrow I have my EMG/NCV test with Neurologist.  Anyone had these before? 

I had one in July. They string you with electrical wires and poke your feet and legs with needles, but none of it hurts at all.
"I’ve slept with enough men to know that I’m not gay"

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #26 on: December 13, 2011, 07:13:41 PM »
Thanks Miss P,
I suppose it will an adventure for sure.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline Miss Philicia

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  • Posts: 24,141
  • celebrity poster, faker & poser
Re: help, Guidance, anything uggggh
« Reply #27 on: December 13, 2011, 07:42:30 PM »
Thanks Miss P,
I suppose it will an adventure for sure.

It's a bit too boring to be an adventure -- really, I think I was in there for 15-20 minutes max (not including waiting room time and paperwork). The voltage they shoot through you is the most it hurts, but that only lasts less than a second each time. It only made me jump twice that I remember.

If it makes you feel better it's more fun than going to the dentist. Absolutely nothing to get amped up about tonight.
"I’ve slept with enough men to know that I’m not gay"

Offline mikeyb39

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Re: help, Guidance, anything uggggh
« Reply #28 on: December 14, 2011, 11:34:59 PM »
just a followup,
i got the EMG/NCV tests done, wasn't too painful, just little irritating i guess.  The doctor said nothing jumped out as looking serious, but will have to review the tests more and give the results to my doctor, still waiting on all the blood work to come back from previous appt.

The EMG doctor was familiar with my HIV status and asked about the medications and viral load, he said they don't see many folks with these types of problem with HIV PN with newly diagnosed and/or folks with low or UD viral loads these days, so he is not completely convinced it has to do with HIV itself or the medication and also suggesting that the pain in my foot/feet could be an injury to the plantar fascia.

So i guess once the results come back from these tests I may end up at a podiatrist at some point.  This seems like a never ending story.  Ever since I've turned 40 i seem to be falling apart at the seams, maybe now that i turned 41 i will start feeling normal again...
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #29 on: December 20, 2011, 09:41:48 PM »
Just another follow-up,

Spoke to the Neuro today they had all my above lab work back, seems like everything is in the normal range, no diabetes or blood toxins etc.  Still waiting on the results of EMG/NCV.  So far they can only code my condition with the symptoms i'm describing, so they have coded it as idiopathic (no cause) PN, still not thinking it has anything to do with HIV itself.  Maybe idiopathic was a nice way of telling me i'm an idiot and imagining things

I have a follow-up with ID doc on 2 Jan once all the results are done,  At that point he will discuss switching meds as a possible ARV toxicity. He advises that the only way to know is to switch the combo and see if the symptoms go away. he may have me see a foot doctor before he does that to rule out any physical issues with my feet since all this started when i come home from the gym a few weeks ago.

I'm trying to take all this in stride, but its mentally exhausting and frustrating.  I wish i could just get this out of my mind and enjoy the holiday season , but it doesn't seem to be working out that way.  Co-workers and family are picking up on my frustrations i've totally withdrawn from everyone.





 
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #30 on: December 27, 2011, 05:26:03 PM »
hi all,
I received preliminary results from the EMG/NCV.  Shows neuropathy in left wrist which which indicates carpal tunnel sydrome.  I sort of knew that, so not much of a shock.  The feet/ leg issue the NCV showed absent tibial H reflex which may indicate S1-radiculopathy (pinched sacral nerve). I have to get the complete results from the neuro on my follow-up visit on the 19th when he returns.  The nurse advised will probably have to have additional test to see if indeed its something in my back.

11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #31 on: January 10, 2012, 04:10:21 PM »
Hi all,

I'm sorry for dragging this up once more.  I'm just at a total loss of what to do really concerning all this.  I went my doctor and he changed my medication from Atripla.  I've been taking the new meds but it seems like the symptoms are getting worse instead of better.  He did say that if it was something in the atripla causing this then the symptoms would probably get worse before they starting getting better and can take several weeks to months, but I don't know.

My feet are not only tingly and numb, but now i am having numbness in my groin lower buttocks region and legs are just sore and have electric shocks when i rub on them.  I have a follow-up with the neuologist concerning the NCV/EMG test on the 19th, but i'm kinda afraid to wait that long.  What if i'm having some type of Guillian baret syndrome or MS or Myelistis. Unfortunately he is unable to get me in any sooner.

I apologize in advance to keep talking about this, but I dont feel i have anyone to talk to.  This has been 'all looming' since it started a month or two ago i've totally withdrawn myself and i dont even feel like getting out of bed to come to work, much less socialize.  I visited my mom this past weekend and she knows that something is up with me, but I have to blow it off like everything is fine.

I consider myself to be a masculine guy, but I find myself literally crying sometimes at night just because I have no answers.  I used to be able to relate to all the folks on here, but I feel like the lone ranger these days  my left arm is intermitten numb from Elbow to hand most of the time.  i don't know any of my poz friends that have or had this issue.

Again i'm just venting I guess, anyone can thru any types of comments at me.  I really think i'm going off the deep end here...
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline newt

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  • Posts: 3,885
  • the one and original newt
Re: help, Guidance, anything uggggh
« Reply #32 on: January 10, 2012, 05:09:13 PM »
If it's localised to one side/limb/affecting a range of areas differently or not truly symmetrical it's very unlikely to be HIV or HIV meds related or indeed something like Guillain–Barré syndrome etc. The symptoms you describe are not at all like onset of MS. Neurology is something of a mystery and tests are not often that acute, and doing lots of tests also necessary.  If it's not a pinched nerve or carpal tunnel syndrome, but a neuropathy of a single nerve or nerve system, then there will have to be more tests. Sorry not to me more helpful.

Getting out rather than staying in will be equally painful or less painful, and do your state of mind a world of good.

- matt
« Last Edit: January 10, 2012, 05:11:12 PM by newt »
"The object is to be a well patient, not a good patient"

Offline LongTimeSurvivor

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  • Posts: 194
  • I don'no...there may be Zombears...in theres...
Re: help, Guidance, anything uggggh
« Reply #33 on: January 10, 2012, 09:22:58 PM »
Well...your hairy chest got me tingly in certain places...

But enough of the silly stuff.

I take Atripla. Never had the systems you're describing. What I've had is a very localized burning/skin-being-scraped-off sensation on one side of my right leg when a certain type of pressure is applied. I also have had some numbness, mainly in the morning, in my hands.

Some of the leg stuff sounds like what my best friend had to deal with. His turned out to be related to compressed discs in his lower back and a nerve that ran through his hip to his right leg...not AIDS. He had to walk very slow or he would fall. The only way it was "cured" was an operation to stabilize his lower back with steel bars. Still has some pain but can go back to the gym now.

Take the Xanax. Take anything that will relax you...except maybe bourbon and Xanax. I can relate to the obsessive thoughts. Had twenty years of that from losing my first partner to AIDS related issues. Not a day went by that I didn't spend hours thinking about him. Actually living a "life" with him in my mind. Do whatever  you can to break that cycle. All it does is drag you down further and further.

Not sure if this is helpful but I'm always around to listen to people vent...seems to be one of the few virtues I possess...
« Last Edit: January 11, 2012, 07:27:23 AM by LongTimeSurvivor »
Of course it's important. It's an email...

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #34 on: January 10, 2012, 10:12:00 PM »

@NEWT.  thank you for the reply!

@LongTermSurvivor

Hehe, Nice pic yourself!  Thank you for the reply, Nice to hear your story and kind words.  I hope to get back to the gym at some point, i do miss glaring at all the hotties.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline tealeaf

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  • Posts: 38
Re: help, Guidance, anything uggggh
« Reply #35 on: January 10, 2012, 10:33:46 PM »
Hi Mikey,

I too had the same symtom of numbness and tingling from elbow to my right fingers. It turned out to be Repetitive Strain Injury from using laptop and mouse too much on that hand. Specifically, it's from having bad back posture and typing with my wrist in a bad angle. Truck drivers are also prone to this kind of injuries.  I'm not sure if this applies to your situation? I got this years before my HIV+ and got it sorted out by chiropractor, gym (lower back and arm exercises) and lots of stretching. This particular book nailed the diagnosis for me and it has a lot of great stretching techniques you can follow http://www.amazon.com/Its-Carpal-Tunnel-Syndrome-Professionals/dp/0965510999/ref=sr_1_sc_1?ie=UTF8&qid=1326252373&sr=8-1-spell

I hope that helps.
« Last Edit: January 10, 2012, 11:53:16 PM by tealeaf »
12/05/2011 - tested positive
12/14/2011 - CD4 376 (18%) - VL 45734
12/28/2011 - CD4 367 (17%) - VL 27000
01/05/2012 - started Complera
02/08/2012 - CD4 521 (31%) - VL 226
04/05/2012 - CD4 453 (22%) - VL 44

Offline buginme2

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Re: help, Guidance, anything uggggh
« Reply #36 on: January 11, 2012, 11:50:28 AM »
Hey Mikey,

I'm sorry your having a rough go of things lately.  I wish I had some practical advice for you, but I don't.  Try not to get too frustrated (although its frustrating trying to get a straight answer from doctors isnt it?)


Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #37 on: January 15, 2012, 10:03:55 AM »
Well guys and gals i'm trying not to jinx myself, but my feet have been getting better in the last few days.  The electric shocks in my feet and ankles have subsided quite a bit and the burning tingling has subsided some as well.

I still have a little numbness going on in my left foot mostly and it tingles from time to time, but maybe thats a sign the nerves are waking up.  I was actually able to slide on my boots this weekend and go have a drink with a friend.

The new medication combo has been working great, not really much side-effects at all.  I still have a follow-up with neurologist this week, so maybe will be able to give some good news, i really don't want to go on any Neurontin or depression medication

11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline ratcat

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  • Posts: 61
Re: help, Guidance, anything uggggh
« Reply #38 on: January 16, 2012, 01:36:32 PM »
It sounds like back problems to me dude...probably a bulging L5S1, like I had a few years ago, before the HIV.  I was eating ibuprofen like it was m and m's...lol  An inversion table sorted me out.  I hung upside down for 10 minutes at a time, twice a day.  I have had all of these symptoms, and had the arm thing going on this past summer.  It went away about a month after I stopped riding the motorcycle with sidecar combo!  That thing pulled to the left. ;)

Oh, and I wouldn't go to a Chiropractor if I was you.  Those dudes will just make it worse if you have a bulging disc and sciatica!  They are quacks anyways.

What caused my problems-
1.driving a taxi
2.too much time on the computer
3.motorbike with sidecar...lol
4.using a floor mounted, up and down motion air pump, manually operated

It wasn't from the extreme sports...those made me feel better. 
« Last Edit: January 16, 2012, 01:44:05 PM by ratcat »

Offline mikeyb39

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  • Posts: 933
Re: help, Guidance, anything uggggh
« Reply #39 on: January 20, 2012, 10:17:24 PM »
Hi all,
I had a weird experience with my Neurologist today, I went and got all these lab test and EMG/NCV at the beginning of December, never got a call back for results, I ended up having to call the nurse which gave me the preliminary results and said the doctor would go over in more detail on my next appointment, that was supposed to be for today,

I got a call from the doctor about 2 hours before i was due to arrive and he basically said that I didn't need to come in and that he was going to cancel my appointment. He said that reviewing my lab work there wasn't anything he could do for me advising that my labs gave no reason for any type of neuropathy and if anything was causing my feet problem then it was the medication or some type of accute viral infection of some sort.

He didn't ask if I was still having any issues and just said I will send your results to your doctor and he can follow-up. 

I just found the call to be somewhat insensitive, especially since he could have done this 3 weeks ago instead of having me wait to the last minute to call and cancel my appointment.  Not to mention the fact that my ID doctor wanted to see what his diagnosis and recommendations. 

My feet are getting a little better since I switched medications and my left arm doesn't have the buzzing/tingling as much as it was previously, so hopefully getting better, but the bottom of my feet still feel like i'm walking on bone when wearing my shoes during the day.  I was at least hoping to get some type of guidance, otherwise I feel like i've wasted time going back and forth for these tests.



11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline LongTimeSurvivor

  • Member
  • Posts: 194
  • I don'no...there may be Zombears...in theres...
Re: help, Guidance, anything uggggh
« Reply #40 on: January 21, 2012, 08:11:50 AM »
Sounds like a case of "God Complex." (Not to mention just plain rude) Seems to be particularly rampant in specialists who sort of have a lock on the services they provide.

Personally I'd write to complain to the appropriate medical society and any state agency about his poor service. Also complain to your insurance company if he's one of their required docs. I doubt your doctor will scold him (professionally courtesy thingy), even though your doc might follow through and make him give a diagnosis of some sort.

Basically you're left with telling all your friends to avoid this specialist. Go online and see if he's listed in one of the doc rating sites and let him have it. It might not change anything but you'll probably enjoy eviscerating him.

Hope your symptoms continue to abate. Pain is no fun.
Of course it's important. It's an email...

 


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