Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 18, 2014, 08:02:17 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 649721
  • Total Topics: 49588
  • Online Today: 213
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Neurologist follow-up  (Read 2302 times)

0 Members and 1 Guest are viewing this topic.

Offline mikeyb39

  • Member
  • Posts: 948
Neurologist follow-up
« on: October 20, 2012, 09:32:13 AM »
Well all,
I had been having feet problems for a while, burning and tingling, then i started having numbness in my face and groin/leg area.  The Neurologist did many tests Cat scan, MRI of the C-spine, brain, blood work.  All these tests come back mostly normal.  the brain MRI showed some 'FLAIRS' in the white matter of my brain which he advises can be due to higher cholesterol possibly due to the HIV medications or blood pressure.  i also have a small Lipoma in the right ventricle of my brain that he wants to keep an eye on in a year to two to make sure it doesn't grow, otherwise it was good.

With the EMG results and blood work, he has to agree that my feet problems is small fiber nerve damage more than likely caused by the Atripla.  He gave me some Neurontin 600mg tablets and is having me break them in half 3 times a day for now and can increase if i need.

He says the facial and groin numbness is more than likely my anxiety causing that because it has sort of gone away quite a bit now.

He is going to do one more test on me, an EEG or brain wave test to make sure that my facial numbness etc isn't any small seisures happening, he doesn't believe so but wants to rule everything out, i appreciate that.  my last neurologist just blew everything off and sent me on my way

I like this new Neurologist, now i have a gay HIV doctor and a Gay Neurologist.

Oh he also wants to do a sleep study since i dont sleep very well.  he knows i take ambien most every night and he just looked at me and said 'you know thats not a good way to sleep, so may do that someday soon, but i'm iffy on those sleep study things.  plus i'm tired of test and hospitals for a while.

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

  • Member
  • Posts: 948
Re: Neurologist follow-up
« Reply #1 on: October 20, 2012, 09:44:33 AM »
Also i had that EMG about a year ago, it didn't show i had neuropathy, but he advises that an EMG will not determine small fibre neuropathy, it just isnt available to determine that.  He said we could do a nerve biopsy, but doesn't feel that its necessary since he is confident that what i'm dealing withh is small fibre damage.

he also advised me to continue taking vitamin B supplements and also alpha lipoiic acid just as a general nutrient for the nerves.
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 Jeff G

  • Administrator
  • Member
  • Posts: 13,178
  • How am I doing Beren ?
Re: Neurologist follow-up
« Reply #2 on: October 20, 2012, 09:52:56 AM »
I have been diagnosed with small fibre neuropathy for about 4 years now , however it took me about 15 years to get that diagnosis . Its a little understood condition and very frustrating to deal with , mine is advanced and I now must take pain medication to deal with it .

Offline mikeyb39

  • Member
  • Posts: 948
Re: Neurologist follow-up
« Reply #3 on: October 20, 2012, 09:57:24 AM »
Hi jg,
Yeah i take pain medicatiion as well, mine mostly bothers me when i'm sitting at work or sitting in a car.  usually walking doesn't bother me too much.  i changed medications about a year ago, so i'm hoping it doesn't get any worse.   ugggg
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: 948
Re: Neurologist follow-up
« Reply #4 on: October 20, 2012, 10:03:23 AM »
Its such a slap in the gut for me to be honest.  Noone i know that has HIV seem to have this problem, i feel like the lone ranger on this, especially have only been positive for two years.
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 Jeff G

  • Administrator
  • Member
  • Posts: 13,178
  • How am I doing Beren ?
Re: Neurologist follow-up
« Reply #5 on: October 20, 2012, 10:14:53 AM »
It gets worse at night for me , it may be in my arms and legs or I may have moderate to severe chest pain . Before the diagnosis I would sometime sit and wonder should I go to the emergency room but I knew all I would get for my effort was a huge copay .

I get weird sensations that feels like cool water being poured over me ... but the worst is always at bedtime where I know I'm going to have severe pain or that nagging restless leg feeling that is a whole body sensation making it impossible to settle in one place to rest . I'm stable now and take two pills a day , it takes all the pain and odd sensations away .

I also felt like I was the only one with this condition . I'm thankful to know what the cause is and how to treat it so I don't have to spend so much energy wondering why .   

Offline mikeyb39

  • Member
  • Posts: 948
Re: Neurologist follow-up
« Reply #6 on: October 20, 2012, 10:20:39 AM »
I agree,  all i wanted was a diagnosis so i could at least do something about it.  it takes forever to get that diagnosis with the back and forth from my ID doc and neurologist and tests...its a pain in the ass.

i take ambien to help me fall asleep, i dont know what i'd do without it to be honest, i know its not good to take for long term sleep, but I told my doctor this is just the way it has to be and now he doesn't argue with me when i want refills, he just gives me 6month refills at a 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 buginme2

  • Member
  • Posts: 3,274
Re: Neurologist follow-up
« Reply #7 on: October 20, 2012, 10:33:36 AM »



 plus i'm tired of test and hospitals for a while.



I know you have been dealing with this for awhile.  Glad to hear that you are starting to get some answers.  Sounds like your neurologist is pretty on top of things. 

Hospitals do get old pretty quickly dont they?  I feel ya there
Don't be fancy, just get dancey

Offline mikeyb39

  • Member
  • Posts: 948
Re: Neurologist follow-up
« Reply #8 on: October 21, 2012, 11:48:15 AM »
I've been taking this gabapentin for a couple days now and it seems to be working pretty well, my feet seem more manageable when i'm driving or sitting at work.  the neurologist prescribed me 600mg tablets and has me breaking them in half 3 times a day.  they  havent really made me sleepy, but last night i was able to attend a friends house warming party and my feet didnt bother me as much as they would have before.
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 BT65

  • Global Moderator
  • Member
  • Posts: 10,081
Re: Neurologist follow-up
« Reply #9 on: October 23, 2012, 03:06:26 PM »
I've got neuropathy, have had it for years.  I had to give up a little red Nissan sports car because my left foot couldn't feel the clutch.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Buckmark

  • Member
  • Posts: 1,573
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: Neurologist follow-up
« Reply #10 on: October 24, 2012, 01:04:58 AM »
I've got neuropathy, have had it for years.  I had to give up a little red Nissan sports car because my left foot couldn't feel the clutch.

I can easily imagine you driving around in a little red sports car, wearing a little black dress.  :-*  I'm sorry you had to give it up.

I'll repeat here, for both BT and mikeyb and anyone else who has had neuropathy, that they might want to try taking acetyl l-carnitine (it's an nutritional supplement / amino acid).  I know several pozzies with neuropathy who swear by it, as it rescued them from living hell.  Same for a friend I know who has diabetic neuropathy.  It's certainly not a guarantee, but then again, what is?  Google it, and you'll find tons of articles.  Here is one you may want to start with: http://www.ncbi.nlm.nih.gov/pubmed/17696590

If you decide to try it, make sure you purchase acetyl l-carnitine, and not simply l-carnitime. 
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline mikeyb39

  • Member
  • Posts: 948
Re: Neurologist follow-up
« Reply #11 on: November 09, 2012, 01:35:26 AM »
hi all,
just a little follow-up on my neuro issues.  i had been not only suffering issues with my feet, but also numbness in my face and arms etc.  My neurolgist did tons of tests CT scan, MRi of brain and C spine, EEG.  No signs of a stroke or infarct, no specific lesions that would indicate any MS type issue etc.

 my neurologist is certain the cause of the facial numbness and arms is due to my migraines, which have been getting worse in the past 6 months.  My anxiety also plays a big role in this as well

The feet issue, even-though Neuropathy didn't show up on the EMG, he believes i have small fibre nerve damage most likely due to something that was in the Atripla i was taking.  He suspects that it will eventually level off and probably not get any worse if keep the virus under control, but more than likely will never be back to 'normal' again.   He started me on some neurontin to help with the feet issues and we will go from there.

least i'm finally starting to get some answers.
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 BT65

  • Global Moderator
  • Member
  • Posts: 10,081
Re: Neurologist follow-up
« Reply #12 on: November 09, 2012, 05:08:34 AM »
I can easily imagine you driving around in a little red sports car, wearing a little black dress.  :-* 

That's cute.  I haven't worn a dress in years, and don't own one.  I guess that's because it wouldn't look good with a knee brace. 

I take Lyrica for the neuropathy and it works as well as anything else.  Of course the years of uncontrolled diabetes just exacerbated the issue.  But I've had it since, like the middle 90's I believe.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.