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Author Topic: myelitis anyone  (Read 166 times)

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Offline zach

  • Member
  • Posts: 709
myelitis anyone
« on: April 14, 2014, 10:17:12 AM »
on a certain level this is just me freaking out, and some cracks showing in my brave face (cheaply painted on, don't let me fool ya)

has anyone here ever experienced myelitis? and more specifically, recovered from it?

it is pretty alarming how quickly this went from a mild numbness a few weeks before hospital, to now seriously affecting my ability to walk. doctors hope that as i recover, the lesions on my spine causing this condition will also heal. i try to remain optimistic, mostly because i deeply believe that positive thoughts are healing

i think i just need to hear that someone has gone through this, and come out the other side.
3/27/14 vl >300k cd4=9... plenty of room to improve

I set into a downward spiral
Caught an illness that was fucking viral
I heard some words of wisdom the other day
And they went in one ear and out the other one

With all the vapors that the vile humans brew
Shining through.. the blight of you
Shining

Online Jeff G

  • Global Moderator
  • Member
  • Posts: 9,198
  • How am I doing Beren ?
Re: myelitis anyone
« Reply #1 on: April 14, 2014, 10:28:56 AM »
Check this out . I had it bookmarked because I have a condition that mimics TM and have researched it before . Hopkins is a source you might find helpful for other conditions related to the complications we suffer due to HIV, they provide very accurate information . 

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/transverse_myelitis/about-tm/index.html

Offline zach

  • Member
  • Posts: 709
Re: myelitis anyone
« Reply #2 on: April 14, 2014, 05:11:10 PM »
thanks jeff... as scary as alot of what i'm learning about it is, there is still much to be optimistic about. i may walk hobbled for awhile, but all research seems to indicate that it will improve and thats reassuring at least
3/27/14 vl >300k cd4=9... plenty of room to improve

I set into a downward spiral
Caught an illness that was fucking viral
I heard some words of wisdom the other day
And they went in one ear and out the other one

With all the vapors that the vile humans brew
Shining through.. the blight of you
Shining

Online Jeff G

  • Global Moderator
  • Member
  • Posts: 9,198
  • How am I doing Beren ?
Re: myelitis anyone
« Reply #3 on: April 14, 2014, 05:25:44 PM »
With your good attitude you will do very well living with HIV . It takes the ability to be honest with yourself to be successful at living with HIV and that means doing the work on what you can change and gracefully accepting what you can not, and I know you have what it takes .

One of the hardest things people have trouble wrapping their mind around about living with HIV is that it changes your life in such a way as that taking care of your health is job number one and once you get that taken care of you have a solid base to go on from there .

My years poz has taught me that the complications we face like nerve damage do not have a prognosis that is set in stone ... which means if a doctor or your body is telling right you might hobble the rest of your life you could be running next month and surprise them all including yourself  .   

Offline mikeyb39

  • Member
  • Posts: 876
Re: myelitis anyone
« Reply #4 on: April 14, 2014, 06:02:18 PM »
Yes Jeff is right, a lot of these neurological problems doctors don't or can't do much about them.  When I was having numbness in my feet, hand, arms. Burning like hell at times. No one ever wanted to say the N word (neuropathy), yet they put me thru numerous expensive tests and still come up with only a plausible diagnosis which was small nerve fibre , probably due to sustiva

Luckily changing meds helped out a lot. It's really a bummer to hear a doctor say there isn't much they can do with neuropathic issues except throwing a ton of pain pills your way
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

Offline zach

  • Member
  • Posts: 709
Re: myelitis anyone
« Reply #5 on: April 14, 2014, 06:18:12 PM »
i wouldnt have turned down the pain pills  :D
3/27/14 vl >300k cd4=9... plenty of room to improve

I set into a downward spiral
Caught an illness that was fucking viral
I heard some words of wisdom the other day
And they went in one ear and out the other one

With all the vapors that the vile humans brew
Shining through.. the blight of you
Shining

Offline zach

  • Member
  • Posts: 709
Re: myelitis anyone
« Reply #6 on: April 14, 2014, 07:06:08 PM »
i'm always pretty hesitant to ask for pain or sleeping meds... i don't like being treated like the drug addict i was. i know thats a thing i should get over, but it is what it is. i don't drug seek. its not really pain, and maybe it was a mistake to say that to the Dr's. its a numb, buzzy feeling
3/27/14 vl >300k cd4=9... plenty of room to improve

I set into a downward spiral
Caught an illness that was fucking viral
I heard some words of wisdom the other day
And they went in one ear and out the other one

With all the vapors that the vile humans brew
Shining through.. the blight of you
Shining

 


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