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Author Topic: Peripheral neuropathy.....and life!!!!!!!!  (Read 3180 times)

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Offline britchick

  • Member
  • Posts: 445
Peripheral neuropathy.....and life!!!!!!!!
« on: May 25, 2013, 12:42:48 PM »
Hi!

Just another wee question !Has anyone gone through tests re peripheral neuropathy?My Consultant is sending me up to the city re this as soon as  i can get an appointment.

On a happier note.....I finally got back bronchoscopy findings..from March!It was only Influenza B....had it for 6 weeks or so which was unusual ...and its gone now....Yipee!!!!!!! just waiting for my May Cd 4 count which was taken on Wednesday.

 Oh and im on a 2 week staycation so its lovely to be at home.Its even sunny today in Scotland!!!!!!Lol!!!!!!!!!


Britchickx

Offline Jeff G

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  • Member
  • Posts: 13,253
  • How am I doing Beren ?
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #1 on: May 25, 2013, 01:46:52 PM »
Hi Britchick , if the test you are referring to for PN is a nerve conduction study then I have had one before . Others may disagree but I have had that test 2 times and while it was mildly uncomfortable I really didn't see what the big deal was , Ive had far worse done to me .

I can understand why doctors do that test but I sometime feel if they have ruled other conditions out then why bother putting a person through the inconvenience and anxiety of having nerve conduction study's done , PN is pretty easy to identify by symptoms and having underlying condition's that make it more than likely that PN is the issue .   

If you need a diagnoses for insurance or assistance in treating it that's another factor as well . Good luck and let us know how it works out  . 

Offline Miss Philicia

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  • Posts: 24,520
  • celebrity poster, faker & poser
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #2 on: May 25, 2013, 02:41:07 PM »
I just had a second neurological/nerve conduction test yesterday. I don't find anything anxiety provoking about having them done myself.
"Iíve slept with enough men to know that Iím not gay"

Offline J.R.E.

  • Member
  • Posts: 7,282
  • Joined Dec-2003 Living positive, since 1985.
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #3 on: May 25, 2013, 02:52:02 PM »
Hello Brit,

I also had the nerve conduction tests done, back in 2004. once they wire you up the tests lasted ( I believe) about 15-20 minutes, perhaps less. I was laying in my back for the tests.

It was really painless !!

Good luck--Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 12/10/14,  t-cells are at 350,  Previous 8/25/14--- 402/ Viral load remains <40

 Current % is at 13% / Previous 8/25/14 11%

  
 63 years young.

Offline britchick

  • Member
  • Posts: 445
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #4 on: May 25, 2013, 03:21:17 PM »
Thanks everyone for your quick replies and sharing your experiences.I had no idea what to expect so cheers for the info.

Do any of you feel like you just solve one wee niggle and along comes another one?!!!
Anyway....onwards and upwards!!
Thanks
Britchickx

Offline Miss Philicia

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  • Posts: 24,520
  • celebrity poster, faker & poser
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #5 on: May 25, 2013, 03:24:59 PM »

Do any of you feel like you just solve one wee niggle and along comes another one?!!!


Mine keep coming and only about half seem to get "solved'.
"Iíve slept with enough men to know that Iím not gay"

Offline tednlou2

  • Member
  • Posts: 5,085
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #6 on: May 26, 2013, 01:44:25 AM »
I recently had the nerve conduction.  I get the tinglings in my hands and feet occasionally.  Mine is no doubt from back issues-- lumbar and cervical.  I don't have the pain, like many do with PN-- just the tingles.  I was a tad anxious, because I didn't know what to expect.  I had a handsome guy doing mine, so I kinda enjoyed him touching me. 

It was a tad uncomfortable, but no big deal.  It hurt a little, when he turned up the juice.  I remember he turned on the sound, so I could hear either the nerves or my muscles.  I forget.  It sounded like static to me.  I just kept thinking it seemed odd to insert the same probe in various places.  I would have thought they'd use a sterile probe for each insertion. 

Offline britchick

  • Member
  • Posts: 445
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #7 on: May 26, 2013, 11:16:39 AM »
Thanks again for your replies.Im okay about going.I remember pre Aids diagnosis....for approx a year falling over and lots of pain in feet, back  and knees, also top of shoulders and having tests then.....verdict Fybromyalgia .....then nothing for a while...then PN  hit......!!!!!!

I really value all your replies because I feel like im still learning and am never sure whats next.

Cheers

Britchick.

PS no tingling in hands.....Pre diagnosis I kept dropping cups etc...but nothing like that now..see thats a bonus!!!!!Lol!


Offline Disturbed

  • Member
  • Posts: 22
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #8 on: June 04, 2013, 12:08:15 PM »
Yes, I had 2 nerve conduction studies, it's not a problem, only a little unconfortable.
The results where quite bad and I start treatment already for CIDP (prednisone) and next week I have a lumbar puncture to see if I really have CIDP. Probably yes because I have all the symptoms of that, but not too much severe. Will see how it goes.
Jan'12 Diagnosed HIV+ CD4 26 VL 3.400.000
Dec'12 Diagnosed visceral leishmaniasis CD4 60 VL 560
May'13 Diagnosed CIDP CD4 180 VL UD
May'14 CD4 330 VL UD

Offline synergyhomepage

  • Member
  • Posts: 19
  • Live like there is no tommarow
    • Valley Aids Information Network
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #9 on: June 12, 2013, 02:23:14 PM »


I have been suffering PN for 8 years.   Never had tests done for that.  I asked for a referal for a neurologist that speciallized in AIDS?HIV  and found a wounderful dr.  She put me on Lyrica, and gabapentin.  Makes a world fo difference,  I only use a can in the afternoon when im really tired.  I also have aids related dimentia and require the cane for balance.  I can acually get things done in the morning when im fresh, and rested.  Find the right doc and you will find some relief.  Damage done is permenant, but there is some relief avail.  Lyrica was my savior.

Dave

Offline britchick

  • Member
  • Posts: 445
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #10 on: September 08, 2013, 01:53:55 PM »
Couldn't find this topic...I remembered I must have posted around May re Peripheral Neuropathy.

Yippee....Im going to  the Neurologist  up in the city tomorrow .....14 weeks after posting!Lol!Will post re tests etc, hoping  it will explain whats going on.

Im full of "fluey "symptoms again!!!!!!!!Have been relaxing at home(staycationing again!)

Might be able to "manage " a wee refreshment on the way home tomorrow as have been stuck drinking tea all weekend!Lol!

britchickx

Offline anniebc

  • Member
  • Posts: 5,956
  • AM member since 2003
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #11 on: September 08, 2013, 05:03:37 PM »
Hi!



On a happier note.....I finally got back bronchoscopy findings..from March!It was only Influenza B....had it for 6 weeks or so which was unusual ...and its gone now....Yipee!!!!!!! just waiting for my May Cd 4 count which was taken on Wednesday.

Oh and im on a 2 week staycation so its lovely to be at home.Its even sunny today in Scotland!!!!!!Lol!!!!!!!!!


Britchickx

Hi Brit

I glad to hear that things are looking up for you, keep up the good work.

Now! you may be able to fool they guys here but I was born in Scotland, (still a Jockess at heart) and I know the sun doesn't shine in Scotland, but if or when it does, it's minutes not hours at a time.  ;)

Aroha
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline mikeyb39

  • Member
  • Posts: 948
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #12 on: September 08, 2013, 06:00:05 PM »
hi britt,
I think I've had all the tests done for PN.  nerve conduction, had things stuck to my head to test my brain.  MRI's.  was a lot of test to find out I had some small nerve damage.  My Hiv doctor told me that before I even had the tests.

Thankfully a change in medication made it almost back to normal.  Atripla was eating the nerves in my feet and hands.
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

  • Member
  • Posts: 24,520
  • celebrity poster, faker & poser
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #13 on: September 08, 2013, 06:05:40 PM »
I was up until 5am because of nerve pain. I greatly enjoy my life at the moment.
"Iíve slept with enough men to know that Iím not gay"

Offline mikeyb39

  • Member
  • Posts: 948
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #14 on: September 08, 2013, 06:14:56 PM »
Sorry to hear that Miss P, that's not a fun thing to deal with.  When mine was at its worse, I couldn't sleep, couldn't hardly walk or wear a pair of shoes.  uggggh
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 britchick

  • Member
  • Posts: 445
Re: Peripheral neuropathy.....and life!!!!!!!!
« Reply #15 on: September 09, 2013, 09:55:43 AM »
Cheers for your replies.

anniebc(Jan)......the sun isn't shining today!Lol!We had a good summer...the first in yrs here.....thats it over for another 20 yrs!!!!!!!!!What part of Scotland were you born in?

MissP,  i hear you on the being awake through the night thing ...its still driving me mad too.Im now at the stage where I have to lie down in the afternoon cos im sooooooo tired! Nerve pain always seems worse at night too.also early morning or when walking

mikeyb39....I cant wear my skyscraper heels anymore  after  20 plus years of wearing them as  I keep falling over and look drunk when im not!


I went to Glasgow today to the Neurology dept at Southern General!Like a military operation to get there! Left at 7 am...home at 1 pm.Bus,  overground train, underground train ,another bus there and same back!

Poured myself a wee glass of wine and got into my pj's when i got home!!!!!!!!!!!Tired!!!!!Results soon...all they could tell me today is that there is some damage,(but only to small nerves).

Will let you know re follow up.Tests aren't painful , just a wee bit tingly.

britchickx



 


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