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Author Topic: neuropathy and meds  (Read 2185 times)

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Offline wolfter

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  • Posts: 5,470
neuropathy and meds
« on: December 06, 2012, 10:45:47 PM »
I hope you all can bear a few questions about neuropathy and my foot injury.  My PT today is still concerned about the spams that start when he tries to manipulate my foot.  Just slightly touching my foot in certain areas can cause uncontrolled movements.

He mentioned the possibility of neuropathy and when I told him that my HIV meds have a possibility of causing that condition, he decided to discuss this with the doctor before continuing any additional therapy.  I hadn't mentioned to him about being positive because I assumed it was all in the file. 

All 3 of my meds have the possibility of causing this.  This got my ever processing brain to think back to some of the things I've commented on before.  This same leg is the one that was starting to fail me.  I referred to it as jelly leg as I'd loose all sensation.  I fell a couple of different of times because of it.  It had the same affect of when your foot goes "to sleep", but without any feeling what so ever.

Can this condition hamper the recovery?  I googled it all, but am confused...(surprise).  How exactly can they verify if that's what's happening?  I'm ready to have my ID doctor consult with this surgeon as something just isn't right. 

This whole situation is starting to take a mental toll on me.  I'm going to end up an angry SOB if this doesn't get sorted out soon.  I've spent too much of my life laying around sick and am so ready to get back to daily life.

Thanks all
Being honest is not wronging others, continuing the dishonesty is.

Offline pozniceguy

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  • Niceguy Dallas
Re: neuropathy and meds
« Reply #1 on: December 07, 2012, 12:15:27 AM »
Greg,  when I  was  first  aware of this problem my Dr  had a Neurologist  run a series of  test  to  determine  exactly  what the issue was.... test  confirmed  the  damage to  certain nerves in the  lower  leg an feet... the  Tech  at the  Rehab was aware of  similar cases and he used  a combination of massage and physical adjustments  to  the  way I  walked and showed me the  way to minimize the issues  when sleeping  (  would get up from bed and stumble  for a few steps)....
hope  you get some relief  soon

remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline newt

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  • the one and original newt
Re: neuropathy and meds
« Reply #2 on: December 07, 2012, 04:21:51 AM »
This doesn't sound like typical meds related PN. If the numbness or pain is symmetrical in your feet/legs it is more likely to be a side effect of the meds rather than the HIV itself or another cause.

- matt
"The object is to be a well patient, not a good patient"

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: neuropathy and meds
« Reply #3 on: December 07, 2012, 09:44:15 AM »
It sounds more like nerve damage from your accident and/or from surgery. I thought, wolfie, that you had previously stated that you had nerve damage.
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

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  • Posts: 5,470
Re: neuropathy and meds
« Reply #4 on: December 07, 2012, 11:09:04 AM »
It sounds more like nerve damage from your accident and/or from surgery. I thought, wolfie, that you had previously stated that you had nerve damage.

That was one of the things thrown out there, but I'm not getting answers.  After yesterday's PT appt, I'm left today with such severe pain that I can't even touch my foot which is again swollen and beet red.  I've not had to take any pain medication for quite a while now but am on the verge of calling and begging.

The therapist indicates he's never dealt with type of situation in all the years he's been doing this.  Of course with him being worried, I'm obviously concerned. 

I'm just loosing patience that my complaints are not being addressed.  Once again, I know there's something else going on but the doctor isn't the least bit concerned.
Being honest is not wronging others, continuing the dishonesty is.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: neuropathy and meds
« Reply #5 on: December 07, 2012, 11:40:46 AM »
The physical therapist need to speak with the doctor, IMO. Maybe it's too early for PT or something else is going on. Though the beginning of any PT isn't what I'd call comfy, and I'm not physically present with you, I'd agree that you shouldn't be having over the top spasms.

My last PT stuff after my 2nd appointment I swelled up so much I had to cancel the 3rd and go back to my doctor. I know it's not the same thing but that one week made some difference.

That said, I also have nerve damage from both pre- and post- surgery issues. It's taking a long LONG time for it to repair itself.
"Iíve slept with enough men to know that Iím not gay"

Offline mikeyb39

  • Member
  • Posts: 980
Re: neuropathy and meds
« Reply #6 on: December 08, 2012, 09:10:16 AM »
Hi Wolfie,
What you describe i've been having similar issues.  I get those spasms in my ankle an calves.  My diagnosis is small fibre neuropathy in my feet, my neurologist is not sure if the spasms are connected with the neuropathy issue, but possibly,  i started with intermitten numbness in both feet and has gotten progressively worse  i have good days and no-so good days. The hope is that it will level out at some point.

I've gone thru all the tests that can be run just about.  EMG, MRI (brain and spine), CT, EEG, tons of blood work from ruling out any deficiencies etc.  My EMG showed some ridiculopathy, but nothing major.  Neurologist says that EMG most of the time can only pick up large fibre neuopathies, not the small fibre, which i have been diagnosed with.

As far as HIV medicine, my neurologist thinks that is what caused the problem, even-though i haven't been on any of the so-called toxic ones. 

My issue is 24/7, so i can understand what you mean about being frustrated with no answers etc.

hopefully what you are going thru is something completely different and will get resolved soon. 
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
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline eric48

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  • Member
  • Posts: 1,361
Re: neuropathy and meds
« Reply #7 on: December 08, 2012, 05:35:01 PM »

the issue I was having was a bit different: I had nerve pain along the legs. Could not sleep.

I went to a first neurologist who disgnosed mild neuropathy;( Electro thing tests)

This gave me immediate access to our city/country most renowned neurologist for HIV

he did 2 things:
- have me re-explored by a neurophysist he truts more: the result came back negative
- put me on vitamin B12 . no prescription is required, BTW, it is low cost, and you do not have to inject, drinking the content is enough. This despite the fact that my blood reading of B12 was within range

I drank the bottle content twice a week for 3 months.
It worked wonders on me.

I was so elated with the results that I went unannounced, without appointment to the neurologist office, just to tell him and thank him so much

Here is what he told me:
B12 is an 'lost' trick that no young doctor will know about.
It works on a limited number of patients, but, when it works, it really works.

Since this does not require a prescription, his recommendation was to take some when I 'feel' I should since this is a 'cumulative' vitamin and you do not want excess build up

Worked on me.

Hope this may help

NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly


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