Main Forums > Living With HIV

neuropathy and meds

<< < (2/2)

Miss Philicia:
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.

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. 


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



[0] Message Index

[*] Previous page

Go to full version