saw a neurologist some disheartening news

[poztraveler2014]

As some have seen on this forum, since i started HIV treatment i've had a whole host of issues that havent been resolved and that have been brushed off by my doctor. Today i saw a neurologist who finally gave me some explanation for whats going on but it also worried me. Given all the symptoms ive had involving muscle aches, pain, some tremors and what not he thinking i might be starting a process of my myelin wearing down.
 Which means i might have ALS or MS type symptoms as part of my HIV process. Sadly that explains a lot. Ive been looking online and many of the symptoms seem to be what im experiencing. He sent for an MRI of the brain and spine, getting that done will be a pain but it should be possible.
I'm worried that even though im on ARVs im gonna get really ill. Already i feel so tired achy and often feel confused and what not. What if i do lose all of my body functions and have to be put on respiratory. The worst part is not knowing if its gonna get worse or not.
For now the only thing he sent was lyrica to help with the muscle tightness and what not.
Its just so scary to feel like im the only one in Ecuador having to deal with this by myself with a healthcare system that only half works half of the time.

[Richie_R2]

I don't mean anything negative or judgemental by asking, but were you checked for tertiary syphilis? It's not unheard of for low-level syphilis to go unnoticed (as in, few-to-no visible sores, etc) in HIV patients until it emerges as neurological problems down the road. There are also numerous other parasites in the Panama region to which immune-compromised persons are highly susceptible. I would make sure to rule those out before you start being concerned about myelin degradation... yes, you saw a neurologist, but he only said that "given the symptoms it seems like...".

Have you ever heard the phrase, "When the only tool you have is a hammer, pretty soon everything starts to look like a nail?"

This can apply to medical practicioners, even very good ones. I suggest you try to see if your neurologist has consulted with the Infectious Disease specialist and considered other likely alternatives before they conclude the HIV is at the "damaging brain tissue" state. And, of course, if it turns out to be that after all, we're here for you buddy. (As long as you can still read and recognize who we are, of course. *wink*) (I'm kidding!!!)

Good luck.

(Edit to add: What I mean is that the MRI will show the state of the tissues, but there could be several factors that cause the same sort of visible damage. A series of chemical and blood tests for parasites and other factors that could be affecting your nerves seems the way to go, I would guess. I'm not a doctor, just a veteran patient.)

[poztraveler2014]

thanks for the reply. Well my infectologist in Ecuador is an idiot. I hate to say it but he just doesn't care. So it wouldnt really help to ask him.
I did see an ID doctor online the other day who seemed to not be to worried. He is a very good doctor board certified works in a hospital in CT. the ID doctor did recommend an MRI anyway.
As for parasites and what not i live in Quito. Its a very high altitude city so its quite cool, there aren't any mosquitoes that really transmit infections around. They often have stool test and urine tests done on me anyway and nothing else has come up.
Im hoping its all just anxiety and/or depression as the ID doctor online had suggested.
One of the symptoms that worried the neurologist here was that my leg had and my right leg are stronger and have hyperactive reflexes. But now that i remember it, even since i was a kid its worked that way.
I remember my dad saying write your left, kick with your right.
Either way i just want whatever is happening to not get worse till i get back to the states, at least in the US i can get disability and what not if i do get really ill.

[phenethylamine]

My understanding is that HIV isn't commonly supposed to directly damage your body outside of immune system. I thought the virus was mostly restricted to blood and had no reason to permeate different types of tissue like skin, fat, bone etch. myelin from a quick search is made up of water, fat, protein. I'm not saying there isn't an indirect cause I just don't see the connection yet...but your scan results might shed more light...

 MLS and MS I think are "auto-immune" disorders when certain parts of the immune system become confused and hyperactive and start attacking things it shouldn't, like myelin. HIV is more of a deficit in immune function. Increased susceptibility in catching secondary infections, and decreased ability in fighting them.  Think this is why people keep bringing up the possibility of secondary infections. It's common for travelers to get sick in new countries simply cause they aren't adapted to the environment, local bugs, food, water, climate, humidity etch. I'd imagine an immunocompromised person to be at greater risk.

I looked through your previous posts quickly, you mentioned cold hands, difficulty breathing, muscle tightness. When did this begin? What's your regime like? Maybe read up on lactic acidosis? For the sake of eliminating possibilities. What are working conditions like? Do you still take antidepressants?

I'm not a doctor, just brainstorming ideas with you
Apologies for any incorrect, simplistic, generalized information.
(still learning...) . Do your own research as well.

[DodgerDawg]

"My understanding is that HIV isn't commonly supposed to directly damage your body outside of immune system. I thought the virus was mostly restricted to blood and had no reason to permeate different types of tissue like skin, fat, bone etch. myelin from a quick search is made up of water, fat, protein. I'm not saying there isn't an indirect cause I just don't see the connection yet...but your scan results might shed more light..."

phenethylamine,

I'm sorry but this is so simplistic and over generalized, I can't let it go... and I'm not in the mood to give the long answer, so I'll give the short one, and you do the research.

The HIV virus is a "Oncogenic Virus". It's a "Syndrome". I'm not going to go any further...

DD