Help doctors passing me around

[Persa20]

Hi I have been poz since 1990 and my viral load is undetectable with cd4's 457. I take Reyataz, Norvir, Viread,  Ziagen, potassium, vit D. I have been having tons of symptoms starting about 2 and 1/2 years ago. Extreme hair loss during winter months as soon as spring warms up hair stops falling out. (I am a 40 yr old female so you can imagine my horror) swelling all over especially in legs and feet, numbness in feet and legs, muscle and bone pain, muscles are getting weaker every day it seems, memory loss, weight gain - think may just be fluid with no change in eatting pattern. I have headaches off and on including dizziness. I work full time up to 50 hrs a week. I have gone to Neurologist, Rhemotologist, and today Endocrinologist. Everyone as soon as i mention that i am poz they go into well all the medications you take could cause these problems. And it is like they shut down and do not even bother to check into my symptoms. Just this year i passed out put a hole the size of my head in the wall and had a grand mal seizure that somehow caused a cardiac event. And each doctor finds just a little something to send me to the next doctor with out even bothering to check any of my symptoms or do any extensive testing. They won't even ask me what my symptoms are and won't listen. I feel like because i am poz that is all they see. They do not see me and i do not get the same treatment that a "normal" person gets. They want me out of there.  I wonder is it because i live in an area where they discriminate against us? Would a place like California, Atlanta, or New York treat you as a person not a disease that they want out of their office? I am so upset i have cried since i left her office. My husband and daughter of coarse are mad but they just think it is so easy to just brush it off. They say so what they are discriminating against you just find another doctor. I am now mad and I'm tired of being let down and I'm getting bitter and that is so not me. I don't discriminate against people no matter what and i don't understand it. Does anyone experience this or is it just me? My HIV Dr is the best in the state and he constantly tells me none of these symptoms are related to the medicines or at least none that he has heard about. Either A he is lying to me or B he just tells me that hoping i will somehow trick my mind into believing I'm not hurting everyday. I am out of alot of treatment options due to resistance so there isn't alot to go to from here. I just feel alone and no one to fight for me or support me when it comes to my health. I found out this week that my internal med doctor is a horrible doctor by another respected doctor and was told to find another one before something bad happens. The only thing is he does treat me like a human being where no one else does but yes he does stink as a doctor. So now I'm faced having to find a medical doctor that will treat me. I am so stressed. I want to just give up. Does any of you long-termers feel like i do? Are you able to get good care? Does anyone on these medications have symptoms like i do? Any input would be most welcome.. Sorry if i posted this in the wrong place, not really sure where it should go..

[wolfter]

I'm a LTS also and completely feel your frustration.  A few years ago, I had a similar situation with unexplained symptoms and was almost believing that it was all "in my head".  My previous ID doctor always remarked that my symptoms were unremarkable.  They'd perform a few additional tests and find nothing and schedule a follow up appointment.  I'd go through black out periods, practically pass out and be stricken with severe headaches that radiated down my entire spine.

I took the advice of family members and sought a new ID doctor.  My first appointment lasted 5 minutes with the prospective doctor and he didn't realize I was the one interviewing him.  He never got a call back.  My next appointment was with an amazing doctor who spent an entire hour with me and showed genuine concern.  I immediately knew I found my new doctor.  In short order, he had all my previous records, ordered new tests and finally figured out there was a severe underlying issue.

I'd venture a guess that after this long, you can sense there is an underlying problem also.  I had contacted the nearest ASO to get a list of doctors they recommended and went from there.  If you're not getting the treatment you deserve, perhaps it's time to shop for a new doctor.  It's kind of weird that most people spend more time selecting a new car than a doctor. 

I certainly wish you the best.  I know for a while, I thought I was loosing my mind.  I think I can sense where you're at.

Greg

[Joe K]

Hello Persia and welcome to the forums.  All of us in this forum are Long Term Survivors (LTS) and I can certainly understand your frustration with certain doctors.  You don't say where you are located, so if you want to share that information, then someone who lives in your area may be better able to direct you.  You mention you take potassium, is that something your doctor ordered?  I ask because too much potassium can be just as bad as too little.  Also you mention the swelling in your extremities and I wonder if you have seen a cardiologist?  I have high blood pressure and especially in the summer, my legs will swell and I get a tingling sensation.  Just another area to check.

I would suggest you get a full blood workup and you should be tested for any other infections.  I've had a number of bugs, literally, that created real problems, but were easily cured.  It sounds like you need someone to coordinate a full medical workup, instead of going from doctor to doctor, with nobody monitoring the whole process.  If you could provide some more specifics, maybe we can help you find a good doctor.

And if you haven't, stop in the Positive Women's and say hello.  We have an incredible group of ladies and that forum is for women only.

[Persa20]

Hi Wolfter
Thanks for the heads up about contacting the ASO, I haven't tried that. When you said the part about your appt lasting 5 minutes that is exactly what is happening to me. I know something is wrong i just can't prove it because there is so much going on symptom wise. My thing is if they would sit and ask me questions like your 2 nd doctor did (it for sure would take an hour) i bet they would put two and two together. I am very frustrated but i will try and find someone else who will listen. Thanks for making me feel I'm not the only one in the world having this problem and your best wishes..

Hi Killfoile
I live in the South in a slightly rural area where pretty much everyone knows everyone. The potassium is doctor ordered and even with taking potassium every day i can barely maintain a low normal. This year when i passed out it was low normal i had to drink liquid potassium at the hospital..Whew was that fun. My doctor can not figure out why i am losing potassium but it's been this way for 5 years. I went to a cardiologist years ago due to my mitral valve diagnosis but he was another doctor that i spent less than 5 min in his office. He said i was fine and to just take potassium and i would be ok. My internal med doctor does do an ultrasound of my heart every year to make sure there are no changes to my heart. I am very fortunate to have pretty low blood pressure so far. I do appreciate any ideas you have or pointers. It has been really hot here so maybe that is causing the swelling also.. I do think I'm retaining fluid but not sure why... I am a little concerned that it could be liver or kidney issues but he checks me every 3 months and everything is normal. But i don't like that the Reyataz gives me jaundice and so i getting a little nervous about this drug. I was doing really well on my last combo except i was probably headed towards a stroke and that's why he took me off of it but since then i have gone down hill so to speak with how i feel. And the only drug that has changed was the Reyataz. so it makes me wonder if my body just doesn't like it.
I am going to have a word with my hiv doctor when i go this Tues. I think I'm going to just say ok all the other doctors are saying that it's the medicines you say it's not and so i want you to do a full work up and figure out what is wrong with me and do i have some kind of bug i don't know about etc..etc. I don't know what else to do until i can find another internal med doctor that will give me the time of day.
I will have to check out the women's forum here soon. I work alot which keeps me from getting online. I really probably need to slow down some but it just seems so hard to do when there is so much going on right now.. Thanks for replying and of coarse any input would be appreciated.

[deibster]

Hi Persa;
I hope you are getting some answers and starting to feel better. Please don't feel that you are out of treatment options. It does not sound like you have been on any integration inhibitors, eg. Isentriss. There is also another different type of inhibitor in clinical trials that is expected to be on the market in less than a year. Keep your hope up; there are new developments all the time.

I was on Viread and it was causing a decrease in my kidney function, so that is something that your doc should be monitoring. Best of luck in finding a more caring ID doc. Hugs, Deibster

[Theyer]

Welcome, Persa, Glad you found us and yes I recognise your story, hang on in there .
love Theyer