Sick And Tired And Frustrated

[marshallgurl]

So it has been a while since I have been on the website let alone in the forum posting, but some recently developed issues have got me at wits end and I figured it is time to ask for help.

My main problem/concern is medical care. I am a Disabled Veteran so I go to a VA Hosp for all treatment. Since I started being seen at my local VA in late 2005 I have changed doctors several times. I am now on my 6th Cardiologist and each one had different opinions about Dysautonomia, that is the ones that had ever heard of it. I saw a Neurologist about 6 months ago and have a follow-up appointment this Friday, but he says my problems are not Neurological.

So here is where I am extremely frustrated, Cardio's have no clue what i'm talking about and Neuro's say it isn't their problem. I feel like crap, i'm sick half the time, exhausted, and I don't know what to do. At least they aren't telling me that it's "all in your head".

Well, thank you all for listening/reading, any comments/suggestions/advice would be great. I hope that everyone else is doing well, even if we are all "sick" in a way.

[Sunfish]

hi sarah -

sorry for your frustrations. i know that, for me, the difficulties of dealing with the medical system and other stuff (paperwork, insurance, etc) is often tougher than the illness itself. sounds like you might be feeling the same way.

while i'm not intimately acquainted with the VA system, i have a bit of familiarity with it & had a few ideas after reading your post. it sounds like you haven't really encountered any docs who are specialists in dysautonomia...not something that surprises me. i know that your standard requirement is to be seen by physicians within the VA system, but isn't there a way to apply to see a doctor outside of the system if/ when there isn't an appropriate specialist available within the system? i don't know the details but am almost certain there is some application procedure available; i'm sure it's a pain, but i would encourage you to look into it as seeing a doctor who is actually an autonomic specialist - even if only once - might do wonders for you, not only physically but mentally. i'm NOT implying that you have a mental/ psych issue going on, only that with the run around you've been getting it might make you feel so much better to see a doc who knows what s/he is talking about!!

one other thought would be to see if there's a primary care doc within your system that's open to learning about dysautonomia; sometimes primary care docs are more open to learning & acknowledging that they don't know all than specialists are. if you found the "right" person s/he might also be helpful in the process of applying to see a specialist out of the system as well.

i don't mean to imply that the procedure to see a non-VA doc is something that's easy to do but rather to encourage you that it might be worth considering. it's not that any autonomic specialist is going to have a magic answer for you or an instant cure, but the right one might be able to work with you via only a few appointments in a way that would then help other docs (within the VA) to better care for you moving forward.

hang in there the best you can...i know it's easier said than done!

melissa

[pat57]

http://www.acponline.org/patients_families...ernal_medicine/

[masumeh]

Do you mean NOVA systems? Or just a hospital or doctor in Virginia? Or Virginia Hospital (if so, where is that, exactly)?

I'm currently in Saudi Arabia, but I grew up in VA and I return home every year to see family and check up medically with my POTS specialist there. He's really awesome, and I found him through this website's doctor directory. If you can go to him, I highly recommend it. He's very POTS savvy; his own son has the disease. He's also extremely optimistic and energized about the potential for recovery and living a normal life. I think you can get info from their website: www.childrensheartinstitute.com Or you can check the doctor directory on dinet.org for VA. My doc's the Northern VA one, Dr. Abdullah.

Hope you find a good doctor soon.

[marshallgurl]

Thank you all for your replies.

Melissa, I didn't even think about trying to request an autonomic specialist but I am going to see if I can figure out how to do that while I am there on Friday. So far to see a specialist you have to have a "reason" and a referral from your primary physician, or at least that is how I have had to go about it so far. The "reason" has to be a valid medical reason, not that Autonomic problems aren't valid but they aren't very well known yet so I will keep my fingers crossed that someone up there will help me out. I'm also going to suggest to a few doctors that I know pretty well that it would be in the best interest to them as well as other patients to at least familiarize yourself with Autonomic Disorders. So thanks for responding and it is tough, mentally and physically and from personal experience having been told that I was making it all up it sure takes a toll on every aspect of your life.

Masumeh, Sorry I wasn't very specific as to what hospital, when I wrote VA Hospital I meant Veteran's Area Medical Center (VAMC). I am located in southern West Virginia and have actually looked at the DINET site at Doc's in surrounding states and because of my location the closest facility is at least 4 hours away and that is in Ohio. But thanks for the info, if the VA is willing to pay for me to go to an oustide facility then i'm going to suggest as many as I can if people say they have great doctors.

[Guest tearose]

Can you find someone in Bethesda,MD to help you? Right across the street from the NIH is the "Uniformed Services University of the Health Sciences" which is the hospital and university for the Armed Forces. You should most certainly find at least several autonomic doctors there more than willing and certainly able to help you.

hang in there, keep trying to get answers,

tearose

[marshallgurl]

I'm waiting to find out if there is anything that can be done to try and get me a specialist, and I don't care where they are either.

Saw a Neurologist on Friday, he says I don't have a neurological problem. But he did tell me that my blood pressure is good, stays the same whether standing, sitting, or lying down......i'm no doctor but I think that would be because of the blood pressure meds i've been on for the past 3 years.....

But I will keep lookin and keep trying, i'm not going to give up no matter how bad I feel. And actually I think that my not feeling any better is even more motivation for me to find someone. Thanks for all your help.

[Guest tearose]

You mentioned that the Neurologist said you don't have a neurological problem.

That is an inefficient or incomplete comment to make in a way.

I have problems with my barroreceptor reflexes in my legs and abdomen. My surge of norepinepherine is the way my body is compensating. I am having a "normal" neurological reaction to an "abnormal" physical problem. I have a barroceptor reflex problem in actuality but it is the Neurologist at Mayo Clinic who makes the diagnosis.

[marshallgurl]

I hate to say it but he didn't even seem interested in treating me. He checked the reflexes in my arm and lower legs, had me sit/stand/lie down to check blood pressure, and looked in my eyes with the lights on and off. But that is all he did. The whole appt lasted less than 30 minutes, and honestly, at this point, i'm so tired of Doc's who don't seem to be interested that I can't wait to leave their office. I'm sure everyone goes through this at times but sometimes I just want to give up, like there is no hope in knowing what is wrong with me, just deal with it and move on.

I just don't know what to do anymore.