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RecipeForDisaster

Getting access to care

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I called Dr. Christopher Gibbons' clinic in Boston and was told that I needed a doctor to submit documentation on my behalf to see whether the doctor will see me. Then I would be scheduled in June although I could have a tilt table test in December. 

 

My primary really dropped the ball with me because because he was retiring, and I've only seen my new primary, a PA, once. I'm not certain he's going to be a good fit. I've seen an endocrinologist once, as my new primary wanted me to, and he was pretty thorough although he cleared me as far as needing to see him again. I'm seeing a cardiologist next week, basically a random choice because hte onds recommended are not taking new patients.

 

The issue, as I'm sure many of you know, is that many doctors aren't well versed in autonomic dysfunction so I am not sure they will write me up as potentially having a disorder. I did my own research which led me here. If I can't get that, I can't see the one doctor who definitely knows about it. Waiting until June isn't gong to work either. I guess I just hope that the cardiologist is more knowledgeable about autonomic dysfunction than I expect, or that he finds something he can work with?

 

If you can't get care from anyone knowledgeable on this sort of thing, how do you get diagnosed or treated? This label of idiopathic hypotension isn't getting me anywhere. I was blacking out in the grocery store again today and had to support myself on a cart to get through without collapsing. 

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So here is a link to the physicians list if you haven't already seen it: http://dinet.org/index.php/physician-list . You can look up doctors by state and see if there are any in your area or within driving range. These are all doctors who are knowledgable and literate in autonomic nervous system disorders, and may be your best bet to get an accurate diagnosis if you do have POTS or another form of dysautonomia. 

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I don't know where you are, but if you want to go to Charleston, SC, there is a cardiologist at MUSC who treats exclusively autonomic disorders. If your insurance will let you see him, he will take you without a referral from another physician, just tell them idiopathic hypotension, suspicion of autonomic dysfunction. His name is Dr. James Glenn and he is very good.

I had the same trouble in Orlando. Nobody wanted to do any tests, just called it anxiety and told me to deal with it. If you are trying to get seen in Boston, you probably aren't close to South Carolina, but you may have to start there to get a correct diagnosis on your records so doors will start to open for you. I still go there for treatment and still encounter physicians in Orlando that tell me there is nothing wrong with me and I am over medicated. It took me 20 years and so many local doctors I lost count before I decided I had to do something drastic like search out a specific physician who specializes in what I think I had and drive 300 miles to see them. It was SO worth it.

I wish you luck.

Kim

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Unfortunately, not just because of my health, I won't be able to travel that far. I'm in New England. I started out with that list which is how I found Dr. Gibbons. Most of the other doctors I tried aren't taking new patients, only see kids, etc.

 

Fortunately my insurance will let me see anyone without a referral, but I can't seem to find anyone. I hope this cardiologist I'm going to see surprises me with his knowledge or willingness to learn. Even if I can get in with Dr. Gibbons, I can't imagine living like this until June. I'm also a tiny bit afraid of the tilt table test because my throbbing and racing heart feel so uncomfortable without being given isoproterenol or epinephrine. I know it won't be dangerous, it's just such an unpleasant feeling. I feel like I'm definitely hyperadrenergic.

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Sorry you won't be able to travel to see Dr. Glenn in SC. He just called me at home to follow up on some stuff with my last appointment. Good doctors are hard to find.

I was afraid of my tilt table test too. Who knows, you might get lucky like me and pass out naturally, which means they won't have to give you any of those meds to simulate it. Bizarre life we live when we say passing out is getting lucky, huh?

Good luck.

Kim

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Thanks for the link which did give me a few more leads. It sounds like a six month wait and having to "qualify" to get in with any of them, though. 

 

Yes, you are correct.... I hope I'm lucky enough to pass out? I'm sure everyone knows how your record low blood pressure is never documented because it was done manually out in the woods or in a store.... why can't that be at a medical office? Just luck. 

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Hi, again,

I remember thinking how strange the concept of a tilt table test was, it seemed like such an ancient or grueling concept to induce a fainting spell. It took 6 minutes until I passed out on my own also. I hate that test.  Some doctors are now using the " Active Stand Test", here is a paper from Vanderbilt about it; Diagnosing Postural Tachycardia Syndrome: Comparison of Tilt Test versus Standing Hemodynamics

Maybe you can have your PA complete the stand test and record your vitals, then send the info off to the specialists. A holter monitor might help too if you haven't had one yet. I don't remember reading in some of your other posts if you've had a tilt yet? Maybe your GP could order that also.   Unfortunately, all the specialists have a wait like what you describe because they are so far and few between.  You could check for a cancellation list at their offices or maybe have your PA call to see if they can get you in sooner?

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I had the same PCP for 20 years and while he was still interested in practicing he would have done anything to help me. In the last few years he kind of checked out before retiring. I don't think my new PCP is like that at all but I will check with him about doing an active stand test. I haven't had any autonomic testing at all, just lots of bloodwork and ACTH stim. I haven't had a holter in many years, but I do have continuous heart rate data from my Fitbit. You can certainly see what time I wake up by my heart rate!

 

i don't usually pass out from standing... that happens a couple of times per year or so. I get "dim" and wobbly and faint but I can tell that's all I will have, most of the time. 

 

Othe than the increased fluids and salt, is there anything else I can do to help myself? I took myself off three blood pressure lowering drugs because my PCP had sort of checked out by that time and my hypertension was certainly gone. I've tried knee high TEDs and they didn't seem to help. I exercise, very low impact like walking, as much as I can and I think it helps in the long run even I feel I feel awful after a few minutes. I don't think I could manage any stockings that cover the stomach even though they are a lot more effective. 

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