My Bittersweet Date!

[tachyfor50years]

I have done my best and had walked on the shoulders of giants before I write this post and ask for help, all I need is some answers: This forum is my only open window!

I have been trying for over 15 years to get an appointment with one of the autonomic dysfunction centers in the US since I live in a state that has no doctor familiar with POTS.

Finally, My Dr. and my insurance approved that lifetime appointment, but, here I am struggling again, this time with this high recommended POTS center who gave me a one day Consultation Appointment .

I really want to have some of the following tests if not all. (Most of them are unavailable in my state and I have an approval from my health insurance for most of them):

1) (QSART).

2) Mast Cell Disease.

3) Small fiber neuropathy.

4) Immune system tests.

5) Circulating blood volume tests.

6) Insulin levels and glucose tolerance tests.

7) SPECT and xenon SPECT scans of the brain.

8) Mitochondrial myopathies

One day appointment will not do me any good and this is my last chance.

I don't want to stay like that until I die, spinning my wheels, going nowhere with my treatment.

I don't understand why they refuse to keep me there for some days and have these tests

get done. I really don’t want them to tell me come back after some months to have these tests done; I

want to save time, energy and money.

I have sent them a pile of my medical records which proves POTS, NMH, A fib, SVT, CFS.

I feel like I am trapped by the medical system.

Please tell me what to do and how can I convince them to keep me there for the tests.

I emailed my ex electrophysiologist to speak with them but he never replied (he is retired now).

Am I at a dead end? Hope not.

If you have any suggestion, please tell me, I will be grateful.

Notes

1) When I asked the center why is that, they told me that it has been always like that and the Dr. sees the patient for only one day.

2) I asked them to take me as a volunteer patient for their studies after my appointment, but they told me that I am not qualified and when I asked why, they said we don't know, the doctor did not tell us.

[Lethargic Smiles]

Of course I'm not sure where you're referring to, but I'm guessing it isn't Mayo based on my experience with how they do appointments. If it is, message me! I don't think asking if anyone has experience getting appointments extended or tests ordered at a particular clinic would be considered defamatory and your answers will probably be more helpful.

[looneymom]

I would find a place that would run those test like Cleveland Clinic, Vanderbelt, or MAYO. All these places are set up for that kind of testing. I would call the place to see if they do this testing since insurance has approved it. If this place does not do this type of testing, I would talk to your insurance company and explain that you want to go somewhere else since this place does not do this testing. See if your insurance will allow your doctor to refer you to another place that can run these test. Don't settle for anything less. Hope your insurance will work with you. Getting the testing done is to your advantage.

[tachyfor50years]

Thank you Jackie for your reply, you are right, it is not Mayo!

Thank you Looneymom, Yes, this place that I am referring to is one of those that you have mentioned!

I am really surprised and even shocked at their decision with me!

This center has all those tests yet they are not planning to allow me to have them, why? They are not telling me.

I am so upset and disappointed because my insurance does not cover the other top dysotonomia centers.

[looneymom]

I am so sorry. Do you think the person you called understood what you were asking about? This sounds like discrimination for sure! There must be something that can be done. I think I would call back another day, and ask for someone in the patient advocate office. Surely this place has one or something similar to it. The VA hospitals have them at their sites. Don't give up! Maybe someone else on this site will have another suggestion for you. I would still keep the appointment, especially if this is the only place your insurance will approve. Things could always change after you get there for the appointment. Maybe this is the way this place operates. They won't do anything until they have seen you first.

Which place is this? My son went to MAYO and our insurance had to approve it. Lots of people on this site have been to those other places. Someone ought to be able to tell you something about how this place operates. Hang in there! It's just got to get better.

[tachyfor50years]

The only thing that I think of is my age, I am over 50.

I will pm you about this place!

[sue1234]

Well, you can get the insulin/glucose testing done with a local endocrinologist, so that can narrow hours off of any testing schedule you are setting up. My first thought is maybe they have to see your before they can make a decision what all to test. But, since you are traveling, I realize that can be a pain to possibly have to return for testing. Let us know if you get it worked out!

[Joann]

I would try calling again and getting another person to talk to. I think that scheduling tests is difficult but it can be done. When I went to CC, I had one day with a bunch of tests set up. But it took the scheduler a long time to get them scheduled for the same day and that also meant I had to schedule out a bit. At one point I said I was willing to come back for the one test, because I didn't want to wait any longer than what date they were at. The scheduler then managed to squeeze in the final test.

I had the consultation prior to the tests on the same morning. But, I did have to make several calls to get it all straightened out. For me, the follow up info and care was more difficult to get. Tests were done, but I don't feel that it has helped me at all.

[tachyfor50years]

Sue1234,

You are right about the Glucose test, that is not a problem but I really want to know how do they schedule patients from overseas!

I told them that I have no problem staying there for one or even 2 weeks to have those tests.

Joan,

Trust me I did, but she had no clue except that she was reading from a computer screen that I have been scheduled for 1 day appointment!

I think it will be better if I go ahead and cancel it because I really don't want to get upset and hopeless this time with one of the top centers in the US.