new member

[Alisa]

I have been searching for information for years regarding POTS and found your site today. I was accepted by Vanderbilt five years ago, but unfortunately I did not go at the time because of financial reasons. I recently applied again, but am told I do not fit the "criteria". My symptoms are the same type of symptoms, just worse now. I don't get a clear answer from them. I have had symptoms for 12 years including- syncope seizures, increase pulse rate, fatigue, bladder and bowel issues,

numbness in my hands and feets,headaches,etc. Other than Vanderbilt, has anyone found specialist to deal with autonomic dysfunction?

[Michelle Sawicki]

Hi and welcome to the forum. Each study does have its own set of criteria and perhaps the criteria is different now than it was on the previous study. In any case, we do have a list of physicians that treat autonomic disorders on our website: www.dinet.org/physicians.htm

Michelle

[Guest tearose]

Hi Alisa, welcome.

Are you looking for a research study to be part of or are you looking for an autonomic nervous system work up?

It is not clear to me from what you say what you seek. Have you looked into the differences? Do you have insurance now?

A good diagnosis is always important for you and for any institute that you may wish to apply to for inclusion in research.

Hope we can help you get some answers!

take care, tearose

[morgan617]

Welcome Alisa, sorry to tell you, but I have been turned down by Mayo, Vanderbilt, NIH, Cleveland clinic can't help, because I've had ablation done. I haven't gotten any reasons from any of them, (I assume the Cleveland thing) If you are like me, I just got a form letter with no explanation. I have been sick a really long time now. If you live in the east, I know there are good doctors, but very busy, back there you can see privately. I unfortunately live in the western United States and therefore don't meet the criteria for anyone. I know how cynical I sound, but I finally gave up after my last attempt a month or so ago. A lot of people on this site do have specialists they see privately. Hopefully they can help you. I think tearose is right, a good diagnoses is great, but it doesn't always happen. I have no idea what causes my symptoms, but not knowing doesn't lessen them. You can get into Mayo privately I think, if you have good insurance. You can also try Vanderbilt. This is a great site and hopefully you will find all the help you need here to get through this process. I will undoubtedly never know what is exactly wrong with me, but no one here will dispute or question whether I suffer, so it's a very safe haven to vent and get input. Nothing replaces a good and caring doctor, but it's still nice to have friends that totally understand. Again welcome. morgan

[Ernie]

Hi,

Welcome to the board. I am sorry in a way that you were not accepted at Vanderbilt but in another way I know that you might not miss much. I went there 2 years ago and never got any report or anything new from them. I sent them a 30 page medical report with all my charts and all the previous diagnosis and they did not give me more than what I came in with. They did not even change my meds! So I am sorry that I went because I lost money and 2 weeks of my life for absolutely nothing. It took me more than a month to recuperate from all the testing. I felt that I was treated like a lab rat or even less than that. I don't ever want to go back there.

If you can financially afford to go elsewhere that's what I would do. It's very important to get a report from the doctor who tests you because this is the way you will get medical treatment at home.

We have been discussing Cleveland Clinic a lot lately so you could look into that. There is also Mayo.

Take care

Ernie

[Alisa]

Thanks for responding. I guess Im looking for a workup. I have had alot of different diagnosis and alot of "bandaids" but have not been able to stick to one doctor. They all want to send me to another "Specialist".

I just need clarification of what I have and how to treat it. It sounds like you are all very supportive of each other and I am glad to have found you. I don't have any answers to give my family, friends, or myself. Vanderbilt got my hopes up and we made plane reservations, hotel reservations, and car rental reservations so I can have a two day clinic visit. I went into the hospital on Monday this week and am still here. Vanderbilt called to see how I was doing and I advised them I was in the hospital for treatment (IV therapy). Once they new I was here, they backed away from my appointment and advised me that I was too much of a risk at this time. I am upset, disappointed, and discouraged.

It seems that when I am at my lowest (medically) I would be a prime patient. They want me off my meds for five days but expect me to stay in my home town under my doctors care and wont allow me to be in their presence while weening off my medications. I don't know where to go from here. Now I have spent a thousand dollors to get there and have no appointment. Help.

[Ernie]

Hi,

I had a similar experience at Vanderbilt and I know of other people who got rejected because they are "too sick" and they were told by Vanderbilt that they skrew the data (that is what I was personally told!).

I would be happy to further discuss this experience with you on a personal email.

Ernie

[Merrill]

It seems to me there's a difference between being treated as a patient and being part of a study. If you're part of a study, you need to be off your meds for a certain length of time (as you'd been advised) and not in an unstable place (eg hospitalized needing IV fluids). It sounds like you'd be best served by a specialist who can diagnose you properly and then begin a course of treatment...coupled with lifestyle changes to improve your symptoms. Maybe if you tell us what city/state you're in, someone here will be able to recommend a physician near you who can help. Most of us haven't been part of research studies ... I think getting care would be better...

good luck,

m

[Dawg Tired]

Vanderbilt seemed happy to get me for treatment when I had good insurance. But they set my appointment so far in advance that by the time it came around I had lost my LTD and as a result; my insurance. So I called them and told them of the problem; they took me as a research patient. Then, after 5 days of the "study" told me I didn't fit the criteria. So they put me in another study - the second study was for NMS - but I didn't have good enough veins for them to access so I was discharged on the spot.

But... they DID give me good documentation of the NMS and CFS and that helped my SSDI case tremendously. With the financial straits we were in at the time they were helpful as far as my husband got to stay in my room with me so we had no motel bills from that and they brought him meals when they brought mine.

So my experience was good and bad. I didn't get the answers I wanted, I was terribly drug out by the testing, and I got no treatment.

But I am not as far along with this whole thing as long as the majority of you. I got sick in 2002 and many of you have been battling this your whole life or at least most of it.