Lack of medical interest in dysautonomia?

[Guest Julia59]

On Wednesday I had my TTT. Just as I thought----it was normal. Of course I was on all my meds----so no wonder.

Anyway, it's just a pre test for my visit to New York next week. I also refused the wonderful injected drug. There is no way I could handle that---and then travel to New York! The nurse and Doc running the test agreed.

They know I have POTS. They said if I want an accurate reading I would have to be off all meds for a while---I forgot how long they said. I don't really have OI issues. MY POTS is the hyper adrengic type with tachycardia and more chronic fatigue type symptoms, and slow gut motility.

Anyway, while they were running the test we talk about the lack of knowledge in the medical community on dysautonomia. The student Doc confirmed that the ANS is just not covered much in medical school. I said why? I told him the ANS controls all the involuntary body functions---IMPORTANT ONES!

HR,BP, digestion, Endocrine!!!!!

He said there was no $$$$$$$ in it........

Pretty said that it's all about money isn't it?...................

Julie :0)

[opus88]

I'm pretty vocal about my frustration and disgust with the medical world. They are brainwashed in med school (and the western world has been brainwashed into believing doctors know everything about the human body). They know how to test for everything and how to interpret those tests accurately every time, right? Everything can be cured by a drug, right? If you don't respond to a drug or they can't make sense of your symptoms, you need to stop wasting their time because it MUST be in your head, right? It makes me SOOOOO angry!

Their actions and inactions have driven me to alternative therapies. And you know what? It was the best thing that could have happened. I feel SOOOO much better working with nutrition than I ever did with their drugs. Am I cured? No, and probably never will be. But I'm definitely healthier overall and feeling tremendously better since I stopped allowing them to make me sicker while they used me as a guinea pig.

[futurehope]

I beg to differ on "doctors are not interested. There's no money in it." The current experts on dysautonomia are SWAMPED with patients. They can't even handle the load. I've had a doctor at Hopkins and in D.C. turn me away. If a physician is wise enough to notice the need out there, there is much money to be made. My current endocrinologist is interested in helping POTS patients, and I think he is very wise. (Now, maybe, all physicians nowadays, have problems making ends meet due to high overhead, and that's why they're leaving the profession. That's another issue. ) Also, Dr. Khurana (my neurologist) has told me that the equipment used to test us is not cheap and maybe they do not have the money to invest in it for their own practice, BUT, if some doctor became affiliated with a "Dysautonomia Center" that included a multi-discipline approach, I think the patients would start coming. There is a need out there, and the wise physician would recognize the potential. And he would certainly gain notoriety from this forum and well as other internet sites.

Maybe we need to start educating the MEDICAL SCHOOLS in what the need is so they would start investing their instruction time on dysautonomia?

[Guest Julia59]

Futurehope,

Your right---there is much money to be made for those that are interested in the ANS field--------due to the lack of interest of others out there, because they claim there is no money in it. I disagree with those med students! I know some good endocrinologists making pretty good money. I think the problem is greed. There are some med students who are going into fields they shoudn't go into--JUST FOR THE MONEY. Not every med student has that attitude----and they are in it because they have a passion to help sick people.

They do make very good money, but unfortunately, some med students become surgeons because that is where the really big money is. Not to say some don't have the passion to help patients as a surgeon. Some just aren't very good surgeons---and people die---because they were in it for the money. I heard straight from a med student that people don't get into the ANS field because there is no money in it. I disagree....................

Apparently some want to make enough money to buy a $500,000 house----or is it a million these days.

I'm just saying this is one of the sad facts----that not all doctors have the same passion to help patients. It's pretty crazy that a state funded medical school does not cover the ANS in med school----other then the basic function. No details----and no talk about Dysautonomia...........................

So I thank God for those special Docs out there who actually are in it for the "PATIENT".

A major corporation that houses several hospitals in NW Ohio has absolutely nothing on their web site regarding Dysautonomia of any kind----No Familial Dysautonomia, PAF, POTS, NCS, MSA and so on. Nothing! I wrote a scathing letter shaming them for it in the same arrogant way Doctors talk to us---again "NOT ALL DOCS". I got a response in less then 48 hours----claiming they were working on getting approval from the board to add information on the ANS to their web site. Apparently the board must have thought there was no revenue in it, because this was three years ago----and still nothing on the web site on ANS.

I appreciate the fact that you notice these Good doctors who take an interest in this field. We need more people like you to help me get away from my bitterness. I also notice the research being done. I feel for those Doctors who have such a passion to help those with dysautonomia because they are OVER BOOKED. This can be both dangerous to patient and Doc, because a lot of things can be missed from an overly tired Doctor. I had one ANS Doc list me as a 23 year old woman-----I'm 44----and I know I don't look 23---LOL

I really need to try and see the good side of thigs, but it is so hard when you are faced with these realities all the time.

Julie :0)