Anyone Feel Like There Are Classification Problems With Autonomic Dysfunction?

[bellgirl]

I don't have a lawn, Rama, and to be honest, I used to love to mow the lawn; it was relaxing to me. We live on the side of the mountain now; what little wild grass we have on our property is eaten by the deer in our backyard...lol

I have spasms, tremulousness, nerve pain, and rigidity... Endure...I have more neurological symptoms than most, too. I thought I had MS for 13 years, but was negative in my testing...

[DoozlyGirl]

Rich,

My autonomic neurologist goes every year to this conference and then presents the "best of the best" at a local patient support group meeting. Last year the meeting was in the US (Florida, if I recall).

http://www.americanautonomicsociety.org/

There is very little incentive for large pharma companies to support large scale clincial drug trials for those of us with rare disorders. In recent years, the FDA has given companies with Orphan Drug (market of less then 200K potential patients) status special dispensation (expedited review dates, requirement for fewer patient enrollees, etc.) It's the smaller biotech companies that are interested in these perks. Did you know that it takes 10-15 years to bring a new drug to market, if it even makes it through the clinical trial process at all?

[McBlonde]

Very good point, Doozlygirl. That's also why there are so few POTS specialists....sadly, not profitable.

[Dizzysillyak]

If these experts found a solution their careers would be over. As well as that of those in research.

Fyi .. Did you all here about the woman with me/cfs who no longer failed the rhomberg after

changing her diet ? And that she's been walking normally since sept 2006 ?

No of course you didn't .. Do you know why you didn't hear about this ? Do you know how often this sort of miracle happens ?

You only get 1 guess .. Lol .. Tc .. D

[Dizzysillyak]

I disagree with you rama. There is more to life and medicine than numbers and letters. I think that having discourse over possibilities evokes a creative approach to the situation. Furthermore, doctors can sit and measure norepinephrine, NO, and angiotensin all day but, as we have seen, these quantitative data reveal little information about the cause in a manner that leads to prevention or a cure. Quantitative data is a static approach to a dynamic problem. As per classification, one would not treat a patient with lung cancer the same way that they would treat a patient with asthma. In the pots mindset, it would be: well they both have breathing problems. Tachycardia is vague and indiscriminate. The reality is that there clearly are mechanisms within each of us that are causing this that are being overlooked. Otherwise, there would be a cure by now. By offering a critique of medical behaviors, it brings to light areas to be improved upon.

I totally agree with you. Love the way you summed this up .. Tc .. D

[RichGotsPots]

Rich,

My autonomic neurologist goes every year to this conference and then presents the "best of the best" at a local patient support group meeting. Last year the meeting was in the US (Florida, if I recall).

http://www.americana...micsociety.org/

I did find this cool conference http://www.isanweb.org/

The conference you mentioned is probably good because Vandy is involved.

Regarding bringing new drugs to market, honestly I would be happy if they would just do some off label clinical studies on existing drugs... all they have to do is say they want to test, let's say, hyperPOTS people, then sign up 100's of people then start testing whatever drug they feel would help the most. But my point is they should do it in a controlled clinical environment. Maybe they've done this for one a two drug but I haven't seen the studies about yet. Like I mentioned Dr. Grubb has published very small studies on a bunch of different treatments, but I don't think they were controlled studies, more of an observational or survey type of study.

Best,

Rich