Don't think ALS tech knew what he was talkin about

[UnicornIsis]

When I went to the ER Wednesday night and Friday night I was told something new and was wondering about it. I went in the squad Wed. and the ALS tech who was working on me said he knew about dysauotonomia. According to him it is a form of Musclar Dystrpohy in that both are "degenerative nerve diseases." I have looked it up and so has Mamma and according to what we have found MD and Dysautonomia are NOT related at all. I'm still wondering however, if Dysautonomia can be called a "degenerative nerve disease?" That is how my doctor expalined it when he diagnosed me, but that phrase has never been used before Wednesday night. Do any of you agree with that phrase being an accurate way to describe it?

[opus88]

Could that person have been referring to Familial Dysautonomia which mostly afflicts those with a Jewish heritage? I don't know much about it, but if I remember right, I believe the FD could be seen as a cousin to MD, and is most often a terminal condition. (Somebody correct me if I'm wrong here!)

I've had a couple of people mention the FD when I say "dysautonomia" and I have to explain that mine is just dysautonomia, not familial dysautonomia.

[briarrose]

MY ADVICE

Unless you see a doctor whom you know he knows what he's doing, don't listen to others. And before you trust him, ask him! where he got his medical knowledge about dysautonomia or POTS! Because if he's one of those doctors that try to bluff their way through, you will be had.

I work in an ER and I've mentioned dysautonomia and POTS to them and none of them (nurses, doctors, techs) really knew until I gave them educational medical information (in the form of handouts from the NDRF, Dr. Grubb and the NIH.) One of the doctors I talked to even thought that POTS was shy-drager. LOL

Nurses and doctors now ask me questions about what I have, instead of assuming they know. Even residents that we train don't recognize it! I'm telling you first hand that the community of med students and residents are not trained about dysautonomia!

So you see, unless the person you talked to has had their own experiences or have had special training they probably don't know what they're saying. Please trust me on this.

Our techs don't have any certificates to do what they do. They were hired and trained by us. We even hired one of the house-keepers to be a medical tech and he draws peoples blood, splints their broken bones, etc.

In case your wondering, I work in a very large city hospital, not some country back roads place.

For a real definition of dysautonomia you can go to this website -

http://www.ndrf.org/

or download the book called THE NDRF HANBOOK for patients with Dysautonomias

http://www.ndrf.org/Reference.htm

or here at Pots Place

http://www.potsplace.com/

Multiple system atrophy is under this category

Here is a website that explains MS - is thought to be an Auto Immune Disease

http://www.nationalmssociety.org/Brochures...t%20is%20MS.asp

When our autonomic nervous system malfunctions, it is known as Dysautonomia.

I hope some of this helps. It is often best to do your own investigative foot work to verify things that people tell you. Don't take their word for it. That is why when I respond to someone on this forum (if I'm not ranting) I always try to provide web links that you can read for yourself.

One of my favorite web pages is

http://home.att.net/~potsweb/POTS.html

[MightyMouse]

Hi-- I'd take what you heard with a grain of salt...maybe a few grains will do better

Here's info on familial dysautonomia.

http://www.med.nyu.edu/fd/fdcenter

http://www.fdhope.org/

http://www.familialdysautonomia.org/

I have been in contact with a mom of 3 kids who all have FD. As far as what she's told me, it's not degenerative.

Shy-Drager, aka MSA, IS degenerative and typically fatal within 10 years of diagnosis.

I've never heard of dysautonomia being a form of muscular dystrophy--although, I have heard of folks with other disoders that develop autonomic dysfunction as part of their disease process (i.e. people with Parkinsons, those with tramautic spinal cord injuries and brain injuries)

Nina

[UnicornIsis]

Thanks y'all. He had actually taken classes by my NCS/POTS doc several years ago. But I still didn't trust what he said really. He found out my dad used to be an EMT a LONG time ago and he kept trying to one-up Dad on everything. When Dad told him he'd been one for 7 years before this Tech had, it just made it worse.

Opus88, you're probably right about him thinking it was FD. Even if that's what it is I don't trust him.

BriarRose, thanks for your input. I still tell people myself, but the doc Friday night just wouldn't listen. He kept ignoring what I was saying and acted like he didn't believe what my parents and I were telling him. It's great to have someone who works in the profession be able to give their opinions and knowledge and experience too.

MightyMouse, thanks for the info from/about the FD not being degenerative. I didn't think any of this was actaully degenerative. But the way my NCS/POTS doc explained it is that my body is constantly sort-of attacking the autonomic nerves. The medications he has me on can try to stablize my system enough that it can regenerate some of the nerves, that is until those get eaten/attacked. And it's a constant cycle.

Thanks for the websites. Mom and I had done some research on the connections before and hadn't turned up anything that would make us believe this Tech.

Thanks for all y'all's input and advice!!