http://www.cnn.com/2010/HEALTH/09/20...ex.html?hpt=C1

http://rarediseases.info.nih.gov/Res...aspx?PageID=31

Apply to go there. It's just a hop over the ocean. I know, that's easier said than done in your condition. But what if they take you? That would be amazing. You need help and hope. They are also talking about this on CNN's AC360 tonight.

I had to at least throw this out there.


Annie

Annnie,

I know I'm not the Rach this message was intended for but thanks you for sharing this information, I'm quite sure many folks on the board will find these links and this program very helpful.

Rachel

And I'm not Annnie either, but you're welcome, Rachel. Sorry, I couldn't resist.

I guess I should've addressed it to all of the "scary undiagnosed" but Rach is the one I thought of due to how bad off she is and how little help she is getting.

Why do patients have to even get to that point of going to a rare disease program? So many of us don't have that rare of disease yet go undiagnosed for years. It's pathetic.

We have to get these doctors to start working in teams. WITH a smile on their faces.

Annie

Thank you so much for your message it really touched my heart.

Sorry for the delay in getting this thanks to you- obviously you are in the states and Im here over the pond in the uk.

It looks amazing and I will see whether or not I would be accepted as I am not an American citizen. It doesn't say if people outside the states can apply. Its certainly something to consider.

Do you happen to know where abouts in the states they are based? If I ring them I want to know that its not the middle of the night LOL!

Thanks so much Annie xxx

Love
Rach

http://www.nih.gov/
http://www.nih.gov/about/visitor/index.htm

Rach, I feel lucky to have seen this story. It makes me so sad for all you've been through. And angry. How many other people can "give up" on their customers and their job and still retain their job?

I figured that Washington, DC/Maryland might be a fairly short hop over the Atlantic ocean. You'd have to have oxygen on the flight though. O2 saturation tanks while at 35,000 feet, even for "normal" people.

I don't know that it would matter if you are a U.S. citizen or not. It's worth a try.

Can you imagine spending a week with doctors whose only goal is to figure out what is going on with you, no matter what? Patients should not have to wait until they are desperate to get that kind of help.

Let us know what you find out.

Annie

Rach, Has anyone tested you for autoimmune autonomic neuropathy, a.k.a. autoimmune autonomic ganglionopathy?

http://www.nyas.org/Publications/EBr...6-3ddef903e447

http://www.ncbi.nlm.nih.gov/pubmed/10995864

http://www.jneurosci.org/cgi/content/full/24/32/7037

http://www.ionchannels.org/showabstr...?pmid=11474561

http://www.ncbi.nlm.nih.gov/pubmed/19349706

http://emedicine.medscape.com/article/1154266-overview

I had a particularly bad encounter with my neurologist and it put me in a fairly ticked off mood. I decided to put my anger to good use and thought about your situation some more. This is what I came up with.

Your gastroparesis, at least in my opinion, is very telling. Blaming your surgeries for that is kind of like a chicken and egg theory. I think the gastroparesis probably came first. But, of course, I'm only taking a shot in the dark.

I hope you read this. If they haven't done this antibody, get that one doctor who is good to do it. If it's positive, that'll be it - no more making you feel like you're nuts.

I have no idea if this is the answer or not. I had to take a guess at it, for your sake.

Hang in there. I wish you could make it over here for help.

Annie