[AnnieB3]

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

[craftyRCC]

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

[AnnieB3]

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

[rach73]

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

[AnnieB3]

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

[AnnieB3]

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

[rach73]

hi Annie,

sorry I haven't responded before but my laptop has gone to computer heaven! I had to buy a new one and wait for it to be delivered so I have been without proper internet access for about 2 weeks.

Im just in the process of getting all my favourite sites set up and trying to remember all the passwords. As soon as I get this sorted I will take a look at the stuff you have posted for me.

Thank you so much and many apologies for the slow response time.

Love
Rach

[rach73]

Finally got the new laptop sorted! So I have had a look at the links you posted. Someone else suggested aan a while ago but I haven't seen the links that you had posted so thank you very much for those.

I, like you think the development of gastroparesis is like my body waving a huge great red flag to the medical profession! But my GP is currently trying to tell me that I have IBS, although he did admit it was very unusual to have vomiting with IBS. I would say its pretty unusual to have IBS without constipation or diarrhoea, and I dont think I have heard of any cases of IBS where you vomit undigested food 9 hours after the meal. But hey I'm not a dr Im just an irritating patient! What the hell would I know? I would like to say I am sick of it - but I am sick so bloody often its no longer funny! LOL

Thank you so much for posting this stuff for me Annie I really appreciate it.

Love
Rach

[AnnieB3]

Rach, I'm sorry your computer broke! Why can't they make those things to last longer?

I go a little nuts with the lack of logic doctors often express. IBD does NOT cause gastroparesis . . . though I'm no expert on it. Gastroparesis is a nerve/muscle thing.

Inflammation in the bowel can be caused by many things, like a lack of stomach acid, too many NSAID'S/pain pills, etc. And finding the cause is always what should be done FIRST!

Didn't you say at one point that Pred helped or am I having a brain fog moment?

I hope you will get someone to run that test. It may not be that either but I can't stop thinking about what it could be and if it is MG plus something else.

I hope you will get some help soon but, more importantly, feel better soon and be able to keep some food down!


Annie

[rach73]

I think I have had very mild gastroparesis for years. I started having migraines when I was 10/11 years old and an attack would have me vomitting undigested food. My GP at the time said that my stomach was shutting down during an attack. On and off for years I would have one maybe two incidents of vomitting undigested food. Ive always had problems with nausea especially first thing in the morning. I remember getting ready for school and wretching when cleaning my teeth. So its always been an issue.Its just slowly got worse.

I have problems with too much stomach acid - I get awful reflux where I can vomit in my sleep. I can go a couple of days with no problems and then woosh acid going all up the back of my throat. However this is a common symptom with gastroparesis.

Prednisolone helped with the MG symptoms like ptosis, but it made me manic and I had a problem that I put on 50lb in five months as I couldn't stop eating. I was fine eating wise when on steroids lol.

Ive been a bit better and I am down to vomitting about once a week now instead of everyday. I have learnt I have a few triggers that make me worse, so onions cause me a lot of pain, diet coke and coffee makes me nauseous, cheese is an issue but I am finding it difficult to leave cheese alone because I love it so much! Smells are bad as well, if the dogs break wind (or even my husband lol) I am wretching where that normally wouldn't bother me. We have a new shower gel and I can't use it as the smell makes me heave. I used to have such a strong stomach very little would make me sick. Its just so bizarre.

I am with you that whatever I have its MG plus something else. The MG symptoms wax and wane at the moment. A couple of weeks ago they were bad and I had to take mestinon. Other times they are managable withouit meds but that is because I have modified my lifestyle so much.

Thanks for your help Annie.

Love
Rach