BendyScooby

Thanks...well I'm off to see doc tmr now not today as my appt was changed. So tired UGH. Know what you mean about foggy. Sometimes I think I'd be quite happy to jus stare out of the window all day. Might see if I can print something off. Will let you know how it goes. Haven't had a sweat test. aybe I'll suggest it. I sweat like **** actually.

Needing the loo brings my symptoms on as does being hungry, being thirsty, being tired, being too hot, having a cold or having a period. Don't know if anyone can relate to that?

I've had that in London *** Prof M and just to warn you...it's not nice. It doesn't hurt as such but it's very, very, very uncomfortable indeed. Also when I had my results they came back unclear so it doesn't always guarentee results. I'm going back to London Tomorrow to see the rheumys to see if I an get furher tests.

I don't know I guess I'll ask. I know I've got it, I've researched into it for a couple of years now but I've never had a definite diagnosis. One of my rheumys rekoned I probably did have it even though it didn't show up in the tests but I need the official stamp so I can get the care I need. Seeing a new rheumy Thusday now, old one has left...great. So getting nervous. If anyone has any experience of challenging a diagnosis input would be much appreciated. I hav to go a long way to see him and spend a lot of money so I need to make the most of it. Can I ask what your other symptoms were Meg and did they show up on testing? x

Howdy folks sorry it's been like ages since I popped in and now I'm back I want somhing. It's just that two years ago (just to refresh everyone's menroy) I had a tilt table test and 24 hour blood pressure monitor test for suspected dysautomnia as my rheumy thought I was a walking advert for it but tests came back negative. Even though I fanited on the tilt which I thought was an automtic positive result. I also couldn't actually wear teh BP mnitor as my veins were swollen. My Rheumy was astounded by the results and so was I. Since then nothing's been done about it and I've declined rapidly to the point where I'm almost house bound. I also have Ehlers Danlos Syndrome and mental health probelms which doesn't help. My main POTS like probs are fainting/lightheadnss, dizzyness, anxiety, palpitations, excessive thirst, excessive sweating, foggy head and weight loss. I've been tested for other stuff and all the tests came back normal. My GP agrees I need specialist care and I'm due to see my rhuemy on Wednesday so I would appreciate pointers or advice before I go to ensure I get referred again to the correct people and this time get a diagnosis in order to get the treatment and care I need. I can't go on like this I'm 32 and feel like an old lady. THANKS!!!!

I have exactly teh same problem...been tested for infections and came back normal. I also bleed though after sex and in between periods. Saw a gaenocologust...just have to wait now to see my GP

Yup...been checked for everything a blood test can check for. Evreything came back normal. AM going back to see my GP in two weeks (first appt I can get) and chat to him about it then. Also when I see Dr Hakim (at the hypermobility clinic in London) I'll tell him to see if thre's anything he can do. he originally refered me to the nuero in London so perhps he can refer me back. No way I can wait a year. I'm twicthing so badly now it's hard to eat anything coz the food goes everywhere! I'm not sure if I'm seeing any specific neurologist locally.

ARGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH I got my letter yesterday from the hospital and it said I have to wait up to a year to see a nuerologist. I'm fuming as I'm having convulsions and my thirst is worse than ever. Also fainting and getting blurred vision. getting worse and worse. I'll probably be dead in a year! there's no point in me waiting that long at all. Besides...how do I know that when I do finally get to see them they'll not just say there's nothing wrong like the neurologist in London did?

Thanks again guys...Joe I have EDS3. Funny you should menion that coz when I was lying on the table the doc mentioned how slim I was because she couldn't keep the pulse thing on my finger and seemed surprised by it but as I'm Marfanoid and have exremely long and thin fingers as a result she really shouldn't have been. I told my consultant who reffered me about the lack of diagnosis and even he seemed surprised. Maybe the local heurologist will pick something up because the dysautomnia tests were carried out in London.

Don't know what my heart rate did they didn't say. My blood pressure dropped dramatically though.

Thanks for your help and concern guys. I've had thyroid tests and ECGs. Haven't had an ultrasound on my heart on a few years though. had a full blood count and diabetes tests. yes the tilt table brought on my symptoms including fainting. Have had an EEG too.

They didn't say why they thought I didn't have it. They did a tilt table test, froze my hand, gave me breathing excersises, took my blood pressure and did blood tests. They couldn't do the 24 ambulatory blood pressure test as my veins were too painful.

I was diagnosed last year via a physical exam.

Hi guys, even though, after my grusome tests in April, they said I didn't have autonomic dysfunction I've ben feeling really ill. I've been fainting, feeling dizzy and sometimes like the room is spinning. I also get a funny feeling in my head and my veins are swelling up big time. I'm also having convulsions, feel irritiable and am constantly tired. The constant thirst is driving me nuts too. I went back to my GP and he's now referring me to a local neurologist.

No I didn't have any of the numbers, results anything. Not that I would haev understood em. Dr Hakim wrote to me telling me that it was normal so I emailed him and he said he thought it was odd and that I should ask them to look into it which I just did so am waiting to hear from them now. It wouldn't bother me too much bt my sypmtoms have been getting worse. And that sezeire (sp?) the other morning was bizzare.