sally

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Just wanted to say Hi. Hope your new physician gets to the bottom of what's going on. That other doctor that said Pots was an emotional disorder really needs to be educated on dysautonomia. I also feel badly for the other patients he has probably said this to that believed him and didn't look further for answers. Good luck and hope you find answers soon.

Good luck to you.

I'm glad you found a keeper. Hope your return visit goes well and she is able to help you feel better. It sounds like she will be very helpful.

Try to look into Medicaid. Depending on where you are located, they may cover you due to this situation. I don't know if you are able to look into Cobra from your previous employer.... but usually Cobra is very costly. good luck

We get that feeling alot. My girls & I call it our "heavy gravity day" when we bothered by it.

That's wonderful! Your efforts are greatly appreciated! Thank you for your time.

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The name you almost chose is too funny! Although, the name you did choose is cute also. We have a cat named nuisance and and a dog named Pita (acronym). Love your creativity.

Good luck with your new medication, I hope it works well for you.

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I would put a phone call into the emergency phone number and let the doctor call you back on this before I would take another one, especially since your throat felt tight and had a bp drop. Or just don't take it again until you speak with the doctor on Monday if you feel more comfortable with that depending on your situation.

If you haven't already seen this take a look, it has some interesting information you may find helpful. From what I read on a foundation site is that any flux in potassium would cause a problem in people with this problem but didn't state a quanitity of drop or increase. That is definetly a problem having something that is rare, there is not enough information and physicians that treat or understand what is going on within this person with a rare disorder or illness. Keep searching for another doctor online that deals with type of problem that can see you more often when needed and dump the doctor when you can that causes you the grief because it sounds like you'll never convince him no matter what you do or say and he sounds like he is certainly not worth the energy. Best wishes to you and hope you find answers and solutions real soon. Many blessings sent your way. http://periodicparalysis.blogspot.com/2005...-in-pubmed.html http://www.periodicparalysis.org/PPA/Physi...B_SECTION_ID=28 And, hey don't appologize for venting.....people need sounding boards...

Sorry to hear that you've had such a run like that. Is this what you have? http://www.emedicine.com/neuro/TOPIC308.HTM You don't sound like an angry hag as you put it, you sound frustrated with the medical system and how you've been treated in general by them trying to find out what is wrong with you. I think this is a perfectly normal response in this situation by someone. I've seen people go from calm to angry in less of a situation so I can imagine I wouldn't expect any less from myself if my whole life was a challange while battling professionals trying to get answers at the same time. Now that you've been diagnosed with further investigation with a problem like this, do you see any specialist(s) who deal with this type of problem? It sounds like maybe your primary doctor is just not equiped with the knowledge or energy to deal with this type of thing and what it requires and you need to see someone who has the knowledge for this type of problem. Have you contacted the support group pertaining to this problem for help? I'm sure you've done everything possible, I'm just asking. I read a board on what is listed above and numerous people on there stated they've also had terrible problems during diagnosis or having great difficulties getting one spite testing being done. I think when it's not the mainstream illness, some of the professionals just don't have the time, knowledge or energy due to patient overload to deal with things properly. Best wishes and hope things improve for you soon.

Hi Ernie, check out http://www.helpforibs.com I went on this forum for some help in answering questions regarding UC but it's an IBS forum that has a little of everything on it. good ideas and diet things included on there. good luck and feel better soon.

Its always great to get real answers. I'm happy for you and best wishes.

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Hello Becca, Sorry to hear that you are getting such treatment. First, EDS is genetic not psychogenic and can cause problems with dysautonomia and other problems with fatigue and pain etc... If you have a diagnosis previously of EDS RSD and dysautonomia then don't let them shake your tree. Try to find someone else if possible in your situation that will help you cope with your illnesses and how to live better with them not mess with your head and make you doubt yourself and your body. It sounds like these people are purely on a power trip with the little bit of knowledge they may have on these disorders. Just because someone is in an authority position doesn't mean he isn't an idiot. And, if they are not helping with your self esteem and the coping process then they are NOT doing their job. Unless you need these people for some type of paperwork to be filled out try your best to find someone else that understands you. There are a lot of books out that help people cope with chronic illnesses that you may get a lot more out of than being insulted by these people. Even if the book contains an illness that you don't have, the coping techniques are the same. I know it's hard when your already down from illness to stay positive but don't let these people have power over your self being. good luck and best wishes.

Hi we've had tilt table testing and have EDS. It didn't seem to aggravate our joints while having it done although after the testing was over we did feel achy and felt bad for a day or so but I think that was from the drop in pressure etc and not EDS. of course that is us, so you may want to voice your concerns with the person is to give the test to you if you haven't already done so, just to be sure they understand what you are dealing with and they are aware. Not to mention if you are tightening up things on your body such as your legs etc, it can affect your test results. and you're not suppose to move around during the test. good luck on your test.

Merry Christmas to you too! Hope everyone has a happy holiday.

Yes, my oldest who has EDS, has this type of pain. She cannot lay on one side of her body when sleeping because this pain will wake her up and then go away once she repositions herself.

Thanks for fixing the problem, works fine again. great work!

hi, high proteins and low/no carbs in the AM. Pancakes always made me feel worse if I had eaten that for breakfast, shortly after eating that I would experience fast heart rate, drop in pressure, and a drunk feeling would come over me for quite a while. I have also found that eating something that contains high salt at night before bedtime seems to help me feel a little better in the morning.

Hi Mark, Welcome to the site. I am very sorry to hear about your plane crash, that must have been horrible. I'm happy to hear that you survived such an ordeal. We lost a dear friend of ours in a small plane crash (his plane) in April 2006, his son survived, Thank God. This happened in the Pennsylvania area. We are fortunate that you choose to come here to share your thoughts and wisdom both personal & professional as Doctorguest has done. It is appreciated more than you know. I hope you find answers and solutions so that you may feel better soon. Have a Happy Holiday.

Hello, Hope you feel better soon and so sorry you had experienced this scary thing... Your symptoms sound alot like when my oldest daughter was diagnosed with Ulcerative Colitis. Did they do a colonoscopy in hospital? That's how they diagnosed Erin's UC plus bloodtest results and ruling out other stuff as well. When she first came down with UC (before we knew what it was) she had bloody diarrhea out of nowhere but started out small and scanty but this lasted 45 days straight. She had a colonoscopy shortly after that which showed nothing unusual (which i now find hard to believe, personally). Then about 1 month later... out of nowhere again it started up, but this time fever, and horrendous bleeding. She ended up with pancolitis the second time (meaning her entire large colon was affected). That time, she spent 19 days in hospital and lost over 20 lbs. transfusions & all. They gave her long term steriods to help stop it plus another drug at the time, she now takes pentasa & Imuran daily and hasn't had another flare since, thank the Lord! I wish you the best and hope it is not colitis or crohns disease but maybe a weird viral thing causing this. Although, I would advise not to wait if possible on having the colonoscopy to avoid missing what is going on like our daughter had happen at first. But, if it is an auto immune problem causing it...there are very good medications out there to help with the flares or keep them at bay from coming back again at all. Good luck and hope you are well soon. GI problems are NOT any fun to have at all! to look for information check out... http://www.ccfa.org/