cynog

As I have been researching dys. I have noticed alot of people mentioning gallstones and dysfunctional gallbladders. I was told recently after a CAT scan for kidney stones (soooo painful) that I also have gallstones. Does anyone know how that or if its connected to dysautonomia?

I definitely recommend Dr. Karen Friday also! I saw her in December 2009, then again in Jan. 2010. My next appt is April. After being brushed off by way too many doctors, I got in to see Dr. Friday, and she was wonderful, took her time talking to me, took my history thoroughly, did a physical exam, explained POTS, mentioned things I could do that would help, started me on some medications, I had already had a TTT so didn't do that there, but she did a supine/standing epinephrine and norepinephrine level, which was really elevated showing I have the hyperadrenergic type of POTS. (Supine was 604, standing 1231) Knowing the type you have is helpful in narrowing down which treatments will be most helpful. Clonidine is very helpful for hyperadrenergic pots, so she is adding that. Things that slow down my nervous system are the things that help me, so I am on propranolol, klonipin, and will now start clonidine. Dr. Friday has a nurse that coordinates things for her, her name is Kathleen Masket, and she is AWESOME. After seeing Dr. Friday, any questions you have are done best by email, and Kathleen is good about getting back to you with answers. One of the best things about Dr. Friday is that she understands that POTS patients have to do much of their own research due to lack of knowledge in the medical field, and this is not offensive to her at all! She doesn't get touchy when you tell her which meds you'd like to try, or ask about different things, she doesn't have a big ego that gets offended if someone tries to tell her something... that's a big plus for POTS patients, I think! She gets a 5-star rating from me!

Stacy RN

That is so awesome THanks for your replies! It has given me some HOPE!! Im scared as it will be yet another HUGE expense to my family, so I have alot riding on the outcome. I have a call into them and am waiting for the new patient coordinater to get in touch with me.

Dr. Friday at Stanford - she's a POTS specialist. I saw her recently. She is very good about sending information to your PCP on what you can try for treatment and suggests follow-ups with other Doctors.

She has about a 3-month wait to see her, but they are pretty good about setting up appointments. If you need more info, PM me!

Did she diagnos you? Did she do a ttt ? Thanks so much for the info!

Hi all. I am desperately trying to find a doc. I live in Idaho but have family in California. Does anyone go to a doctor there that totally understands this disease?

(This may be a repeat. I posted it yesterday but dont see it anywhere on the board so Ill post it again

OOOPS Found the post. Sorry for the repeat! Brain foggy lately!

Hi all. I am desperately trying to find a doc. I live in Idaho but have family in California. Does anyone go to a doctor there that totally understands this disease?

Thanks for posting that. I am currently in the no diagnosis ****. Makes you crazy. I feel like I cant tell anyone what I have because if I am wrong, I can just see everyone rolling there eyes. I have no idea what to do next. I have been through so many docs who belittle me and send me on my way after 5 mins of their time. Right now I feel like just giving up!

Is one determined to be a strep carrier simply by a "culture" (like swab & grow test), or some other process? Does it basically mean that you have strep but it isn't in a florid form with obvious symptoms?

Basically i had strep since i was 9 on and off. When they removed my tonsils/adenoids they found they were very full of the infection even though i had no symptoms at the time. They told me i was a carrier because if someone in my family had strep, I probably did the weeks prior to. Also if I became run down, I would immediately get strep. Since coming down with POTS 3 years ago, the strep attacks increase so i just had the tonsils removed. I have not had one problem since

Have any of you had a sleep study. I did and they found that while I dont have sleep apnea, I desaturate into the 70's when I sleep. Its worse on my back. This is something that usually happens to very obese people and I am not so they are not sure why it happens. Now that I think I have dysautonomia, I think its related to it.

I was told by my doctor that without a official diagnosis of any certain thing I am n ot eligible for disability. Is that true? Or did he just not want to help me?

I was told by my doctor that without a official diagnosis of any certain thing I am n ot eligible for disability. Is that true? Or did he just not want to help me?

Thanks for your feedback...the challenge I guess will be finding a doctor...thats where im at a loss. I had several episodes of very bad strep throat and then a tonsillectomy. Not sure if this could have aggravated things. I have been reading about EDS and am starting to think that maybe this is a possibility. I have many of the manifestations of this disorder. Does anyone know who specializes in this? I have done the poor mans tilt table test. I actually stood without moving for close to 2o min. In that time my bp went up from 130/85 to 145/105, heart rate went from 9o to 120-130, feet numb and shooting pains, pins and needles, and turned purple blotchy. My hands swelled with red burning palms. I felt awful. If anyone has any advice on how to find a doc or knows a good one sort of out my way (willing to travel a little) here in Idaho, please send it this way. I'm stuck and dont know how to proceed. I dont want to go back to my doc since he dismissed this before and then the last appt I had with him he said to me (and I quote) "There is something definately wrong with you but I am too stupid to figure it out." He offered no suggestions, except here try this different beta blocker. I CANT TAKE THESE! It doesnt even help my HR so i dont know why they keep shoving them down my throat except that they have no idea what else to do.

THanks for ANY advice!

Cyndi

Hi all! I'm new to this board and looking for some help. For approx 18 mos been having bizarre symptoms. The one that brought me to the doctors was my high heart rate and swelling in the hands and feet (especially with exercise and heat). I have had all kinds of tests. My doc thought it was a pheo, sent me to endo and she ruled it out. A few months later I saw the show on TLC (Mystery Diagnosis?) and thought the lady sounded just like me except I dont completely pass out. Started researching Dysautonomia and found this site. I was floored! I have every symptom! So I printed it out and showed it to my doc. He read it , kinda shrugged and said something like, "you dont want to have this, its incurable and hard to treat. I dont think u have it." Thats it...no tests nothing! Since then I have had tons of blood work, 2 holter monitors (inappropriate sinus tach), an echo (normal), sleep study(no apnea but found I dont oxygenate my blood when sleeping O2 levels in the 70s), (PFT"S for shortness of breath, Normal) seen 2 cardiologists who were just insulting, and tried to put me back on beta blockers, which I do not tolerate, bad side effects (nobody believes this cause "it's what we always use for sinus tach and high bp"). A few months ago I started having severe fatigue and joint aches so I begged my doc to send me to rheum. He diagnosed me with hypermobility joint syndrome. Having no clue (neither did the doc apparently) that there was a connection to this disorder, I was furious and discouraged. Then my mom called to tell me she thought she knew what was wrong with me...she had seen the show and thought it sounded just like me! So I turned my attention back to this site. That was when I saw the connection to the hypermobility syndrome...once again I was floored. I know I have this disorder! Thank the Lord I'm not just crazy, or lazy, or all the things people have accused me off all this time. I know that all these different symptoms that seem so random are tied together! I have been validated in my own mind even though I cant say I have it cause I have n ot been diagnosed.

Now I dont know what to do because I live in a very small town in southern Idaho and no doctors here know what it is!

There is no doctor close! I'm trying soooo hard not to get depressed but I cant work(I'm an R.N.) and we are on the verge of bankruptcy due to this and all my medical bills. Your stories and posts are pretty much identical to the symptoms I experiance and I cried when I read them cause it was like reading about my life.

If anyone can HELP me I would be so grateful...Im so sad, discouarged and just feel so awful all the time..Feel so alone...nobody understands, or even tries too...