I have been trying for almost two years to find out what is wrong with me, been to too many DRs to count and have been told I must have a pheo or carcinoid tumor but no one has ever found it. In a last ditch effort for answers went to a DR a UMass who seem to understand my "odd" array of symptoms and told me he thought it was POTS. Had TTT, will get results monday but tech that was there said hr went up a lot (not uncommon) and bp dropped by over 20pts. I'm hoping all this points towards finally getting a diagnosis but a little confussed at what it all means. Is POTS curable? what is the timeline for feeling better? how come others DRS don't seemed to know about it?

Hi there...
I'm sorry you have been struggling to find answers - most of us have been too if it makes you feel any better (I doubt it will!). Who did you see at UMASS? I see Dr. Novak there.

Another good place to look for some basic info is www.dinet.org - they have some good links on that page about what helps, etc.

As far as a "cure" goes, well, we all seem to be looking for that. Some people get better, some people quicker than others, and some people don't. Nobody can really tell you which way you will go (they can guess though). Hopefully you will be one who gets better sooner!

You'll find a lot of support here, and as Rosie said...ask questions!

Hi and Welcome!

There is a lot of information at the Vanderbilt website as well. I found it reader friendly.

I noticed that you live in CT like me. I am having a hard time finding a local (CT)specialist. I have a few calls out to my doctors. If I don't hear anything, I'm going to call Dr. Novak. I was just diagnosed on Wednesday.

This site has been wonderful. Everyone is very supportive and forthcoming with information.

Best of luck!

Tish

Thanks for passing on the links. I'm beginning to see how hard it is to get a diagnosis as well as treatment. The Drs I've seen so far are all in agreement that something is wrong and have been treating each symptom but at times it feels like to many cooks in the kitchen and nobody is looking at the big picture. My GP says I'm a puzzle but he is in communication with the Dr at Umass so hopefully the pieces will start to come together. Oh, I'm not seeing Dr Novak but Dr Robotis.

I am also on a quest for diagnosis and wanted to welcome you to the forum. Good Luck in finding answers to your questions. It is difficult to get the medical community to look at the big picture, and sometimes we as patients have to help guide the process. My PCP knows that he needs to help me, but is a bit mystified and referred me to a teaching hospital. I hope Dr. Robotis is helpful for you.

LotusflowerSusan - I love your signature. I went to a AAA baseball game on Monday evening (my bf got VIP passes so it was great!!!). Attending the game wasn't too exhausting because we were close to elevator, parking, and in comfy area. What was exhausting was putting on a peppy face pretending everything was normal because he had 4 tickets and we brought our neighbors. I paid for it on Tuesday...

I think one of the most frustrating things right now is knowing I need help and having Drs just shake their heads and say they don't know what to do. I appreciate their honesty but I've been pushed from Dr to Dr. My endo is at Uconn(teaching hospital) and very good but has tunnel vision and keeps telling me there is a tumor somewhere. I also saw a cardiologist there who said that my symptom were secondary to something else and left me hanging. I'm hoping Umass(also teaching hospital) will be different. ?....Does anyone have gasto issues? I just spent 8 days in the hospital(2nd time in a year) for intense pain under right ribs and constant vomitting. The Drs never came up with a reason, could it be connected to the POTS?

~Wendy

There does seem to be a good percentage of POTS patients that have struggles with GI issues. It is sometimes difficult to get the docs to see the connection, but ANS does work with digestion as well. I think my IBS could be better explained by ANS dysfunction.

Hi,
Maybe you have several separate things going on at the same time.

As far as I am aware, Dysautonomia can cause problems with the GI tract as far as nausea with or without vomiting, delayed gastric emptying and diarrhea but I've not heard of actual intense pain from it. But maybe someone else can touch on this as well.

I saw this on the television on one night...check it out and see if it fits anything you are experiencing. They have to have someone do the ERCP who knows to look for this specific thing when testing.

http://intmed.muhealth.org/gast/patient_resource/common...s/sphincteroddi.html


good luck and hope you feel better soon.

Thanks for the GI link. I have an appt w/ a new GI Dr. today so hopefully he'll have an idea as to what is going on.( I think it must have something to do with the pancreas or duct work) My original GI Dr. mentioned an ERCP but wouldn't consider doing it while I'm symptomatic, and unfortunately he left no follow-up instructions when I was discharged from the hospital so my GP thought I might do better seeing a Dr at UMass since I'm already seeing a cardio/EP there who is familar with POTS.