Darlene Posted April 23, 2014 Report Share Posted April 23, 2014 has anyone been to cleveland clinic to find there cause of autonomic dysfunction? if so, what is the name of dr or dr's did you see and were they worth seeing? Quote Link to comment Share on other sites More sharing options...
corina Posted April 23, 2014 Report Share Posted April 23, 2014 Darlene if I remember well, several members have visited Cleveland Clinic lately. You may want to do a search using the search box at the top right of this page. Hope this helps! Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted April 23, 2014 Report Share Posted April 23, 2014 I went to Cleveland Clinic last year, and that is where I got diagnosed. I saw Dr. Shields as my primary doctor, but also saw Dr. Jager during some of my testing. They are worth seeing if you need diagnosed or if you have been floundering for a while without anything that really helps. I was diagnosed and then was told I needed to wait quite a while doing these life style change things (like increased sodium and fluid) before they would even consider doing anything else. This was frustrating for me at the time, but I do understand it. They also offer some training/therapy in things like counter maneuvers and various other things that are meant to help with symptom management. They are pretty good at keeping your doctor update on what is going on, and provide both you and your doctor with the full chart after. Um, I'm sure there is more information to tell you. If you have anymore questions feel free to ask here, or to send me a PM. Fainting Goat Quote Link to comment Share on other sites More sharing options...
Darlene Posted April 23, 2014 Author Report Share Posted April 23, 2014 i was dx in 2004. but i think there is more wrong with me than just that. i have symptoms other people with dysautonomia don't complain of... like this systemic burning sensation. i m tired of taking meds to cover up symptoms, if i can find the cause and treat that maybe i could feel better. Quote Link to comment Share on other sites More sharing options...
spinner Posted April 23, 2014 Report Share Posted April 23, 2014 Ive seen Dr. Jaeger and Dr. Shields (neurology).I dont seem to have classic orthostatic intolerance but most symptoms of POTS and severalother conditions including sleep apnea.Dr. Shields uncovered several high antibody issues. I also did the sweat test. Took mea long time to start sweating.My conclusions are that your sympathetic nervous system can be damaged by lots of things--including untreated apnea, but also excitotoxicity untreated (glutamine) which damages LOTSof body central functions.Onset can apparently be caused by apnea, but also obviously childbirth, leaky gut syndrome,inflammation, etc.Ive found that Johns Hopkins has linked all of these things. I have "sudden onset" like many of you but many concurrent problems. Could have beencaused also by heavy antibiotics.My worst symptoms are breathing problems and exertion and heat intolerance.I went from being a tennis player in 90 degree heat to struggling to walk up stairs overnight. Quote Link to comment Share on other sites More sharing options...
Raisin Posted April 24, 2014 Report Share Posted April 24, 2014 I see Dr. jaeger at CC and he has been very nice.. I see a neurologist also at a CC satellite but I met Dr. Shields during my sweat test and he seemed very nice as well. Dr. Jaeger said he handles the Vascular part of the Dysautonomia and the neurologists cover the rest. I would highly recommend having questions written out beforehand so that you feel you get the answers you are looking for during the visit. Dr. jaeger also has a nurse named Chad who was awesome and when I listed all my symptoms and said I was embarrassed, he said that everyone comes there with a long list of symptoms and that, "you are safe here". How cool was that?! Best of luck! Quote Link to comment Share on other sites More sharing options...
Becia Posted April 24, 2014 Report Share Posted April 24, 2014 I wish I had this experience at cc. Don't get me wrong, it was oksy, but my experience was the same as I had at any other clinic when it came down to it, and my experience with the doctor assigned to my case wasn't that great. I guess it depends on who you get there for a doctor. Quote Link to comment Share on other sites More sharing options...
Aeris5000 Posted April 24, 2014 Report Share Posted April 24, 2014 I actually work in the HVI dept at CC and have become a patient since all this POTS nonsense started. I definitely recommend a neurologist, mine is Dr. Wilson, who is extremely nice and did everything he could to get to the bottom of my symptoms. He has so many POTS patients that he has started doing group appts, which sounds interesting. I hear Dr. Shields is very good as well. If you do want to see an EP, Dr. Jaeger is the POTS go-to man. I've seen another EP who is very nice, but gave me his blessing to see Dr. Jaeger instead, because he doesn't know as much about POTS. Dr Fouad was an excellent POTS EP doc as well, but she retired a few months ago. Just wanted to FYI that since her name is in Dinet's physician list. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted April 25, 2014 Report Share Posted April 25, 2014 I went in 2010 and was not impressed with how things were handled there. I told them I would never come back. Quote Link to comment Share on other sites More sharing options...
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