jaddico Posted January 6, 2017 Report Share Posted January 6, 2017 I have an appointment in May with Dr john Morren at Cleveland. I am not sure if he is dysautonomia specialist . I have been tested x2 and have been diagnosed. I just been getting worst This why I am going for consultation for Autonomic Dysfunction (without POTS). I also have Ehlers Danlos Syndrome also. For those of you who have been to Cleveland Clinic in Ohio, which provider did you see and what was your experience?. Thanks you Quote Link to comment Share on other sites More sharing options...
donna612 Posted January 6, 2017 Report Share Posted January 6, 2017 Hi. I live in Cleveland and I am a patient at the Cleveland Clinic. Dr. Morren is a great physician but he is more of a MS specialist. I bounced from neurologist to neurologist for two years before finding my current doctors and being diagnosed with POTS. I would suggest you try to get an appointment with Dr. Jaeger he is a cardiologist and the one who diagnosed me. I also see Dr. Craciun, he is a neurologist. Both doctors are with the Cleveland Clinic. Hope this helps Quote Link to comment Share on other sites More sharing options...
mechamoss Posted January 6, 2017 Report Share Posted January 6, 2017 I've was diagnosed with POTS / Dysautonomia by Dr. Robert Shields in the neurology department. He has since gone on indefinite leave for reasons I'm not sure of but my experience there was night and day compared to incompetence, skepticism, and unprofessional behavior I'd experienced elsewhere for years prior. His staff was organized, courteous, and professional albeit extremely busy. I filled out a detailed digital questionnaire while waiting to be seen and after some further testing my diagnosis was confirmed. I was also sent for additional testing the same day post-apt as well as given a 24 hr EKG to wear home and send back. They gave me a pamphlet explaining each test and where to go along with directions about how to access their online my chart service. The staff throughout the entire clinic (not just the neurology dept.) were wonderful and I never felt bad asking for directions. These people see this stuff every day so I have no doubt there are doctors who would be more than familiar with dysautonomia / EDS and able to help. That said because they are super busy I'd definitely recommend making a list for yourself of stuff to discuss / what specific outcomes you're looking for to keep you on track (it helped me at least). Also while the online communication can be "faster" I found things really progressed faster when I called the office directly. Heck, both can never hurt. If you've already been diagnosed you may want to look into seeing if you can get transferred as a patient since I've been told that can be faster than waiting months and months for a new patient appointment? Finally, I wouldn't cancel your current appointment even if you schedule with a different provider down the road. Getting established can never hurt with expediting stuff. Good luck! I really hope they can help you. Quote Link to comment Share on other sites More sharing options...
jaddico Posted January 8, 2017 Author Report Share Posted January 8, 2017 Thank you so much donna612 and mechamoss for your feedback. I will request Dr Jaeger. I don't want my time wasted. I am quite a complicated case and I have been through a lot. I live in Virginia and don't want the run around like I have experienced in the past with other providers before being diagnosed. I was diagnosed with Autonomic Nervous System Dysfunction in 2013 with other complications including a stroke ( I wasn't aware because I didn't know I had labile hypertension). The EDS was diagnosed in 2016 by a geneticist. I recently had hernia repair this past November had respiratory depression with anesthesia in recovery room requiring several doses of Narcan The nurses told me that I gave them a hard time ( They didn't listen when I warn them). This wasn't my first time with this problem. I ended up being in-patient rather than going home that day. Post op, my bowels and bladder decided to act up even more badly. I have lost 15 lbs since surgery unintentionally and I am quite miserable. I am suppose to have cubital ulna nerve repair but but I have put off any further surgeries for now. Its been horrible. I thank again you for your feedback Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 9, 2017 Report Share Posted January 9, 2017 Hi, Jaddico, I'm a patient at CC and my experience has been the same as the one's described above. I've seen Dr. Jaeger for a few years now and he's wonderful. He's thorough, honest in a way that's not condescending, and compassionate. He hasn't overlooked or brushed off my complaints or symptoms and referred me to necessary specialist's there who are equally as wonderful. They have a great autonomic lab & staff there as well. My POTS has improved dramatically since becoming a patient there. I wish the same for you! So sorry to hear about all you've gone through. I hope this new year brings you improved health! Sarah Quote Link to comment Share on other sites More sharing options...
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