Eagle3312 Posted April 22, 2015 Report Share Posted April 22, 2015 Hi I have been dealing with POTS symptoms for a 6 months without a diagnosis. That said I have 90 percent of symptoms and meet the diagnostic criteria as per home pulse monitoring. appointments have been hard to get but this month I have gotten appointment with cleaveland and mayoclinic. My question is should I go to both places or just stick to one?. Thanks for advice Quote Link to comment Share on other sites More sharing options...
statesof Posted April 22, 2015 Report Share Posted April 22, 2015 It's a good question, I would keep both and then you can always cancel the one that is scheduled later on if it looks like the first appointment goes well. In the past I had an appointment scheduled at mayo and I was going to have to wait 5 months to get in, so I just made appointments with local autonomic doctors in the mean time because I could get into them much earlier. Turned out that the local doctors didn't really have any treatment options that they felt would be a good fit for my condition so I ended up going to my mayo one later on anyway. You may find that one doctor is more helpful than the rest, I was able to get diagnosed definatively at Mayo, but am still looking for a doctor who I can follow up with and try medications with. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 22, 2015 Report Share Posted April 22, 2015 Eagle,I've had a lot of success with Cleveland clinic personally but mayo is also is an incredible place. If I were you I would make a list of pros and cons..My local doctors gave me the option of trying to refer me to mayo or Cleveland. I chose Cleveland because of proximity and follow up care. Also, my main pots symptoms tend to lean towards cardiac issues and my lead doctor there is an electeophysiologist who specializes in pots. It just made sense when I compared them. I really wish you the best of luck on your journey! Do you have one that you are leaning towards or both of them?Sarah Quote Link to comment Share on other sites More sharing options...
Eagle3312 Posted April 23, 2015 Author Report Share Posted April 23, 2015 statesof and sarah thanks so much for your advice and sharing your experiences. I am not sure wheather cardiology and neurology would be the best place to start. I am leaning towards both clinics and mayo is a month after cleaveland. Will may be cancel mayo if I get a definitive diagnosis. Am looking forward to get a diagnosis after 6 months of guessing, it all started so suddenly though for me. cleaveland is next week.Eagle Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 23, 2015 Report Share Posted April 23, 2015 Eagle,Your welcome for sharing my experience. Who do you see at Cleveland? Are you also scheduled for all of the autonomic testing? They complete both at My and Cleveland.Sarah Quote Link to comment Share on other sites More sharing options...
Eagle3312 Posted April 24, 2015 Author Report Share Posted April 24, 2015 SarahI am seeing Dr Jaeger. I am scheduled for a tilt table, heamodynamics, qsart and one other test in autonomic lab which I don't know what it is exactly.Eagle Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 24, 2015 Report Share Posted April 24, 2015 Dr. Jaeger is my doctor there.... My experience with having him as my physician has been really positive. He's been thorough, knowledgeable, down to earth, easy to talk to and has thought out of the box. He's also referred me to other specialists that have proved to be so helpful. He sent me to see Dr. Kara Browning who is a Neuro there who specializes in POTS. Also, a few other doctors for conditions unrelated to POTS that he recommended there have helped me a great deal..I'm glad your getting the full work up! You mentioned not recalling one other test.. is the blood volume? That's the first portion of the hemodynamics. http://my.clevelandclinic.org/services/heart/diagnostics-testing/nuclear-imaging/blood-volume-testingThe only other test you didn't mention was the Thermoregulatory Sweat Test. (last test listed) http://my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/autonomic-laboratoryThe nurses and tech's in the lab are so sweet. They try to make you feel really comfortable.. How long are you staying in Cleveland? Quote Link to comment Share on other sites More sharing options...
Eagle3312 Posted April 25, 2015 Author Report Share Posted April 25, 2015 SarahGood to know that you had a such a positive experience there. So the other appointment which i am not sure about is with the autonomic lab. it just says Card ANS. will find out next week I guess!. So far the process of scheduling has been really smooth and every one I spoke to have been very helpful. I am staying there for a couple of days, one day for cardiology and next day for neurology. Eagle Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 25, 2015 Report Share Posted April 25, 2015 It goes by fast because of how busy you are!Please don't hesitate to send me a PM if you have any questions... best of luck to you and safe travels!Sarah Quote Link to comment Share on other sites More sharing options...
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