Cleveland Clinic

[Darlene]

I m am not looking for a dysautonomia diagnosis, but rather the cause. i m not looking to do a tilt either. does anyone have any recommendations of a dr there who will do extensive testing to find the cause?

[Raisin]

Hi Northerndarlene. I see a neurologist there and was happy with the initial testing but not so much on the follow up. But, I have heard good things about Dr. Shields who is in the downtown location. I do see a Dr. jaeger downtown who is more of the vascular side of Pots. He is very good I feel. He said he works with the neurologists. Regarding cause, I suppose it could be vascular or neurological or both but my neurologist is the one who has ran most of the causal testing (paraneoplastic, autoimmune, etc.). They have not found the cause of mine as of yet but I have always been a conundrum wrapped in a riddle. Lol. Best of luck!

[Darlene]

Who is the neurologist you see that you were happy with initial testing and what kind of testing did they do? I don't care about follow up, if I have a problem I can see grubb or bev. The labs I have include basic labs, carcinoid syndrome and lyme. My ANA has been positive the past few times and the numbers keep getting higher, but have not been doagnosed with an autoimmune disease. Grubb and Bev suspect MCAD, but have had no testing to confirm this. I believe there is a cause of my dysautonomia and if I could find the cause, I could get better treatment. I m looking to treat the cause and not cover up the symptoms like I have been. I can deal with a lot, but I can't deal with this burning sensation I get inside my body, most of the time when this happens I am having difficulty breathing. one night about 6 months ago i went to the er and my bp was 113/34. i m wondering if my body doesnt sense an emergency and my adrenal glands secrete epinephrine to raise my bp. so maybe the burning in an adrenaline surge or lack of blood flow to the areas inside my body thats burning. I m feeling like death when this happens.

then a week or two ago my daughter, cousin and I went to out to eat (Mexican food), then we took a walk at the park... we walked up this hill (and i can't walk up stairs or hills), my heart started racing, i was having difficulty breathing, and I felt this systemic burning sensation. i stood still for like 5 minutes or so until this episode passed. we finished walking and we got into the car to come home, a few minutes after i had been in the car it happened again, except this time my vision was funny, my heart started to race, i felt like i was going to puke, i was having difficulty breathing, it felt like my bowls and bladder was contraction (sometimes i go number 1 and 2 several times during an episode). when i do get these episodes i take benadryl and klonopin.

[Raisin]

His name is Dr. Craciun. He has a rather thick accent as he is from Romania so sometimes I have a hard time understanding him. He did a blood test for sjogrens but asked if I would rather have a lip biopsy done which is more accurate (wish I would have done that now). He ran a paraneoplastic panel as recommended by Dr. Shields who supervised my Thermoregulatory sweat test although he seemed hesitant to do so. He also tested for Lyme disease and ordered MRi s. he also did a 24 hr. urine collection for norepinephrine, etc.. He has not tested for Mcad and I am wondering about that also as I don't have the burning sensation but I do get what seems to be surges of anxiety even when I am just sitting and watching a funny movie or having light conversation. I understand what you are saying re a cause. I am a WHY person. I may seem hesitant to recommend because I also have ataxia and he doesn't seem to be able to explain that yet or investigate that fully. I am trying to be a good advocate for myself and he does seem amenable to any suggestions that I have. I am so grateful to him for seeing the Pots in the first place after 11/2 years of others brushing me off. It gets so complex, doesn't it? I wish you lots of luck and prayers!