Where Do I Go From Here?

[IDreamInColor]

When I was diagnosed by my cardiologist, he said I had dysautonomia, I then proceded to ask him if it was "pots", and he said "most likely." But thats not good enough for me, I need to know if I have something underlying such as shy-drager, or pure autonomic failure, or any of those. I have also realized I need to take this into my own hands and and this is where you wonderful people come in.

I will be seeing my cardiologist on the 3rd, are their any particular tests that I should ask for that might be helpful in determining what I have. I have also been reading about mast cells and I think it might be a factor here based on all my diagnosis's and symptoms.

Also, I am located about 20 miles west of cleveland Ohio, does anyone happen to know of a dysautomia specialist in this area?

I'm kinda feeling lost and don't know where to start or what to do. Everyday brings more and more symptoms and worsening of my current symptoms. I had another meltdown today and I'm having trouble "getting a grip." This is no way to live, I stopped living in 2005.

[potsmomma]

Cleveland Clinic has an autonomic center which is where I went. I thought it was pretty good - I saw Dr. Jaeger and a female doctor but can't remember her name. I have also heard that Dr. Robert Shields (neurologist) at CCI is good. CCI did a good amount of testing but I don't know that I truly learned anymore than I already knew. However, I would highly recommend you see Dr. Grubb in Toledo. Everyone that sees him loves him and he is learning about MCAD so he would be helpful on that front. I have Ehlers Danlos and spent a full year after my trip to Cleveland Clinic getting diagnosed. Dr. Grubb probably could have done it within the first five minutes of my appointment.

Good luck. I know it is VERY hard to live with this but have hope because you are on the right track! If I could give you any advice, go see the experts (like Dr. Grubb) for your conditions despite the long waits. It will save you so much time and money in the long run.

[mwise]

I agree with Potsmomma. They say Dr. Blair Grubb is the best especially with POTS. It is easier to get into his nurse practioner as it may be a 6 month wait to see him personnally. He is at the University of Toledo Medical Center in Toledo, Ohio. I follow at the Cleveland Clinic with Dr. Robert Shields, MD Neurologist. I just love him. He will spend quality time with you. He has helped me alot. I have Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy). My blood pressure drops 40-50 points when standing after

3-5minutes. Dr. Shields will run a battery of tests on you to find the cause. I got my diagnosis pretty quickly from a tilt table test and QSART. Keep us posted.