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Surprising Visit With Boston Doctor


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Hello Everyone,

I just wanted to post that I met with the doctors in Boston (I think you all know who I mean). I actually had a very pleasant visit. I was a bit surprised because of some of the feedback that I received before going. I haven't been through everything with them yet though. They were very nice and informative. We are ruling out causes for POTS at this time. I got my appointment bumped up due to the autonomic test results being so abnormal. They would like me to participate in their research. This one coming up is for Nitric Oxide (sp?). Anyone else in this study? I'm all for it because it means I get more testing. The only thing I don't like is being off the meds for a few days before. I take Midodrine and Atenolol which have helped tremendously. It only lasts 3 days though (total of 6 due to being off the meds 3 days before). I saw fairly recent posts on this, but they are ruling out autoimmune autonomic ganglionopathy. They told me it takes a long time for those results and they did a few other blood tests as well. I'm pretty excited about the research study if I get in. I go Tues to see if I qualify. I hope this finds everyone as well as can be.


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Hi Elizabeth,

My son participated in this nitric oxide clinical study at BIDMC in August. It takes months to get the results back - he got a portion of the results back a few weeks ago, and those results may lead to a whole new approach to his treatment. You can send me a private message if you want, and we can exchange more information.


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Guest tearose

Good wishes and I hope you get accepted into the study!

Thank you for sharing this because I never considered the nitric oxide connection to red blood cells until I read this thread.

In addition to POTS, I have an odd type of shape to my red blood cells and so this may be very relevant to a healing path for me to look into.

Many thanks!

best regards,


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  • 2 weeks later...

Ficticious, DO get in touch with them if you want to know your results. Dan participated in the study in August, and we still don't have all the results, but we have gotten some. However, I had to chase the doctor for it - I don't think they would have automatically gotten in touch with me. Hope you find out something useful.


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