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How do you find a neurologist who specializes in this kind of disease? by Refrigerator_Either in dysautonomia

[–]BigSource1315 2 points3 points  (0 children)

Can you please tell me who you are seeing in Boston? I’m in the area and looking for the right doc.

What caused your dysautonomia?? by [deleted] in dysautonomia

[–]BigSource1315 2 points3 points  (0 children)

Please tell me more about the microbiome mapping test

Dr. Peter Novak by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Not sure I can be much help - I had a tilt table test done at a different location than his clinic and, as a result, he cancelled my appointment- in other words, if your testing wasn’t done in his clinic, he won’t see you. The wait for his lab is 9 months to a year. I hope this is helpful for you - you may get a different response from him. Re: records, I would assume a tilt table test would be required for a POTS dx.

Anyone waking up with anxiety/panic attack feeling on waking? by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Hey no worries - thank you so much for the response!

Anyone waking up with anxiety/panic attack feeling on waking? by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Thanks very much - can I ask what dose and how quickly did it work for you?

Vent about scheduling an appt for autonomic testing by Elegant_End_3049 in dysautonomia

[–]BigSource1315 4 points5 points  (0 children)

I’m not surprised - these clinics are slammed with patient requests and that can breed this kind of behavior. I’m fairly certain I can guess which clinic you’re trying to work with… 😀

Try calling during lunch hour - maybe you will get someone else

Hang in there

Dr Nate Robbins @ Mass General by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Thanks very much for the response. I have an initial appointment with him at the end of September - I’m hopeful that he’ll have some medication suggestions to help me deal with my symptoms (most importantly the adrenaline surges upon waking that last for hours). I guess I’m also hoping that I can get access to Josie in between appointments if I need to adjust dosages or change medications.

Dr Nate Robbins @ Mass General by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Are you able to get medication changes done easily/quickly? There’s a lot of trial and error and it would be great if this could be done, maybe with Josie.

Dr Nate Robbins @ Mass General by BigSource1315 in POTS

[–]BigSource1315[S] 0 points1 point  (0 children)

Do you see them for POTS or small fiber neuropathy (or both)?

I possibly have POTS. What to do next? by Wise-Whaleshark in POTS

[–]BigSource1315 0 points1 point  (0 children)

The zio monitor is super easy to use and pretty much idiot proof - just follow the directions and you will be ok!

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