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Posted

Hello all-

 

I’m new here and, like all y’all, am looking for answers. I moved back to the States this summer and am looking for doctors to help me. My family and I were in England where Prof. Mathias dx me with autonomic dysfunction but we left before we could get any further.

My story is rather long, tbh- lots of threads weaving through to try to stitch together. I describe myself as a human Medical Venn Diagram.  😏I need a dr who will be willing and able to spend time with me- not just think, “Welp- here’s another POTs patient!” and give me the same ol’ same ol’ treatment b/c it doesn’t work for me. (That’s what Prof. Mathias did at first. I actually had 2 full autonomic testings with him, 7 months apart, b/c everything had changed so much.)

ANYwho...

I’m in the DC metro area and, after seeing a regular neurologist (total waste of time 😒), I have an appt with Abdallah at the end of January. However, I’m close enough to Hopkins to go there, as well. The only doctor I see listed there as a POTs specialist is Dr. Tae Chung. However, I’ve not seen anything in the various message boards about him.

Does anyone here have any info on him? You’d think Hopkins would have a POTs clinic ala Mayo, but....I don’t think so...?

I also am on the waiting list for Dr. Goodman in AZ. I’ve been waiting since October, soooo.....not too optimistic about that anymore.  😒

If anyone has any info on Chung, I’d greatly appreciate it!

Thanks!

Posted

I've seen his name, as well, but I don't know anything about him.  I am on Maryland's eastern shore.  I don't know if you'd want to travel to Salisbury, MD (here) but I see Dr. Emmanuel Nsah who was at Hopkins and is a specialist in autonomic dysfunction.

Posted
16 hours ago, MomtoGiuliana said:

I've seen his name, as well, but I don't know anything about him.  I am on Maryland's eastern shore.  I don't know if you'd want to travel to Salisbury, MD (here) but I see Dr. Emmanuel Nsah who was at Hopkins and is a specialist in autonomic dysfunction.

Thank you for the recommendation! Salisbury is a bit of a hike (3hrs) but I’ll gladly do that if I don’t find anything closer.

Strange how there’s no info on Chung, especially since he’s at Hopkins. 

  • 2 weeks later...
Posted

Hi. I'm new here, too--seeking diagnosis. I also found Dr. Chung's name and from what I read on the Hopkins site there is a POTS Clinic (out of Greenspring office). It must be new bc there is not a whole lot of info. I called to make an appointment last week and Dr. Chung is booked into 2020 (!!!), but they just hired two new people. One is an NP and one is a physiologist. I have my first appointment Wednesday, EMG next Tuesday, and I am being referred for a TTT with just one call. I'd say look at his page again on Hopkins and make the call to the number there. Good Luck.

Posted

Dr. Chung is great, as is his NP, Lan. I’m not sure about a specific POTS clinic, they have a main office in Lutherville that they see me at which is like a “physical rehab clinic” or something. He spent over an hour with me the first time I saw him and Lan spends however much time is needed too.  Because of this, though, expect that your appointment time might start late. Like, by an hour or so. They do have POTS specific physical therapy they work with at a couple of Hopkins rehab locations.

Dr. Stacy Fisher is who I saw first because Dr. Chung was booked 8 months out. She got me in within a month and got me diagnosed with VVS at the UMD downtown Baltimore location where they can do TTT. She’s also really nice, is a cardiologist. She encouraged me to see Dr. Chung in addition to her since he is neuro and comes from a different perspective. He is the one who specified I have POTS w/VVS.

I will say, they’re busy practitioners, and they also both still teach I believe and aren’t seeing patients full time. I had to reemphasize parts of my story that seemed to be getting overlooked, but they also listen and try to make sure they’re getting the big picture. 

Hope this helps!

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