Merit of Autonomic Expert, General or DC Area

[jpsecond]

I am new here and absolutely chockfull of questions, but going to start with a general context introduction and then a question on doctors.

 

Prior to December 2015, I basically had no health issues. Since then, I’ve developed hypertension, hypotension, tachycardia, bradycardia, bilateral pulmonary embolisms, two rounds of hemorrhaging that required blood transfusions, four rounds of surgery, urinary retention, electrolyte issues, third nerve palsy with pupil involvement, quadrantanopia, and more. Initially, the suspected diagnosis was ovarian cancer, but this has been disproved. Then it was pheochromocytoma, which has now also been tossed out. The current leading diagnosis, which has been the case for two months now, is autonomic dysfunction.

 

I almost got a pacemaker in April following needing to have cardioversion with an ectopic atrial bradycardia accompanied by really low blood pressure, but my medicine cardiologist recommended we get a second opinion from another electrophysiologist before going that dramatic as I’ve shown repeatedly I can get out of that rhythm and issues before. I saw him earlier in this week and he says I definitely need a dual chamber closed loop stimulation pacemaker, so I will be getting that soon. I am also seeing the director of the Georgetown Nephrology and Hypertension Clinic next week to get another take on the issues as I am exceedingly labile and brittle, so the management of these new pulse and blood pressure issues has definitely been challenging.

 

 

With that context, my current question is on doctors and who I should be seeing. In addition to the cardiologists and nephrologist referenced, I also have seen neurology, urology, internal medicine, pulmonology, gynecologic oncology, endocrinology, rheumatology, and hematology regularly throughout these last few months. Cardiology and neurology have been working with NYU on a referral, but it seems a slow process.

 

So my question now is should I be seeing someone else?

 

My cardiologist has consulted curbside with Dr. Goldstein at NIH, but they don’t currently have a fellow and so aren’t seeing patients to my knowledge. One of the doctors on the medicine team in the hospital recommended Dr. Hasan Abdallah, but it's my understanding that he charges a concierge fee, so I haven’t moved forward with that one. However, there is a neurologist in Baltimore, Dr. Ramesh Khurana, and an internist also in Maryland, Alan Pocinki, who both seem to have a lot of experience with dysautonomias and so seem like they could help in the confirmation of whether an autonomic process is our explanation. I actually haven’t had a tilt-table test yet as I’ve been too unstable to do it so far this year and the electrophysiologist says they have more than sufficient evidence of the issues from hospital monitors, so it's not necessary. I believe Pocinki also has a concierge fee, but it’s a much more reasonable one that I’d have no objection to. But is there value from doing an option like one of these or should I just keep with my current crew and wait on the NYU referral? 

 

I’m in the DC area, but the Virginia side, so neither of these is horribly convenient, but are also not that bad to see. If you happen to know the DC area, I’d definitely welcome thoughts on either or both of these doctors, but in general, I’d love comments on the value of seeing someone who is more familiar with autonomic dysfunction at this stage in the process. 

 

I’ve had imaging of basically everything that can be CTed, MRI/MRAed, or ultrasounded as well as absurd amount of blood, urine, and stool tests. The quantity of data is actually astounding, but as they said after a half-dozen of my doctors had a conference together during the last admission, they’ve really just been playing triage trying to manage each emerging crisis as it comes and keep me alive rather than figuring out what the heck has happened to cause this dramatic change in health. I’m a physically active, non-obese, 34-yo who has never had clotting issues despite three pregnancies, two c-sections, and repeated orthopedic surgeries who has gone from never being admitted outside of pregnancy to having spent 20% of 2016 inpatient, primarily in either the ICU or intermediate care unit. I really now seem like an octogenarian: on anticoagulants, clonidine, and beta blockers, using urinary catheters, and having strokes. If there’s someone who can figure it out instead of just triaging, this sounds like a good idea to me, but would love the insights of others.

[statesof]

Welcome to the forum, I guess if I were in your position and my insurance covered it, I would try and go to someplace like Mayo clinic where all the specialists are under the same system, can see all the tests results and would possibly allow you to see all your doctors within a week or two's time; since some of your symptoms are quite severe in nature. 

[shan1212]

There's a Facebook group called Dysautonomia & P.O.T.S. Awareness & Support for Virginia/Maryland. If you are on Facebook you can ask to be added to the group. They generally have a lot of knowledge of the local doctors. 

[targs66]

I'm sorry to hear of your various medical problems.  While I can't specifically answer your question, I did want to mention the following: my understanding is that Dr. Pocinki is not taking new patients!  I would have liked to see him myself as I have a family member who knew him years ago when they were both working at GW, and she recommended him highly.  However, I don't know of anyone who has seen him as a dysautonomia patient.

Good luck in deciding what approach to take, and keep us posted.  Of course, if you find that I am wrong and Dr. Poco kid will take new patients, please let us know!

[Katybug]

I am a patient of Dr. Khurana. He is very knowledgeable and compassionate. When you first meet him, he may seem a little clinical but he really has a good sense of humor, is practical, and kind. He does have an office in Columbia, MD in addition to his office at Union Memorial Hospital, so the drive to Columbia should be a bit more manageable. (I have been driving from Baltimore to Georgetown to see a specialized hematologist and it is an all day affair because of the traffic, so I understand the concern.)

If you want an opinion, in general, I do think that having a dysautonomia expert on your medical will be helpful. I have found that with my POTS, EDS, and MCAS , several docs have a basic understanding of them but either their understanding is not in depth enough or they have some misconceptions. I find my docs that specialize in these areas have a much clearer understanding of the disease, treatment,  and complications. 

Take care, 

Katie 

Edited June 5, 2016 by Katybug

[Sylvie33]

I sent you some info via private message.

Best,

S

 

 

[UngracefulEgg]

You might want to see a geneticist. I see one in Baltimore. Message me if you want her info. 

[issie]

For me, I was very complex and had what seemed to be more than POTS, EDS and MCAS. Finally, got More figured out when they found Lyme with coinfections and Protomyzoa Rehumatica. Then made even more sense with the finding of mold/fungus findings. Not sure if this would apply to you. But it was very significant for me. 

 

Issie

[kaevne]

I go to Dr. Abdallah and he takes my Anthem BCBS insurance (pretty big insurance) for just the specialist co-pay.  Not sure where you're hearing the concierge fee info from.

[Katybug]

UngracefulEgg, if it's Dr. Francomano,  her info is on our physician list. I see her too! She is wonderful! 

[kitt]

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