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Well we went to a neurogist to get help with some of tbe symptoms of Pots/neurocardiogenic syncope and instead was diagnosed with neurastheniia. In other words, he has no idea what he's talking about. This is so disheartening. My daughter had had 3 doctor' s spots and now three different diagnoses. Has anyo e else been diagnosed with this obsolete diagnosis? We don't know who to see next.

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Oh, I'm sorry! Doctors who are not versed in dysautonomia love to assign psychiatric diagnoses to us. I had to look up this term, thinking it had to do with some dysfunction of the nerves, and, was sad to see that it's a fancy term for fatigue associated with anxiety and depression.

I had a Social Security paid psychologist tell the SSA that I had mild depression (even though he had my medical file) because I slouched in his chair (he didn't have anyplace to lie down or prop my feet up and I was presyncopal. ) He didn't know what a any form of dysautonomia was (I know because I asked him.)

I'm not sure where you are located, but I strongly recommend seeing a doctor who has a subspecialty in dysautonomia. That might be a neurologist, cardiologist, or electrophysiologist. Some EDS specialists also are quite familiar with dysautonomia.

Hang in there. I know it's discouraging. I went through thirty-some doctors before I finally started to find the team I have now. Finding my Cardiologist was an accident but it is what got the ball rolling. I had seen a Cardio that is in my PCP practice and he was nothing short of a condescending knitwit. I called my PCP and said "If your wife or daughter was experiencing what I am, who would you take them to?" He got the message and referred me to someone who really cares about her patients and, although she isn't a dysautonomia expert, she knew how to make the diagnosis and then took a supporting role in conjunction with the local expert who is a neurologist. My point being, if you keep at it, you will find help.

Take care,

Katie

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Thank u. That's all we really need at this point a doctor who will support her and help with the additional symptoms of POTS/NCS. The cardiologists only want to prescribe Mododrine for her dizziness and lightheadedness. The neurologist have her meds for her headaches and we ended up in the emergency room bc she had an adverse reaction. The one cardiologist sent out a heart monitor and we didn't even know he had made that decision. The neurologist scheduled an MRI of her brain to rule out a tumor. This has her pretty stressed which is making her symptoms even worse. I just keep thinking positive and trying to pass positivity on to her. I hope we find someone who cares soon and agrees with the POTS diagnosis. Thank u so much for responding and ur compassion. I don't know what I would have done if I didn't find this forum. It has helped in so many ways to ease my worry. Your thoughtfulness is extremely touching during such a difficult time in my daughter's life (as I know u r so well aware of). Thank u. Thank u. Thank u. Also, we live in Pennsylvania.

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Where in PA do you live? Is it close enough to commute to the Baltimore area for doctors? I live in the Baltimore area and could give you some doctor's names if it would be manageable.

I'm glad you found us, too. It is so hard to go through this without other people that understand. We're glad you are here!

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The adult dysautonomia expert in Baltimore is Dr. Ramesh Khurana. He is a neurologist with a subspecialty in dysautonomia and is also a certified headache specialist. He works out of Union Memorial Hospital and has offices in Glen Burnie and Columbia. Dr. Khurana will help with autonomic testing and managing the symptoms as well as trying to find a root cause and/or refer you to the right specialists. If there is any suspicion that your daughter has EDS, there are 2 experts in Baltimore. The one I see is Clair Francomano who is in the process of opening a research center in conjunction with the EDNF. She works out of Greater Baltimore Medical Center (GBMC). I work with an immunologist that isn't specifically familiar with dysautonomia but is great in his field and has a good grasp of mast cell disorders as well as basic allergies. His name is Michael Mardiney Jr.. I have other specialists but those are the basics. Send me a Private Message (PM) if you feel you need or want more information.

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Katybug,

You mentioned Union Hospital in your post above-I pray that you are referring to Union in Elkton? What a blessing it would be to have a specialist literally 30 minutes from me!! There's no one remotely close I thought! I've been at a dead end for almost a year with the doctors I'm seeing. This would be some good news in 2 days of bad news-denied disability and changes in my echo. Not to mention earlier in the week being told my thyroid is all over the place and I'm pre-diabetic!! Ugh!

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Well, good news and bad....it is Union Memorial Hospital in Baltimore City that I am referring to. Where do you live?

The other good news might be that there is an endocrinologist named Dr. Shomali that also works at Union Memorial that works with some of Dr. Khurana ' s dysautonomia patients.

Can you get to the city?

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Thanks for your quick reply!

I'm not familiar with Baltimore at all but that's what GPS is for! I live in New Castle County, DE so probably only about 2 hours away.

This gives me much hope; my eye dr's daughter happens to have POTS and he referred me to a Dr Rowe at Hopkins but when I contacted that office, I found he was a pediatric dr plus he's not taking any new patients of any age-I was very disheartened.

I will Google Dr Khurana and contact him on Monday. Next step is trying to get a referral to an out of state doctor-its new insurance and I'm not sure how it works but I don't think I'm supposed to cross state lines. Fingers crossed!

Thanks again!

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Sure thing. My horse is at a barn in Havre De Grace which is probably a half hour from you. It would take me about 55 minutes from the Havre De Grace exit on 95S to get to the hospital. He will probably have a wait to see him. He does have 2 private offices that may be easier to get an appointment at but they would both be another 40 minutes in drive time for you. He's a good doctor and worth the drive.

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