Aa
Doctor in Cleveland Area
anyone know of a doc who understands MVP/Dys. that I could go to? Ive been to two that don't know what I 'm talking about when I ask about dysautonomia.
I asked my doctor about dysautonomia and MVP syndrome. He said I have the symptoms that goes with MVP and most of it is anxiety. So, if this Zoloft doesn't start kickin in soon, I'm going to "self-refer" myself to the Neurologist someone recommended with Case Western University Hospitals. I may have some luck with my neuro opthomolgist who could refer me to a regular Neurologist. Thanks for all your help!
What kind of symptoms are you having? If you're having dysautonomia symptoms and your doctor is refusing to give you a referral to a doctor to get tested, it sounds like it may be time to seek a second opinion. (I won't even bother stating my opinion on your doc's comment regarding patients educating themselves about medical conditions. What's that saying? If you don't have anything nice to say, ...) :-D
As I think has been covered amply above, Cleveland has two hospitals with full autonomic testing facilities, so you're in the right city! Halbashes gave you the link to the page with their contact information.
As I think has been covered amply above, Cleveland has two hospitals with full autonomic testing facilities, so you're in the right city! Halbashes gave you the link to the page with their contact information.
I know they aren't synonymous, although when I read back what I wrote, I realize I made it come across that way. I wish I could find the exact article I read, but it was basically saying that a lot of patients who were previously diagnosed with MVP would now be diagnosed with POTS. I don't know which symptoms overlap, and I know they don't have to go together, especially since there are several types of POTS, but I know they can go together, so since uncleoliver was saying she has MVP and wants to see someone who knows about autonomic disorders, I just figured it would be good for her to know that they can go together, and have the dr. check her BP laying down, sitting and standing, in case it could be an explanation. Sorry if it came out wrong.
I hope you are able to find a doctor who will work with you on all of this, too. I think we are all aware that we aren't doctors, but being able to understand what is happening with our bodies is an important part of learning how to cope with the problems we have. Unless you have those problems, it's pretty hard to understand what it feels like, and why we are so adamant for answers. I don't plan on telling a dr. how to do his job, but I do plan on being prepared for an appointment, with questions and thorough explanations of what I am experiencing, and if I happen to find an article that expresses what my symptoms are, then I bring it in. I know the article can't diagnose me, but I know it can help me explain what I'm feeling a little better sometimes.
Actually, POTS and MVP or mitral valve prolapse are not synonymous. I have POTS without MVP.
Thanks for the details. I sounds like they can be anywhere from mild to severe. I have not had the passing out issues, but I'm sure my BP and pulse jump from one extreme to the other in a matter of minutes. I'm going to have my doc check me sitting down and then again standing up when I go Thursday, and I'm sure he will think I'm crazy. He tells me I have no business reading up on medical issues cause I'm not a doctor, but I think we all need to be educated about out own health issues. I'm hoping to get a new doc. soon. Not cazy about this one. He put me an calcium channel blockers and it's messing my stomach up.
Take care.
Take care.
About 7 years ago, the doctors I went to thought it was a neurological problem, and put me on seizure medication. Then I had a week in the hospital with a ton of neurological tests that all came back normal, so they felt it was a psychological problem, and I spent a year and a half in counseling. The counseling helped me to deal with the stress, but the symptoms continued and I was eventually cleared from having any psychological problems, and was sent back to the doctor. In October 2008, an ER doctor thought I had vasovagal syncope, and put me on fludrocortisone, but it made everything worse, and I ended up being referred to a cardiologist when an EKG came back abnormal and I kept having tacchycardia and chest pain. At the cardiologist appointment, they took my blood pressure laying down, then had me sit up for a few minutes and took it again. I went from 90s/60s to 130s/don't remember. Then they had me stand and I passed out before they could finish taking the BP. They admitted me to the hospital, with continual heart monitoring, recurrent EKGs, two tilt table tests (the second one had ten extra doctors who just wanted to observe, which was freaky), and a full neurological workup, yet again. In the end, the neurological tests were fine, and the heart test showed regurgitation on all the valves, a murmer, and issues with severe tacchycardia, during which my body had overly excessive amounts of adrenaline. At the time, the doctor said it was similar to POTS, but he didn't feel comfortable diagnosing it as POTS, because of the overly excessive adrenaline, but a year later we now know it's a severe form of hyperadrenergic POTS. My heart can't pump enough blood volume from one chamber to the other, and my autonomic nervous system tries to help by sending adrenaline, but it sends way too much which causes my body to shut down (I pass out and shake like I'm having a seizure). Interestingly, medications like Zoloft can help, because they can calm down the body's response of sending adrenaline to the heart's rescue when your heart starts beating too fast - which is what causes the panic feeling.
I know this is a really long explanation, but in short, you need a tilt table test to confirm pretty much any autonomic dysfunction. Even if part of the problem of POTS is neurological, the portion of your brain responsible for autonomic function is part of 1/3 of the brain that can't be mapped by an EEG. You still have to go through the neurological tests to rule out other possible causes of symptoms, but in the end, a neurologist and a cardiologist can both send you to have a tilt table test. The first one I had only looked at the heart, and for the second one I had an EEG at the same time as the TTT, to make absolutely sure their wasn't a neurological cause in my case.
Everyone is different, and there are a lot of disorders and syndromes that can have similar symptoms, so a lot of times you have to go to several doctors and through multiple tests before someone can say for sure what is happening. It helps to write everything out, no matter how insignificant a symptom feels, and write out what makes the symptoms worse and what makes them better, as well as what happens before you have a problem. There's a lot of misunderstanding about POTS and other autonomic disorders, so you really have to do your homework and keep trying to find someone who will listen to what you are saying.
Hang in there! Be sure to look up Blair Grubb - his articles have helped me out more than anything else I've found. One of his articles was where I read about the similarities between MVP and POTS, but I'm not sure which one it is, which is why I suggested googling it. Having that in hand might help you make it through the process of finding answers faster.
I know this is a really long explanation, but in short, you need a tilt table test to confirm pretty much any autonomic dysfunction. Even if part of the problem of POTS is neurological, the portion of your brain responsible for autonomic function is part of 1/3 of the brain that can't be mapped by an EEG. You still have to go through the neurological tests to rule out other possible causes of symptoms, but in the end, a neurologist and a cardiologist can both send you to have a tilt table test. The first one I had only looked at the heart, and for the second one I had an EEG at the same time as the TTT, to make absolutely sure their wasn't a neurological cause in my case.
Everyone is different, and there are a lot of disorders and syndromes that can have similar symptoms, so a lot of times you have to go to several doctors and through multiple tests before someone can say for sure what is happening. It helps to write everything out, no matter how insignificant a symptom feels, and write out what makes the symptoms worse and what makes them better, as well as what happens before you have a problem. There's a lot of misunderstanding about POTS and other autonomic disorders, so you really have to do your homework and keep trying to find someone who will listen to what you are saying.
Hang in there! Be sure to look up Blair Grubb - his articles have helped me out more than anything else I've found. One of his articles was where I read about the similarities between MVP and POTS, but I'm not sure which one it is, which is why I suggested googling it. Having that in hand might help you make it through the process of finding answers faster.
What kind of tests did you get to identify that you have POTS. Is a nerological issue more than a cardiac issue? My family doctor keeps telling me there is nothing wrong with my heart based on the stress test except for the MVP. Doc just put me on Zoloft so I think I should start to calm down a little. Good luck to you!
I wish I lived where you do! If you can manage to get in (there's a mile long waiting list), try to see Dr. Blair Grubb. I was referred to him from Washington state, but haven't been able to afford the trip.
From what I've read, POTS is a newer name (within the last 20 years) for MVP, and "panic attacks" are a normal part of POTS. I have hyperadrenergic POTS, and deal with blurred vision when things aren't under control. If you google Blair Grubb, you can find a lot of really good articles that explain all about it, and see if things fit. I took an article with me to my cardiologist, and was very surprised and happy when he said he knew Dr. Grubb and had already talked to him about my case.
Good luck!
From what I've read, POTS is a newer name (within the last 20 years) for MVP, and "panic attacks" are a normal part of POTS. I have hyperadrenergic POTS, and deal with blurred vision when things aren't under control. If you google Blair Grubb, you can find a lot of really good articles that explain all about it, and see if things fit. I took an article with me to my cardiologist, and was very surprised and happy when he said he knew Dr. Grubb and had already talked to him about my case.
Good luck!
Thank you. I think my first step is to get my family doctor to actually refer me to a nurologist. I asked him about dysautonomia and he told me to quit reading stuff on the internet. He treats my MVP as separate cardiac issue as well my panic attacks as a mental issue. I'm seeing a neuro eye doc for the blurred vision and may be my key to getting me in to a regular neurologist.
Are you referring to Cleveland, Ohio? Cleveland Clinic has an Autonomic Laboratory:
- http://my.clevelandclinic.org/neuromuscular_center/services/autonomic_laboratory.aspx
Dysautonomia & Autonomic Dysfunction Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
- http://my.clevelandclinic.org/neuromuscular_center/services/autonomic_laboratory.aspx
Dysautonomia & Autonomic Dysfunction Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Thank you...I did see his name. I wonder if I can get my family doctor to refer me to him. I really don't know if I have dysautonomia, but I have a Mitral Valve Prolapse, hypothyroid and anxiety attacks. I do see a neuro eye doc. for my blurred visiou. Maybe he can refer me.
Dr Thomas Chelimsky, neurologist, at University Hospital is great. He is treating my son for dysautonomia. He is a very caring and nice doctor. We only have good things to say about him. We also see his wife, Dr Gisela Chelimsky, pediatric gastroentrologist.
University Hospital has a complete autonomic lab.
Christy
University Hospital has a complete autonomic lab.
Christy
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