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Newbie Info on Doctors Please!!!


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Hello,

My name is Janine, I am 39 and live in Western North Carolina. I have had syptoms for over 2 years now. I went to the docs originally and was told I was menopausal with an anxiety disorder. (hah) I am an ER nurse and I knew this was incorrect, so after having these "attackis" in front of ER docs and nurses my doc finally believed there was something else wrong.

Here we are 2 years later. They have ruled out pheo and carcinoid (went to Duke, 4 hr drive ugh!) I am in my 3rd week of being on sick leave from work getting ready to make the decision to go on short term diability.

I have a few questions if you can please answer me. Does anyone know a Doctor I can go to for this that actually knows something about it. The cardiologist I see now says I have Centrally Mediated Autonomic Dysfunction. He wrote me an Rx for Proametine and said to come back in 10 days. I really need a doc that knows about this. I would also like to know what many of you are doing to control symptoms. You can read the list on the home page for POTS and I have EVERY symptom on there.

Thanks, Im glad your all here for support.

Janine

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Janine, Welcome to the forum and the wonderful world of pots! :( There has been a huge discussion on doctors here. I live all the way across the country and so can't really help you, but am sure others on the board might be able to. We tend to go through many doctors before we find a fit. There is so little known about this disease, it's difficult to find a doctor who knows anything. It sounds like your cardio is somewhat informed and knows a little. Since he does know something about it, he might have suggestions on doctors you could see as a primary. I hope you will find this board helpful, even if only as a place to vent. Have you read the dinet information? Also if you go to NDRF.org, they have a phone number and are glad to send out many interesting articles about ans. I give these to my doctor and he is very good about reading it and we put our heads together and come up with stuff, some helpful, some not. Again welcome. morgan

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Have you tried the medicine that the dr. prescibed.?????? Your diafnosis is one that is in the family of pots. With pots we drop when we stand, or other variations. It sounds like he might have a clue. I live in Pittsburgh. Dr. Adrianna Selvaggio, nephrologist is avesome. My pcp and her group have 60-70 pots patients Dr. Jeanine Frank at upmc. These are great docs. If you try upmc internal medicine tell them you have some sort of dysautonomia and they will schedule you with a doc. that treats. Good luck. Miriam :(

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Janine

Here is a list of doctor's by Country

http://potsplace.com/physicians.htm

There is also one at the NDRF website but probably not updated recently.

We all struggle with good doctors. I travel a couple thousand miles to see mine and he sends my doctors information on how to manage my case. Try and EPS cardiologist though and ask if they know anything about Dysautonomia or POTS before you see them, otherwise probably useless on speedy help. I don't know what your main symptoms are but there are a few different speciality doctors that see us too.

We all have a tough time because there hasn't been much education for doctor's about Dysautonomia, funny isn't it, the main system of our body. Like owning a car and not having any mechanics to work on it :(

Let me say that you live in a good part of the country to find a doctor. Because the West Coast is nearly out of the picture all together.

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Janine, Welcome to the forum and the wonderful world of pots!  :(  There has been a huge discussion on doctors here.  I live all the way across the country and so can't really help you, but am sure others on the board might be able to.  We tend to go through many doctors before we find a fit.  There is so little known about this disease, it's difficult to find a doctor who knows anything.  It sounds like your cardio is somewhat informed and knows a little.  Since he does know something about it, he might have suggestions on doctors you could see as a primary.  I hope you will find this board helpful, even if only as a place to vent.  Have you read the dinet information?  Also if you go to NDRF.org, they have a phone number and are glad to send out many interesting articles about ans.  I give these to my doctor and he is very good about reading it and we put our heads together and come up with stuff, some helpful, some not.  Again welcome.  morgan

Thanks for the welcome Morgan. I will do as you suggest and bring info to my Doc. My Cardiologist is a good man and is at least listening to me. Thanks again-Janine

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Have you tried the medicine that the dr. prescibed.??????  Your diafnosis is one that is in the family of pots.  With pots we drop when we stand, or other variations.  It sounds like he might have a clue.  I live in Pittsburgh. Dr. Adrianna Selvaggio, nephrologist is avesome.  My pcp and her group have 60-70 pots patients Dr. Jeanine Frank at upmc.  These are great docs.  If you try upmc internal medicine tell them you have some sort of dysautonomia and they will schedule you with a doc. that treats.  Good luck.  Miriam :(

Thanks for your response Miriam. I havent tried the Proametine yet. I have heard some horror stories about it. The bottle is sitting in front of me right now. I was given Procardia to take during my by bad episodes and I thought I was going to die! I may try contacting your doctors group to see if they can give my Docs some treatment advice.-Janine

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Janine

Here is a list of doctor's by Country

http://potsplace.com/physicians.htm

There is also one at the NDRF website but probably not updated recently.

We all struggle with good doctors.  I travel a couple thousand miles to see mine and he sends my doctors information on how to manage my case.  Try and EPS cardiologist though and ask if they know anything about Dysautonomia or POTS before you see them, otherwise probably useless on speedy help.  I don't know what your main symptoms are but there are a few different speciality doctors that see us too. 

We all have a tough time because there hasn't been much education for doctor's about Dysautonomia, funny isn't it, the main system of our body.  Like owning a car and not having any mechanics to work on it :(

Let me say that you live in a good part of the country to find a doctor.  Because the West Coast is nearly out of the picture all together.

I dont know how good this part of the country is. I am a nurse who works here and a lot of Doctors are clueless. I was even given the run around at Duke University Hospital. I feel like I have to jump up and down and scream "Im not crazy!!" which makes me look crazy but at least I get some attention. The worst part about this is that sometimes it gets so bad I feel like Im going to die. But I have lived so far...... Thanks for your reply-Janine

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