Seeing New Gp

[friday7]

I'm starting with a new GP. Which I am dreading. But anyway, I have to tell her about POTS and I'm sure I 'll have to explain it to her. My experience with this is not good. Usually they listen and kind of half believe you. They understand when you say Postural Orthostatic tachycardia Syndrome. But what they understand usually is, that when you get up and you feel faint. They equal it to Orthostatic Intolerance. And we all know it is much more than that. the only problem is how to get this info to the doctor so she'll accept it as fact . I remember some time ago, a place, I'm not sure if it was here or somewhere else, had pamphlets explaining POTS and it's symptoms, that you could send for and they would send you so many to hand out to your doctors. I was wondering if anyone recalls this? or where this was? It would really help me to have something written by medical professionals to give to this new doctor. And also my other doctors. ( and a couple family members;) any help appreciated.

[Brye]

Not sure about the pamphlet. My favorite GP response after he figured out I had more than a HA was "I'll be back in a minute, I'm going to have to GOOGLE that one! Love the honesty!! Good luck with your new GP. Hope they can help!!

Brye

[Rachel]

There are some brochures on DINET that you can print and use. You can find a link to them on the right hand side of the main DINET page, about halfway down. I'll also include some links here in this reply to make it quick for you.

Here is the brochure that you can print yourself: Dysautonomia Brochure

There is also a brochure that DINET will mail directly to your doctor: Brochure for Doctors.

I believe DYNA also has brochures somewhere on their website (www.dynakids.org) that they send out to those who request them.

When I go to a new doctor, not knowing if they have heard about dysautonomia or not, I usually bring an article or two about POTS or dysautonomia that have been written by Dr. Grubb or other dysautonomia specialists. Here are two by Dr. Grubb. Some of the articles I have used in the past are no longer online, at least not at the old web links I have. I need to do some google searching for my articles again sometime. But for now, here are a couple that you might find helpful:

Postural Tachycardia Syndrome

The Postural Tachycardia Syndrome: A concise Guide to Diagnosis and Management

It can also be helpful to bring your old medical records.

I hope that your appointment goes well and that the new doctor will be knowledgeable, smart, and willing to learn more about dysautonomia.

Rachel

[comfortzone]

The Neurology department at the Mayo Clinics have cool booklets on POTS ... printed just a few years ago. Could you call them perhaps and have them give you a way to get a couple in the mail? Perhaps you could just tell them what you told us here and that you heard they had a good booklet.... I only say that because sometimes the Mayo name has a bit of clout with doctors... Good luck to you!

[firewatcher]

At this point, I take one of the American Heart Association articles on POTS like the "Renin-Aldosterone Paradox" to the new doc. I pull it out and say: "I have been diagnosed with this (underlining POTS) by this doctor (underlining the doc at Vanderbilt that dxed me.) Then I give them the article. I don't get any argument after that. If you have any articles written by your diagnosing doctor you could do this too. Good luck, I hate finding new doctors!

[friday7]

There are some brochures on DINET that you can print and use. You can find a link to them on the right hand side of the main DINET page, about halfway down. I'll also include some links here in this reply to make it quick for you.

Here is the brochure that you can print yourself: Dysautonomia Brochure

There is also a brochure that DINET will mail directly to your doctor: Brochure for Doctors.

I believe DYNA also has brochures somewhere on their website (www.dynakids.org) that they send out to those who request them.

When I go to a new doctor, not knowing if they have heard about dysautonomia or not, I usually bring an article or two about POTS or dysautonomia that have been written by Dr. Grubb or other dysautonomia specialists. Here are two by Dr. Grubb. Some of the articles I have used in the past are no longer online, at least not at the old web links I have. I need to do some google searching for my articles again sometime. But for now, here are a couple that you might find helpful:

Postural Tachycardia Syndrome

The Postural Tachycardia Syndrome: A concise Guide to Diagnosis and Management

It can also be helpful to bring your old medical records.

I hope that your appointment goes well and that the new doctor will be knowledgeable, smart, and willing to learn more about dysautonomia.

Rachel

thanks this is really helpful!!

[friday7]

Not sure about the pamphlet. My favorite GP response after he figured out I had more than a HA was "I'll be back in a minute, I'm going to have to GOOGLE that one! Love the honesty!! Good luck with your new GP. Hope they can help!!

Brye

LOL Well at least he Googled it. That's good. Some of them just go, oh okay, then continue to ignore the fact that you have it.