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Wish Me Luck!


juliegee
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Hi Guys,

I'm finally going to do it- talk to my doctor (an internist) about POTS. My son's been DXed for a few years now and it's been getting clearer and clearer that he's not the only sufferer in this family. I've had symptoms my whole life, sometimes pretty severe, but I always thought I had it under control- somewhat...

Well, things have been getting pretty bad. I've been having a really rough time with my digestion lately. I've just been sprung from the hospital following an obstruction, my 3rd in less than a month. I had no BP when I got to the ER because I was so dehydrated. I'm having a really rough time eating (losing lots of weight) and dealing with severe constipation. My son also had severe motility problems that improved once his autonomic dysfunction was addressed. So, I'm hoping the doc will take me seriously and start some sort of treatment besides fluid and salt. And, I pray my motility will improve as all of this does.

I've downloaded all of the information Dr. Peter Rowe from Hopkins has passed along to me for Mack, my son. I will share that and the wonderful brochure from this site with my doc. Any other ideas? Docs HATE when you think you know what's wrong!

Thanks-

Julie

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Would you mind letting me take a peak at the brochure if it is online?? Also, what has your doc given your son for treatment??? I just ask because I have horrible nausea that I've been dealing with and havent found a med or treatment that helps... :)

Jacquie

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Dear Julie,

I hope the appointment goes well and that your doctor is willing to listen to you about POTS. You're right - many doctors don't like it when we diagnose ourselves! But bring a list of your symptoms, and a detailed description of POTS and its symptoms. Request a tilt table test so that you can receive an "official" diagnosis. Be persistent!

Good luck! Let us know how it goes and what your doctor says.

Rachel

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Guest tearose

Good Luck Julie!

You go for it! Just follow your instincts and present your case and then ask.."what do you think doc?...could it be that I have a similar condition to my son?"...leave a gracious way for communicate and then he hopefully won't get feeling defensive or dismissive.

Keep us posted.

tearose

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I understand how you feel. I'm wrestling with the same thing. I'd like to bring up the idea of POTS with my doctors, but I'm not sure if they've heard of it and I'm not sure if they'll hear me out. Sometimes they make up their minds about my case, and disagree with what I am saying......like I don't know what's going on in my own body! I'm nervous that if I do too much self diagnosing or asking for specific tests, that come back normal, that they'll get really frustrated with me. But i also feel like if I dont that nothing will change. It's tricky to learn how to be pushy with doctors, when you need to be, but not hinder your relationship and communication.....if the relationship is worth maintaining! Sometimes it's not! :(

I HOPE you appointment goes ok and that he really listens to you.

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Thanks, guys- you'll never know how much your support means! It is such a gift to find such a caring group of people, who are all going through the same thing.

My appt. went great. My doctor was very open to learning about POTS. I shared with him the results of my Poor Man's TTT and that, along with all of the rest of my history that he was familiar with, was enough for him. He toyed with the idea of sending me to a specialist (travel involved) and doing formal testing. I had brought an excellent, comprehensive article from Dr. Peter Rowe at Hopkins- that describes the steps in treatment, etc. And, he finally decided to just start treating me! Yeah!!!! I'm a busy Mom & don't have time for travel, etc. I've started on Thermotabs and florinef and am feeling better all ready. He wants to add Atenol in a month after I've worked my way up to .1mg of florinef. I have to go in weekly now for BP checks and electrolyte monitoring.

I was nervous about bringing POTS to my doc's attention, but it was such a positive experience. He was almost relieved to find an explanation for my extreme Reynauds, extremely low BP, severe constipation, etc.

If anyone else is in the same position and wants to begin to broach this subject with your doctor. I will be happy to pass along Dr. Rowe's article. It's step-by-step approach, with an overview of the condition, really made the difference for me.

Thanks again for your support!

Hugs-

Julie

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I'm also glad that you had such a positive experience. I hope you continue to feel better every day!

I'd appreciate it if you could pass along the articles from Dr. Peter Rowe through PM (messages) when you have a chance. My Raynaud's has also gotten much more severe. Thank you for offering to share the information.

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I'm so glad to hear that your doctors visit went so well! That's great news! I hope that the meds are just what you need.

Would you please send the article to me too? Or you can just send me a web page link if it's on the internet. Thanks!

Rejoicing with you,

Rachel

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It's so great hearing from everyone. Thank you all for the support!!! I am happy to pass along Dr. Rowe's articles to anyone who will PM me your E-mail address. Or if there is a spot on this forum to post a link, I'd be happy to make this information available to everyone. (Just tell me how.)

Dr. Peter Rowe is a pediatrician at Johns Hopkins, who specializes in treating adolescents with POTS/NMH. He's on the forefront of putting together treatment programs. Even though the info is for teens, it seems to apply to us adults pretty well.

I hope many of you find help via this article and/or it helps you communicate with your health care professionals.

Hugs-

Julie

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Good to hear Julie! It always warms my heart when someone has a good Dr. experience. I hope this means good things for you and your family.

May I get a peak at that article as well? I wonder why the focus lately has been on adolescent POTS.

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julie -

glad to hear that things went as well as they did at the doc's. i hope that the treatment options bring you some relief...

B) melissa

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