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Some surprising news from OHIO. Docs are actually


LindaJoy
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Hi, everyone,

Anyone who read about my ER experience last week knows that I called and reported my feelings about the doctor I had who blew me off and said I had depression, even though I told him of my POTS diagnosis. Anyway, I didn't think I would ever hear anything back. I did.

It seems, the patient advocate at the hospital I called contacted everyone she could think of to tell them about what I told her about POTS. She said she was received with great interest. The educator at the hospital is even considering putting POTS on the agenda as one of the classes docs at the hospital will need to take. To prepare, they asked me to put together a POTS packet for them to review. I had another doctor's office call and request POTS information after that. I thought, Oh, this is too good to be true.

They put me down as a POTS patient who would be willing to talk with them about POTS. I would LOVE to educate some of the doctors around here!!!! I put together three packets so far, one for the area hospital and two for individual doctors (I'm sending one to the doctor I had years ago who told me to just keep taking Xanax so I'd leave everyone alone).

I'm excited about the progress, but I don't want to get my hopes up too much. We all know how doctors can be.

Just wanted to let you all know. Oh, and the patient advocate said that she reported the doctor to his supervisor, and I should be getting a call once he is talked to. I hope so, even if it's just to say that he was warned to take patients more seriously from now on.

Linda

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Guest tearose

This is a great turn around Linda!

Good thing they know not to mess around with you! You would have reported that ER doctor and now, they turned this all around to make something good come out of it for you and with you!!

Terrific!

thanks for sharing this!

best regards, tearose

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Hi Linda..I think it's great that you have the opportunity to educate people on this condition!! I was wondering what you used to compile your info. packet..do you use the info. on DINET or did you get it somewhere else? I often refer others to this website..but feel it would be a good idea to have some things printed out to present to others when needed.

Good luck with everything! :rolleyes:

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Thanks, everyone, for your support. I dropped off the packets yesterday. I hope I get some positive feedback, like they're actually learning about POTS now!!

Wareagle, I downloaded information from the DINET sight, mainly the introduction to POTS and the symptoms list that follows. Then, I have a report by Dr. Grubb, that I just got from the library at the Cleveland Clinic, that I made copies of and included, and I also found a great article by Johns Hopkins Children's Center: Chronic Fatigue Clinic, that talks about NMH and POTS. I don't have the website for it, but the article is called, "General Information Brochure on Orthostatic Intolerance and Its Treatments." It gives some really good info on POTS. I also include a copy of my TTT results so that the doctors here, who aren't familiar with TTT results, can see what a POTS patient actually shows during this test.

Oh, and I give them my contact information so they can talk with a real POTS patient if they would like to.

I've been told by some health care people here that doctors don't like to be shown that you know more than they do. I've lived that, for sure. I just hope they pick up a little bit from these packets so they can start treating POTS patients instead of dismissing them.

Oh, what's great is the article that Dr. Grubb did, that I got from Cleveland Clinic, specifically says, "These patients (POTS) may frequently be misdiagnosed as having panic attacks or chronic anxiety." I highlighted this section to give to the doctors.

Hope this helps.

Linda

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That is wonderful. The medical community needs to learn more about POTS. I explained POTS to a lot of my neurology colleagues at the American Academy of Neurology meeting. Maybe only about 50 percent had heard of it. One of my old friends said, "Oh... I bet I have some patients right now with that problem that need diagnosis" Light bulb! I attended a course which reviewed the major areas of neurology(epilepsy,stroke, etc), and the autonomic nervous system was left out. I spoke with the director and he is very interested in adding this to the curriculum for the annual meeting.

You might want to have your physician provide you with a letter or note stating that your diagnosis is POTS, and carry it with you for the less enlighted ones.

Karyn

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Guest Mary from OH

Linda-

You did it!!! I hope you feel vindicated!! That was an awful to have happened. And I think that your actions will prevent it happening to another patient at that hospital. Good for you!

Now, if every one of us did the same to our local hospitals....... Just think of all the educated people we could have!!!! I think it's a great idea!!! Maybe we should make it a DINET "project"?? In honor of Linda and everyone's ER terror experiences!!!

PS - Could you email me personally. I grew up in Cleveland and would love to know what hospital it was. I currently live in the Columbus area, but I go up to visit our families all the time. Thanks.

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Linda gets docs to ask her for POTS info

Moses parts the Red Sea

Man walk on the moon

B)

You know, before I went to Mayo and got diagnosed I saw a doc who had no clue what was wrong with me and I never did call back to tell him what it was. I'm going to do that.

Jesse

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Oh, Jesse, please don't compare me to a great man like Moses!!! I'm just a tired, irate POTS patient who is fed up with doctors telling me I'm crazy and not helping me!! Moses listened to God, I listened to my aching head! :rolleyes: Anyway, I'm sooo glad you're calling that doctor to let him know what's going on. You will be helping so many patients who come after you, who need a proper diagnosis and help. Maybe if each of us tells at least one doctor about POTS, we'll soon have all of the earth's doctors covered!! Take care.

Linda

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