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Becia

Doctors Referrals... How Did You...

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Get one? Sounds like a dumb question, but yeah. For those who've been fortunate enough to see some of the specialists in this field, and even for those who were fed up with the treatment you were getting and desired to expand our dysautonmia horizons... How did you approach the subject?

My doctor is a great guy... And maybe this is my impatience with POTS talking, but I'm frustrated with everything going on. I'm having a very rough time with the medications he's trying me on, and when I prompt the question of "aren't these bad side effects?", he responds that he's never seen this effect before, I'm fine, and I just need to wait. Well... Okay. I've waited. I know my body, and something ain't right here. Even my roommates will tell you, something is up. That's how I ended up in the er the first time, they literally thought I was dying because I was seizing and more unconscious than conscious.

He's upped my midodrine, and added fludro, I'm pounding fluids and electrolyte solutions and salt like a frat kid at a kegger. And I know a lot of this is waiting, I get that... But it doesn't explain my shaking still. It doesn't help I'm still passing out, further injuring myself. I sit up, stand up, lay down, lightheaded if not out. My heart has decided to start throwing all sorts of stuff at me lately, and I don't do we'll with feeling every beat it decides to misfire.

I just want to know if a different doctor might have a different look on this, or a different thought of treatment. But I'm not sure how to approach this question with him. As it was, it wasn't even him that diagnosed me, it was his collegue that did, but then turned me back over to him because he's the EP cardiologist of the practice.

How did you get a referral? Because my first instinct is to go "dude, you have no clue", but I know that isn't right.

So... How did you do it?

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I 'self-referred' my son to every specialist he has seen. His pediatrician wasn't doing anything, so I researched and would email the doctor that I would want my son to see. Emails go straight to the doctor, so I could bypass the scheduling dept about being rejected because he was too young,etc...I would explain the symptoms, diagnosis,etc.. and the doctors have always emailed me back okaying and agreeing that he should be seen by them for further evaluation or treatment. One scheduler almost didn't let me make the appointment, she finally agreed when I sent her a copy of the email from the doctor. A doctor at the Mayo Clinic also emailed me back and CC'd his scheduler to bump us up as soon as possible. The usual wait to see him was over a year and we got in to see him in 3 months.

So, I have self-referred my son and the pediatrician was happy as long as she got updates from those doctors. I have found emailing to be the easiest route.

Christy

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I use my GP/internist for referrals. I'm only his second POTS patient so he readily admits he knows very little about it and related conditions, and isn't offended when I ask to see a specialist. Some doctors seem to have weird ego issues. Like "oh I know very little about this condition and have only treated it a handful of times, but don't you dare question me or ask to see someone who knows more!" I made that mistake with the cardiologist who diagnosed me - I asked for a referral to Vanderbilt, and he delayed for over 2 months with no clear explanation and refused to release my medical records. I finally had to get them printed by another doctor in his system, it was really bizarre. So yes, you're smart to tread lightly when asking for a referral! I really like christyd's suggestion of self-referral too, I might have to try that in the future.

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My daughter used self-referral for all specialists. If she would have waited to get a referral from her primary care provider, we would still be waiting (because that doctor had never heard of POTS and kept claiming it was just stress and fatigue).

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You may want to ask people on here what docs have helped them in the vicinity that you live. Just an idea. You don't want to start all over with somebody else that really doesn't know how to help.

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I'm in Southeastern Ohio, about four hours from Toledo, 2 hours from Columbus, and 45 minutes from West Virginia, lol. As a person who's formerly from TX, it sounds weird to say give me a couple hours and I can be anywhere.

I just want someone who might have some more answers other than what I've been getting. I think I'm having some reactions to these medications, and that doesn't help diddly squat in trying to get better with anything.

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Guest Hanice

You usually dont need a referral. I just call and say I'm a new patient that wants an appointment.

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I have had more luck with my Neurologist then with my Cardiologist. Most of my symptoms were neuro like and my heart is healthy (have had all the standard testing on it) My neurologist said that it isn't heart disease that is causing your heart to go wonky, your nervous system is telling it to. I think Neurologist have more patience then cardiologists because they deal with a broad variety of patients and even bizarre illnesses.

I think only you know if a medication is working or not. I have learned to listen to My body. Midodrine is short acting so I think you should know pretty soon if it is going to work or not.

When I was first diagnosed with POTS I did ALL the treatments that they told me to do... stockings, fluids, salt etc. After awhile I would take one a way and I found it wasn't really helping me at all. I feel like my POTS is not fluid related for me. Midodrine also did not do anything.

Hope you find a good Doctor, sounds like you are not happy with your current one.

Take care

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Does your insurance require a referral or are you wanting the doc to give you the name of someone else in the field? If you need it for insurance, I would see if my primary care physician would give me the referral after explaining that I want a second opinion. If you just want to find another dysautonomia expert, but don't need physician referrals for insurance, I would actually ask people in this community or other forums you might belong to for names of doctors they have been successful with in your area.

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I've always had to get a referal for specialists, but I've always had insurance, and now I don't.

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Well...that would be the big advantage of no insurance.... no referrals needed. You can just request a copy of all your records and give them to a new doctor of your choice. You could check the physician list on the dinet homepage for doctors in your area or start a thread soliciting suggestions for your area.

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I would suggest that you go see Dr. Grubbs. He normally only sees adults but he was willing to see my 13 year old son. Dr. Grubbs also has a nurse practitioner that will see POTS patients. I would email and explain your situation. By the way, he has a daughter that has POTS. She was about 18 when it happened to her.

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You could also call the Cleveland Clinic. They see a lot of challenging cases, frequently have appointments available on short notice (although there is usually a decent wait for their POTS expert) and I didn't need a referral.

I did get pushback from my cardiologist office for a referral to Vanderbilt some time back (said specialists don't refer to other specialists) so I made an appointment with a general practitioner who gladly wrote a referral for me.

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Did you get any answers Chris? Was it worth going or do you think you could get most of the treatment in seattle?

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I see my cardiologist Friday, and I'm taking the people I live with, in with me, because my brain is so fried, I can't keep things straight. I will look into Cleveland clinic too, hadn't thought of them actually. My prob is just finances right now... I can't hardly afford what I'm going thorough now, more docs makes me nervous, but no answers and nights like lat night make it all worse.

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