Mayo Or Vandy Or Johns?

[RHODEO]

Does anyone have recommendations?

My primary care made a referral for me to go to Mayo and I received a note in the mail saying it has been rejected. Any ideas why they would reject it and any ideas on how I can get them to approve? The lady on the phone said I should have my primary care doc phone Mayo's Neurology Dep and speak w them directly. Does this make sense? I am very disappointed. I need to be seen by someone who has knowledge about POTS.

Thanks for hearing me

Jen

[Ernie]

Hi,

Get in by the back door!

[morgan617]

Jen, I have tried every way, except to just make an appointment and go, but it's such a fight with referrals, it just got where it wasn't worth it to me.

I can't help you, but want you to know you are not the only one, I was in the same place in 2003, and it's disheartening to see not much has changed....many others have had the same response, so my advice is just don't take it personally. Like ernie said, you can get in through the back door, if you are that determined to go. morgan

[Guest tearose]

Jen,

Do take the guidance and have your PCP contact Mayo Neurology!

From what I understand, when our situation is presented directly from our pcp it is given more priority. It is important that we are working with a local doctor since Mayo will diagnose and develop a treatment plan but won't "maintain" our care.

Just a thought from my experience; above all the turmoil this incompletely understood disorder brings, remember two things,

Never give up,

and even when you think things can't get worse and then they do, never give up!

best regards,

tearose

[RHODEO]

Thanks for your responses. I asked my primary doc today if she'd phone Mayo for me like Mayo suggested. She said she feels uneasy about it and said I should see my neurologist and have him call them. She said she'd like to have him do it since he is a neurologist.This is really ridiculous. I asked her if she has ever heard about "POTS" and she said no. Should I see another primary doc? I am very annoyed.

[Guest tearose]

Unfortunately Jen, this is just the beginning of many back and forths you will be doing. Keep being your own advocate! Do not give up!

I think it will be good to have your request come from a neurologist but you could say to your pcp;

"I want to continue to work with you to manage my overall care. Shall I try to get some information on POTS for you?"

The frustration you sense in not personal but can come from the fact that our disorder is something like a "blend" of both cardiological and neurological issues. Sometimes the local neurologist or cardiologist will also have no idea what to do with us! They don't know how to be our advocate so we have to ask them point blank. I have learned from others and my own experience, you must find at least one doctor who can learn how to coordinate your care. If the neurologist is not willing to learn or take your offer to get literature, then go back to your pcp, explain what happened and get a new referral. You must cultivate a good working relationship with one pcp. If the one you have is a dud than yes, find another. I have had my pcp for about 10 years now and I have worked through a lot to get to a good working relationship with him. These pcp's have to invest time and energy to get to understand our disorder and we have to also go and grow through a learning curve. There are times I was so upset with him and I spoke my mind and we moved past many rough times and relapses. I purchased a book for my pcp on dysautonomia, in my early days, and it was helpful! It was hard at times for him too and I had to work through my frustration with him!

Remember, when you come back from Mayo or wherever you go, you will want to have at least one doctor locally to help you. I hope it will at least be your pcp.

Hang in there,

tearose

[RHODEO]

So my pcp had me see Neurologist here in VT.

I did today. I again feel so disappointed

He made me feel like I am overreacting to my symptoms and said everyone can feel like they have Autonomic problems if they think about it. He thinks its one big joke. He thinks people who complain about Autonomic problems are dramatic. How can he say this? This is not in my head. I begged him to send me to Mayo since I have not had Autonomic tsting. He said I should have my pcp take care of it. I said she is relying on YOU to do it and he said he'd refer me to MT Sinai. He said they are more highly regarded. Anyone hear anything about it? How about anywhere in Boston? I am desperate. I am sorry to complain on here, BUT I feel so lonely and sick and I am not sure how to handle it and how to help myself.

Thanks again.

[Aquadiva]

Jen, I sent you a message.

[wireless]

***** about the neuro's attitude. POTS patients are often misdiagnosed as just having anxiety. I hope you can find a decent doc to get referred, maybe find a good dys doc who doesn't need referral.

[Guest tearose]

Feel free to PM me for more information.

If you must do NY area, go to Columbia Presbyterian in NYC or Greenwich Hospital in Greenwich, CT.

tearose

[RHODEO]

This is interesting. I checked MT Sinai's website and they don't even have anything indicating they treat Autonomic problems. Am I missing something?

[dsdmom]

Jen,

Check your other topic about options in Boston.