Anyone Gone To Vandy Or Mayo Clinic Or Dr. Grubb Without A Referral?

[DSM3KIDZ]

I need another opinion for my POTS/Autonomic Neuropathy. Because I'm not my doctors worse patient I feel she is not giving my treatment plan a real effort. My quality of life ***** and she views me as "normal" since I'm not fainting or puking- at least this is my opinion.

Anyways that being said.............no one else specializes in POTS. Most haven't even heard of it as you all know.

I feel for my quality of life and my families I need to take the next step. Vandy, Mayo or Dr. Grubb?

I don't have a referral to any of these and my egotistical doctor thinks that if she can't help no one can. So I'm sure I would have to pay out of pocket. Can anyone pm me with how much their visit was to any of the above places. I can't afford much but need some hope for improvement.

Since my illness wax and whanes every couple of weeks what if I'm feeling no too bad on a day? That's why I'm scared to make an appointment.

Since I'm hypersensitive to meds I like that Mayo and Vandy do a drug trial or something like that.

Any imput would help me immensley

Dayna

[PattiL]

Hi Dayna,

Chrissy and I just returned from Mayo. We saw Dr. Low before all her testing and then again afterward. She had two pretty full days of testing. She was part of a research study, so there were no costs to us whatsoever. Of course, our flight, hotel, meals, etc. were on us. In fact, they said that if she completed all the test that they would pay her $100.

The week prior going to Mayo we had an appt. with Dr. Grubb and he mentioned that he heard Vanderbilt was also conducting a study.

As far as a referral goes, you could probably call and find out if you definitely need one or not. Dr. Grubb did call Dr. Low for us, but I don't know what their procedure is for this.

If you need phone #'s and any other information for Mayo, PM me and I'll be glad to send them to you.

Patti

[yogini]

Hi Dayna,

I was exactly in your shoes for a very long time. My symptoms seemed to wax and wane. I saw several cardiologists, neurologists, etc. and none of my doctors seemed to take me seriously - in fact they said I should try to go off my meds. Meanwhile, my day to day life was horrible. I barely did anything, except for go back and forth to work and collapse when I got home.

I went to Mayo and I am pretty sure that you need a referral - a doctor needs to submit your paperwork- not only that, but they turn down 80% of the patients that apply there. I was intially rejected, but someone I work with helped me to get an appointment. I saw Dr. Low. I had a bunch of tests, many of which I had already had. I was very glad that I went, because I found him to be very knowledgeable and reassuring. But it did wind up costing me a few thousand dollars out of pocket. Even though I had a referral, it was not covered by insurance. And, in the end, many of the tests were ones I'd had at home and his suggestions were not much different than my local doctors.

My POTS is much better now - after several tries, I am weaning off the last of my medicine. I think what has helped the most is time and gentle exercise. I think if it ever got worse, I would try to see Dr. Grubb. From what I've read, he is the best at giving ongoing care.

-Rita

[MNsue]

I was in the same boat and my Dr. recommended that I go to Mayo. I was declined dispite a lengthy letter and medical records sent by my physician. I guess I didn't know the right people. I went to Mayo two previous times however, they never put me on a tilt table, so they missed the diagnosis. I thought that maybe Mayo would want a chance to make up for their mistakes (and the 15 years I was undiagnosed) and see me, but I guess not. Sorry to sound bitter. But it was a hard pill to swallow.

Good Luck to you. I hope you have better luck than I did.

Rhonda

[Ernie]

I went to both Vandy and Dr Grubb without a referral.

[Eillyre]

Dear Dayna,

Sorry to hear about your doctor trouble!

I saw Dr. Low at Mayo (I asked specifically for him!). He can only see 20% of the patients who need to see him, but I thought it was worth a try anyway. He did have me take another TTT, but the rest of the testing was new to me.

He was wonderful, POTS and CFS diagnoses were confirmed, and the treatment plan Dr. Low put together has worked brilliantly. Going to Mayo was the turning point in my illness. I don't recall how much it cost exactly because insurance covered about 1/3 of the bill -- I can check into it.

I did have to have a doctor's referral to apply for an appointment. The one that my cardio wrote for me was really terrible -- nothing about it would have inspired a doctor at Mayo, let alone Dr. Low, to feel a need or desire to see me (very dry, little medical information, I'm not even sure that she mentioned the posibility of my having POTS). My dad (a doctor himself) took one look at it and said, "There's no way that they're going to let you in with that." So I enclosed my own pleading letter to Dr. Low with the mediocre referral, explaining just how disabling these POTS-like symptoms were. Not theatrical, mind you, but very detailed and honest about my desperation. I don't know how anyone reading the before symptoms/ with symptoms contrast wouldn't be intrigued! At any rate, I don't know how much was my letter and how much was all the prayers I was sending to God, but Dr. Low did see me. If you end up with a pathetic doctor's referral, you might want to try the same tack as I did -- it certainly can't hurt!

Best of luck!

Angela

[dizzygirl]

when i went to dr. grubb my cardiologist called him before hand to talk to him.. and then I actually got in quickly to be seen..(they squeezed me in.. but that was over 3 years ago... he see's alot more patients now)

I've heard of some getting a referral and some not.. you could call dr. grubb's office and ask if you need one..

I'm not sure about vandy and mayo.. good luck to you dear!

[Sunfish]

hi dayna -

sorry to hear about all of the doctor stress frustration. i realize that it's much easier said than done and that you have a lot on your plate, but it sounds like you may need to pursue a different local doc at some point...even someone who doesn't "get" dysautonomia but is willing to learn can be better than someone unwilling to realize when s/he is in over his/her head.

there are two elements to "needing" a referral. one is that some insurances require a referral from the PCP in order to pay...this is usually in an HMO type plan & sounds like it may be the case for you? the other is whether or not the doctor/hospital you're wanting to get into requires a referral. these two (potential) needs for a referral aren't really related to one another.

i've been to vandy & have seen dr. grubb for ten years now. vandy does not require a referral to be a part of research (inpatient) but you do need to send records of some sort. i think it's the same for an outpatient appt with them but i'm not certain about that part. dr. grubb didn't used to require a referral or records but i am pretty certain that they require one or the other now, perhaps both.

at vandy most of my stay was without cost but the first night had to be covered by my insurance (until officially qualifying for the study). i'm not sure what the out of pocket would have been but a night in the hospital isn't cheap. i don't know what an out-of-pocket visit with dr. grubb would be either but probably between $200-400 dollars for an initial visit.

good luck & hang in there,

melissa

[JaneEyre9]

Hi Dayna,

An appointment with Dr. Grubb requires both a referral and medical records. I don't know about Mayo...hope you can find some help. i know it is tough.