Anyone Have A Doctor Recommendation

[houswoea]

My St. Paul Heart Clinic guy is nice, and he has tried to help me every time I have cried in front of him. He just doesn't know what he's doing with POTS, which is okay. But I need someone who does.

I looked on the physician list and saw there were a few options. So I was wondering if anyone has seen any of them? Should I trek out to Mayo Clinic? Or will the U of M hospital suffice?

Thanks for any input! I appreciate the help SO MUCH!

Elizabeth

[potsgirl]

I have always had good luck at the Mayo Clinic in Rochester. I see Dr. Goodman, but there are certainly other good docs in their subspecialty group for ANS/dysautonomia - I think some are listed on the home page of this site.

[momdi]

Hi Potsgirl,

From your friend up the road in Phoenix....

Are you still seeing Dr. Goodman? How does that work out? When we were told he was leaving, there sure was no offer for follow up - just told to go back to Mike's primary - or to see Dr. Srivasthan in cardio.

To Elizabeth,

We very much liked Dr. Goodman - he sure takes his time and seems to be working on being a POTS specialist. Having said that, the meds that he had Mike on were not helpful - and since Goodman left, Mike is now seeing a less helpful EP, but who has changed his meds for the better.

Can you get a local cardiologist and maybe see Goodman once a year? I'm starting to think that the combo of cardio and neuro is perhaps necessary.

How nice to have the option of Mayo right down the road.

Good luck,

Dianne

[houswoea]

Thanks! I do have an electrophysiologist, but he told me that he couldn't help me anymore than he has and that I should go to a pain clinic and figure out a way to manage the rest, or go back to my primary doctor. She think I'm crazy and sent my to a psychologist, so I don't really like that option. I'm not quite ready to give up yet!

It sounds like the Mayo clinic in Rochester is where it's at... hopefully I can get an appointment, they are pretty dang busy!

[potsgirl]

Have your doctor make the referral for you to Mayo, and then it'll probably only be a 2 month or so wait....I think your insurance would require that anyway.

Hi Momdi: I had just started seeing Dr. Goodman in Phoenix when he moved, so I followed him and did all of my testing in Rochester instead. I'm seeing a cardio/neuro/internist here in Tucson who seem to have a pretty good handle on things, but may well go back to Goodman as necessary. I have family in Iowa, which helps. I definitely think a cardio and neuro are necessary, too!

[Aquadiva]

Thanks! I do have an electrophysiologist, but he told me that he couldn't help me anymore than he has and that I should go to a pain clinic and figure out a way to manage the rest, or go back to my primary doctor. She think I'm crazy and sent my to a psychologist, so I don't really like that option. I'm not quite ready to give up yet!

It sounds like the Mayo clinic in Rochester is where it's at... hopefully I can get an appointment, they are pretty dang busy!

I sent you a message about who we see at Mayo.

[ken870]

Thanks! I do have an electrophysiologist, but he told me that he couldn't help me anymore than he has and that I should go to a pain clinic and figure out a way to manage the rest, or go back to my primary doctor. She think I'm crazy and sent my to a psychologist, so I don't really like that option. I'm not quite ready to give up yet!

It sounds like the Mayo clinic in Rochester is where it's at... hopefully I can get an appointment, they are pretty dang busy!

I sent you a message about who we see at Mayo.

i know mayo is busy i have been on their waiting list since feburary and i called them yesterday and they told me it still could be as late as august or september before i get an appointment.

[potsgirl]

Ken,

Did you have a doctor's referral? That should speed things up significantly....Also, they tend to not be as busy in the colder months, as it get very cold there. They have an underground network with some of the hotels, though, that connect you to the main clinic, so chances are you won't ever have to step outside if you don't want to!

[ken870]

Ken,

Did you have a doctor's referral? That should speed things up significantly....Also, they tend to not be as busy in the colder months, as it get very cold there. They have an underground network with some of the hotels, though, that connect you to the main clinic, so chances are you won't ever have to step outside if you don't want to!

yes i had a referral they accepted my doctors referral way back in feburary but i am still on the waiting list because they tell me they are booked up with patients so now that theycouldnt give me an appointment but if i needed to see them i could have my doctor call and tell them that i need to be seen soon and the doctor would look at my records and decide if i could be bumped up to see them.

[jamernay]

Ken,

Did you have a doctor's referral? That should speed things up significantly....Also, they tend to not be as busy in the colder months, as it get very cold there. They have an underground network with some of the hotels, though, that connect you to the main clinic, so chances are you won't ever have to step outside if you don't want to!

yes i had a referral they accepted my doctors referral way back in feburary but i am still on the waiting list because they tell me they are booked up with patients so now that theycouldnt give me an appointment but if i needed to see them i could have my doctor call and tell them that i need to be seen soon and the doctor would look at my records and decide if i could be bumped up to see them.

I just started the process with the doc referral thing at Mayo. It certainly doesn't sound promising that I can get an appt any time soon! So sorry your wait has been so long.

Jamie

[Aquadiva]

When you call, who are you talking to, the appointment people? I would keep calling and maybe even ask to talk to the dr.'s secretary.

Also, I would ask about being a "checker" if you are desperate and have some time to kill. What that means is that you go to the floor and wait for either an opening/cancellation or to be "worked in". It can take a few days, but if you are there and willing to wait, someone will see you. They can't guarantee how long it will take, but it may be worth it. I know other areas take "checkers", I would assume they would also. Something to look into. My mother-in-law did this a few years back in ophthalmology and was there registered and seen by 11 am! She was told there were no appointments also.

Have you tried to get an appointment with Dr. Grubb? I know that is a long wait as well (as my daughter is also on that list), but if you are on a wait list, maybe being on two will get you in to see someone new faster.

Good luck!

[Jan]

The problem with the Mayo, is they won't act as a primary Dr. They will consult and make recommendations, but you need a doctor in town to prescribe and monitor.

I had a difficult time after visiting the Mayo having them contact my doctor at all. My doctor finally called them and they gave him very little direction.

I see a doctor of Internal Medicine in Stillwater, MN. I am his only POTS patient. He has read up on it and when ever I see anything that I want to try, he reads about it.

One time my doctor said "This must be really difficult for you, I wish there was more I could do." He has been my very favorite doctor since.

One specialist at the Mayo clinic said, "You will get better in 2-5 years", like that was good news and seemed incredibly unsympathetic to the fact that my life as I had known it was gone forever. Oh, and by "better" they mean not bed bound, but certainly not cured or close to it.

My advice it to try different doctors in town until you find one you trust. One who believes you.

[houswoea]

Well... we're trying really hard to get an appointment with somebody, but it's not looking like it will be in the near future. Ay-yi-yi. Any suggestions to make things go faster? Should I just try to get in with any random doctor? Maybe then it would be easier to see a specialist, if I am already involved with the clinic? Tried dr. referrals, tried using my father's pull with the cardiology department... nothing's working!

[Jan]

I have heard of people who just show up at the Mayo as a walk in, and wait for an opening. It can take a day or more of waiting but I have heard that it works. Waiting in a hard chair is difficult for most of us so I don't know how appealing this idea is. You could call the Mayo and ask them how it works to go without an appointment.

I know when I was there, I wanted to leave in less than a week. So when I had time, I went to the places I was scheduled for my Friday tests, and signed in and waited until they had time. Then I went to my Thursday appointments and signed in to wait. Everyone of them told me they couldn't promise I would get in but I got in every time. I was able to leave on Thursday AM after seeing my primary Dr., who I had to sit and wait for since I wasn't scheduled to see him until late Friday of the week.

You have to get a primary Dr. to order the tests first.

Has anyone here ever tried to go to a Mayo Clinic without an appointment?

[Tammy]

Is there by chance you might have a sleep disorder as part of your POTS symptoms? I ask this because I know an excellent sleep doctor in St. Cloud that had been a neurologist for many years and he had worked at the Mayo Clinic in neurology and saw POTS patients. If there would be away to get in to see him in a round about way, to discuss a sleep disorder, such as insomnia, which is common for those of us with POTS, he also will adress and give helpful ideas on how to treat POTS symptoms also. If you want his name, let me know. This is how my doctor got me into see him and he really did understand my symptoms better than anyone I've ever met.

[houswoea]

yeah, that'd be great! I have an appointment at mayo in september, haha, but I'm willing to do anything! I do have a sleep problem, I have narcolepsy. Thanks so much for your help!

[collies1974]

I too am on the WAITING LIST for Mayo!! I call every week and they tell me that it looks like Oct-Nov, if that! I got on the list in April... I also applied to be a research candidate at Vanderbilt, but they also have a waiting list. What is this "Checker" status all about? Do you goto a specific pots dr's office? Where do you go?

Good luck and don't lose hope, even though we all do, at some point. I have a great cardiologist in San Diego, who has 23 POTS patients, if you can travel and want great weather for a week, let me know, I'll get you an appt with him (I worked with him for years). The reason I want to go to Mayo, is for more thorough testing and a cause of my POTS. My dr is great with medications and hr control, and emails me back/forth so I don't have to get myself in to see him.

Thanks for the help.

[houswoea]

I too am on the WAITING LIST for Mayo!! I call every week and they tell me that it looks like Oct-Nov, if that! I got on the list in April... I also applied to be a research candidate at Vanderbilt, but they also have a waiting list. What is this "Checker" status all about? Do you goto a specific pots dr's office? Where do you go?

I found the way to get in to see someone was just to cry and sound desperate. They got me in, it's later than I'd want, september 8th, but I'm not on a waiting list, at least! Plus I just called them up like a week or two ago. Just keep calling until they get you in I don't know what "checker" is either! And I, as of now, go to the st. paul heart clinic.