Dysautnomia speciality clinics in the US

[hopeful-girl]

Hello. I have ac ouple quesyions or justy maybe one LOL Sorry I am having abd day and I am on overload and am on a piutty pot today. But it gets me thinking at times!

1. What are names of Speicality clinics out there that deal with ANS?

This is what I have come up with.

a. Vanderbilt university

b. Mayo Rochester Minnesota

c. Cleveland, Ohio (dr. Grubb)

I have got my insurance to approve of me going to the Mayo Clinic in Rochester. But the Clinic says it could take up to a year to be seen.

Can any one give me other information. Such as other clinics, Dr's names, phone numbers and locations etc.......

I am thinking I would like to try to find a place I can get in sooner than later.

Any information would be very much appreciated.

Thanks for being here

Corina (hopeful-girl)

[AJVDK]

Hello, Sorry to here that it could take so long to get in. Is there a way you could get a referal to get in sooner? I wish you the best of luck.

[wareagle]

OOps..posted twice!

[wareagle]

Hi Corina..just wanted to add a couple to Stephs list. There's also the Mayo Clinic in Jacksonville,FL. Like Steph. said..Mayo's a good place to get all the testing done...I actually didn't have a very good experience with one of their "specialists" in Jacksonville BUT..every other doctor and other professional I saw was wonderful.

I do believe there's some kind of center in Birmingham, AL..think it's the MVP clinic? I think someone's mentioned it before.

I also think there's some type of clinic in TX..okay..guess I'm not too much help here!! If you haven't already..look at DINET's physician list..some of these docs. are part of autonomic clinics!

I hope you find some relief soon!!

[MightyMouse]

Corina, just in case you haven't looked, there is a list of physician's on the primary DINET site

http://www.dinet.org/physicians.htm

[LisaColumbus]

I have also been to the Ohio State University autonomic lab, In Columbus, which is in  CENTRAL OHIO--through their department of neurology, again, they can do the basic tests, but in the end they sent me to Mayo, MN. Also I have more than just POTS that needed tested at the time, so everyone, including Dr. Grubb, felt a Mayo work-up would be best.

<{POST_SNAPBACK}>

Hi Steph, I live in Columbus and have been debating whether I should try the OSU Autonomic Lab. I have had 2 tilt table test and the blood volume already done. I was dx'd w/ severe POTS, moderate hypovolemia, NCS, MVP, Hyperkinetic Heart (whatever that means), CFS and IBS. Does OSU just do the general testing, were there any docs there worth seeing? I am currently a patient of Dr Grubb and have also been to Cleveland Clinic. Do you think I could benefit at all from OSU or would it just be a waste of money and time?

[Miriam Poorman-Knox]

Actually if your doctor sends your records and a letter to Dr. Low personally, you will get seen much sooner. I was offerred an appointment 6weeks from time he received records. My ins. however couldn't get it together for another 4 mos. Also regarding follow up. I received business cards from all Docs seen. My PCP has them all and reguarly discussed issues with her. Good Luck. Miriam

[Lukkychrm42]

Hi!

I went to Vandy, personally, but regarding the Mayo Clinic- I heard that it was normal procedure to just show up and expect to be admitted within a few days. That's what their website says, anyway. Anyone able to elaborate on this?

[Sunfish]

i hate to rain on the parade, and you may still want to look into it yourself, but when i called about the autonomic rehab program this past spring (when i was considering going to school at OSU), i was told the program was no longer in existance b/c the person running it left. i spoke with three people who told me this, and who said the website just hadn't been update.

bummer, eh? i'd thought it sounded really good...

melissa

[gelann]

Hello. I have ac ouple quesyions or justy maybe one LOL Sorry I am having abd day and I am on overload and am on a piutty pot today. But it gets me thinking at times!

1. What are names of Speicality clinics out there that deal with ANS?

This is what I have come up with.

a. Vanderbilt university

b. Mayo Rochester Minnesota

c. Cleveland, Ohio (dr. Grubb)

I have got my insurance to approve of me going to the Mayo Clinic in Rochester. But the Clinic says it could take up to a year to be seen.

Can any one give me other information. Such as other clinics, Dr's names, phone numbers and locations etc.......

I am thinking I would like to try to find a place I can get in sooner than later.

Any information would be very much appreciated.

Thanks for being here

Corina (hopeful-girl)

<{POST_SNAPBACK}>

I recently read that there is an autonomic lab at the University of Michigan.

[momdi]

I would echo Miriam. My son just got an appointment with Dr. Low for Jan 16th following a referral by his diagnosing electrophysiologist.

To Lukkycharm - I think that you can self-refer to Mayo and you'll be given a primary care doc who shepards you through the system. But if you want to see Dr. Low, you do need a medical referral. If you don't have one, then you have to start with one of their primary care docs.

I have a question. They told us to prepare for 3 to 7 days of testing at Mayo. That's quite a range. What has been your experience there?

thanks,

dianne

[Guest Belinda]

Hi there. There is also a DR.CHelimsky at University Hospitals in Cleveland he also has patrners that are very interested in working with Dysautonomia. I asked and as long as you already have tests done the first available appt. are soon after the first of the year. HE can also keep in touch with your PCP in your treatment course.

[Miriam Poorman-Knox]

Diane,

I spent 2 weeks there. It depends upon tests that you need to prepare for, and how many other specialists they weave you in with. Miriam

[Jacquie802]

Hi, I have seen doctors from both Boston Medical Center and Beth Israel Deaconess Medical Center. Both have great doctors there. I am currently seeing Dr. Gibbons and Dr. Freeman @ Beth Israel. Dr. Freeman takes about 7 months to get into. Hope you find a great doctor!

[gwen]

What do you have to do to get into Mayo?? I feel like a total reject. My Dr. sent my file (a novel) and requested a referrel for me. They sent me a form lettersaying it would not be possible at this time. I called and asked when would it be possible please and they said they did not make appointment for over a year!! My Dr. was just irate. There is no one in St. Louis that I know of that is working on this. While I am not as severe as many of you I read, I am getting worse. I would like to see someone before a crisis. I am now considering Dr. Grubb but he is 6mo. out? What does a person do? I am doing everything now, could this be why Mayo wouldn't see me? gracie78

[Lauren12]

I just got back from the Mayo Clinic in Rochester. All we had to do to schedule an appointment was call. We called in Later August/September I believe? And my appointment was about 2 weeks ago. So, all you should have to do is call and explain your problem, and they'll work you in. Also, it says that you can just show up at the Clinic and they'll work you in within a few days.

I would reccomend the trip. After lots of wrong diagnoses here in Atlanta, we finally got an accurate one at Mayo. They are so thourough-- it was overall a very good experince and I would reccomend going to anyone who hasn't gotten the answers they need medically.

If you have the time and the means to go to Mayo and just wait for a cancellation (and their are a lot of cancellations) I would go for it. I can't imagine them not being helpful. If you don't want to do that, Call the Mayo Clinics in Arizona & Florida to see if they can get you in any sooner. Good luck!!

[yikespanic]

Hi,

http://www.clevelandclinic.org/staff/getst...asp?StaffId=637

Cleveland Clinic Foundaton-Main Campus

Fetnat Fouad-Tarazi, M.D.

Phone: (216) 444-5828

Mail Code: F15

appointed: 1979

medical school: University of Cairo Faculty of Medicine Cairo,

specialty training: Fellowship - The Cleveland Clinic Foundation Cleveland OH

Internship - Cairo University Hospital Cairo Egypt

Residency - Cairo University Hospital Cairo Egypt

other education:

specialty interests: cardiovascular disease, syncope, hypertension

This is the Dr. who ran all my testing and made diagnosis, she is very compassionate and is a very good listener! She mainly does testing and will continue to see you untill you find a Dr. for continued care. She trained a MD I believe his name is Watar? I will check on spelling and post again, he is in Westlake I believe.

Kim

Hello. I have ac ouple quesyions or justy maybe one LOL Sorry I am having abd day and I am on overload and am on a piutty pot today. But it gets me thinking at times!

1. What are names of Speicality clinics out there that deal with ANS?

This is what I have come up with.

a. Vanderbilt university

b. Mayo Rochester Minnesota

c. Cleveland, Ohio (dr. Grubb)

I have got my insurance to approve of me going to the Mayo Clinic in Rochester. But the Clinic says it could take up to a year to be seen.

Can any one give me other information. Such as other clinics, Dr's names, phone numbers and locations etc.......

I am thinking I would like to try to find a place I can get in sooner than later.

Any information would be very much appreciated.

Thanks for being here

Corina (hopeful-girl)

[gwen]

Lauren, what dr. did you see and what phone number did you call? I 'm afraid to just show up and then not be seen. I'm willing to do anything at this point.:-)

[Lauren12]

Lauren, what dr. did you see and what phone number did you call? I 'm afraid to just show up and then not be seen. I'm willing to do anything at this point.:-)

Hey Gracie! I'm actually underage (17) so all my stuff was handled in the pediatric department. Dr. Kumar an endocrinologist & Dr. Murali a Neurologist. When making my appointment we called the apointment office, (507) 284 2111.

I just don't understand why your having such a hard time! What number have you called? I think that if you just showed up, they wouldn't NOT see you it just might be a week or two? Which really isn't that fun.

[momdi]

Hey Gracie,

See my earlier message on this same topic. I think your difficulty in getting into Mayo is in trying to get into Dr. Low's clinic specifically. When I spoke with his appointment secretary, she made it clear that while anyone can self-refer to Mayo, to see Dr. Low specifically (and perhaps other doctors as well - I don't know), you need a referral from your doctor. She said that Dr. Low would review the referral and then call us to let us know if and when we would be seen. I don't know why we were selected and others are rejected.

I've read another post that complained that when they went with a Mayo internist, and tried to get them to refer to Dr. Low for his work up, that the Mayo internist refused to make the referral.

I don't have any experience in this, but from the website, it's my understanding that you can self refer to Mayo in general either by phone or through the website. This seems preferable to simply showing up and spending day after day waiting in the clinic to be seen by someone.

Good luck!

Dianne (Mike's mom)

[Poohbear]

If you want to go to the Mayo Clinic and you are having trouble getting in with Neurology then you may want to try and see if you can get an appt scheduled with Dr. Win-Kuang Shen in Cardiology.

He is very familiar with POTS and was a HUGE help to me when I went.

Just another avenue to try.

[gwen]

well I called at first and they said I had to be referred by my dr. and chart sent up. We did that and then got the form letter. My Dr tried to get the Dr to Dr conference call but they wouldn't. She thinks they wouldn't see us because I'm already doing all that can be done and she may be right, but there is still in my mind that someone might have a trick or two we dont know. I know I won't be cured. Going to Mayo would make some in the family and community realize I'm not just making this up. Avery expensive way in dollars and energy. Good insurance, no problem there. I just don't know. Sometimes I feel like i'm just thinking about it too much and I should just roll up into a ball.How do you do this with kidsand a husband? I have a lot of friends but they seem to have floated to the background because I can't just pick up and go play reindeer games. They are good people but sometimes I think having a broken bone with blood spurting out would make the doctors, family, and friends relate to all this easier.Thanks:-)

[HoldOnToHope]

Diane, my daughter spent Sun-Thursday at Mayo, saw lots of great docs and had a number of tests done very efficiently. I was very, very impressed with the care we got. My daughter saw Dr. Fischer in the Pediatric Diagnostic and Referral area. How old is your child? I thought Dr. Low only saw adults. I've heard great things about him, too. Best of luck to you!!

[momdi]

Thanks WI mom,

We were actually referred to Mayo by Mike's old EP from Chicago Childrens who is now at Wisconsin Children's. Dr. Janette Strasburger is way up north (sorry, don't know the exact town) but she comes to Milwaukee Children's once a week on Thursdays. We don't have a lot of experience with her - she first diagnosed Mike in Chicago in 1999 with a TTT. We tracked her down and tried to see her this same time last year, but she got stuck in the snow storm and couldn't make it. She arranged for Mike to see her colleague, who was very nice, but it's not the same. Anyway, she was kind enough, even with so little current info on Mike, to make the referral to Dr. Low. If you need a pediatric EP who knows POTS you might want to check her out.

Mike is 23 now and lives in Phoenix - we live north of Chicago. He's had symptoms since he was 8 years old (in retrospect, maybe before), and was successively misdiagnosed at Chicago major medical centers with tachycardia (partly true!), seizure disorder, and ADD.

As you know, it's so tough to see your kids sick. I'm a nurse, so add that guilt onto the usual Mom guilt.

Thanks for caring,

Dianne (Mike's mom)

[shannon]

Hi Corina,

I'm pretty sure Mayo Clinic would see you ASAP if you contacted Dr. Low's desk in neurology. When my local doctor called mayo for a referral, I had an appt with Dr. Low within a couple of weeks. Give it a try ---- Dr. Low is great!!

Good luck and take care!