New To Dinet, Looking For Specialist

[Mariewl28]

Hi all!

I'm new to the forums, though I was diagnosed with POTS in Oct. 2014. After years of unexplained syncope and other neurological symptoms, I went to Cleveland Clinic where I have been seen by a General Neurologist. He has been very compassionate and helpful with diagnosis, but I have been on Midodrine since Dec. and Florinef for years, with no improvement. I like my Neurologist there, but he is somewhat unresponsive, and seems to have no thoughts going forward on treatment.

I just had a sleep study done, and found I have central sleep apnea, and was throwing PVCs in my sleep. I also have urinary problems, and my symptoms appear to be progressing more rapidly. I am concerned because I also have glaucomatous changes in both eyes, apparently from my low blood pressure while sleeping. I have mentioned all of this to my current neurologist, who acknowledges the problems but does not inform me as to what they could mean.

I'm thinking about finding a specialist in Autonomic Dysfunction, but I am having trouble finding a center that treats POTS that is already diagnosed. The places I have found do clinical trials, but I do not react well to new medications and treatments, and am already on a lot of medications. I am looking for a treatment center toward the East Coast, but any suggestions would be welcome.

[corina]

Hi Mariewl28, welcome to DINET! I'm not 100% sure as I'm not in your country but I thought that Cleveland Clinic has an Autonomic Lab and specialists. Have you asked to be seen by one of them?

[SarahA33]

Hello, there Mariewl28! Welcome, to DINET! Its unfortunate to have read about all that you struggle with, I'm sorry that you've gone through so much.

I've included a link below, its DINETs physician locator.. you can search for a doctor who treats specific conditions or you may enter by location. It's a very useful resource! http://www.dinet.org/index.php/physician-list

I just had another idea for youi. Dr. Svetlana Blitshteyn, who is an Autonomic Specialist who trained at the Mayo Clinic..has a neurology practice in Buffalo, NY, however, for out of town patients she does phone and Skype Consultations. http://www.drblitshteyn.com/ That may be something to further look into?

Best of luck to you, please let me know If you have any questions.

Sarah

[SarahA33]

I just saw Corina's post.. the Clinic does have a few other specialist's in dysautonomia, have you thought of switching? I'm a patient there, I see a neurologist there. My experience between electrophysiology and neurology has been extremely positive.

[gjensen]

Some speak well of Vanderbilt. I would not know who to suggest on the East Coast. I have been to a few, but did not make any progress.

[Katybug]

Well, everyone beat me to the punch in getting you to the physicians list. I'm in Baltimore, so I could give you my neurologist's name if that's close to you. He's and autonomic and headache specialist.

Also, I recently found out from my immunologist, that steroids can cause glaucoma and cataracts as well as other vision changes when taken long term, so be sure to mention the long term use of florinef to whoever is managing your eye issues. I am currently waiting for an appointment with the opthamalogist ad the immunologist said I need to have my eyes checked a minimum of 1x per year if I have to continue on steroids.

Welcome to our community. I hope you find this to be a great resource and support network.

Take care,

Katie

[Mariewl28]

Thank you all for your advice!

I have been researching (an obsessive tendency of mine) for a syncope/autonomic dysfunction center. I think my problem at this point is that I have co-morbidities and diagnoses that I can't find one doctor that specializes in everything. Cardiology, Neuro, Rheumatology (I have hyper-mobility), and Opthalmology.

I regards to Cleveland Clinic, I'm not sure how to approach changing doctors after establishing a relationship with my current Neuro there. I'm somewhat reluctant to stay there while he is part of that group- I'm not very good with conflict- even a mild one.

I have also been looking at Vanderbilt. However, due to my long list of medications and reactions to new ones, I don't think I'll be eligible for any clinical trials. Since I already have a diagnosis, I'm not sure I'll fit the clinic either. I'm going to call them on Tues. to see what they think.

KatyBug-thanks for the info on steroids. I'll let my Ophthalmologist know, and see what she says.

In my research, I came across Beth Israel Deaconess at Harvard, and I have already been rejected at Mayo twice. I'm not attempting that again unless I have a good reason. Brigham and Women's maybe? Stanford (I know I said east coast, but I'm just wondering). Any thoughts?

[JenLR]

If you are willing to travel to Toledo, then Dr. Blair Grubb might be a good option for you. I live in Arkansas and fly to see him once a year. He's very experienced in working with hyper-mobile patients. It takes a while to get an appointment as a new patient, but I'm sure you could get in relatively soon with his NP, Bev Karabin. She's great as well.

[SarahA33]

I jut re-read your initial post, at the clinic do you still see a general neurologist there or were you referred to a POTS neuro? I missed "general" the first time--sorry,!