Hi! I Need Help!

[ajw4790]

Hi all!

I have like 5-7 drs. currently. I am sure you are all familiar with the all too popular, oh it isn't a .... specialty issue, and they pass you off to the other drs. So, this has been kind of what is happening. Today my one main source of help so far just decided to bail on me. He doesn't know what to do or have any answers for me, so he has decided he can't really help me, because I am not a straightforward case. I do not follow any "typical" presentation of what he treats. So, therefore he really has decided to more or less not treat me anymore. I mean I understand him not knowing, but to just bail, and not look outside the box etc... It is frustrating. He will refer me though to another specialist if I present him with a name. I do understand where he is coming from, but this does not leave me in a good place.

So, does anyone have suggestions for (preferably close to Ohio) neurologists that look outside the box, and are familar with patients like us? I really do need to find someone. I am desperate... I have an atypical small fiber neuropathy presentation (patchy-not glove and stocking pattern), POTS, EDS III, RLS, IBS, ADHD, and essential tremor. I also have a history of childhood epilepsy. There IS neurological involvement, but they can not figure it out. The fatigue, cognitive involvement (memory, processing, cognition etc.), and extreme heat intolerance are my biggest symptoms. My tremor has also gotten worse...

Also, if anyone know of a dr that works long distance and is willing to take patients (to like guide another dr. etc) that would also be great!

Any recommendations will be HIGHLY appreciated!!!! Thanks!!!!

[bamagirl]

The only one I know of in OH is Dr. Blair Grubb. He is an Electrophysiologist (heart rhythm doc). I hope this helps.

Edited November 6, 2008 by flop
Quotation removed, please use the "add reply" button at the bottom of the page

[MightyMouse]

This is copied and pasted from the Ohio section of DINET's physician's list on the main page.

Ohio

Dr. Blair Grubb

Medical University of Ohio

3000 Arlington Avenue

Toledo, Ohio 43614

419-383-3925

Will treat children

Comments submitted by a patient:

I just wanted to say that Dr. Blair Grubb, MD in Ohio is the most informed and kindest doctor I've ever encountered in my lifetime. He always takes the time to listen intently to you and always tries to give you new ideas and new things to help you even if nothing has worked in the past. He doesn't give up on you. He is very knowledgeable and skilled . His clinics often run behind schedule because he takes time with each and every one of his patients. He cares so much about each one of us. He once sent me the book "When Bad Things Happen to Good People". It was after my first visit to see him, and I didn't even know that he'd remember who I was. He is the best and nicest, kindest, smartest doctor ever and he knows an awful lot about dysautonamia and NCS and POTS. He's written many articles and journals and books. Thank you for letting me tell you about Dr. Grubb.

****

He is an EXTRAORDINARY physician-- the brilliant, yet compassionate, doctor everyone wants. My 24-year-old daughter visited every cardiologist and electrophysiologist in our Colorado metro area. She tried every treatment and medication imaginable over a period of 8 years. There seemed to be no help for her. Though those doctors were also good, reputable physicians, in the end we were referred to Dr. Grubb. My daughter is now getting her life back on the treatment he prescribed on her very first visit. We think Dr. Grubb walks on water!

Ohio State University Medical Center

Autonomic Reflex Laboratory

Neurology Outpatient Clinic- EMG Laboratories, 1C

456 West Tenth Ave

Ohio State University Medical Center

Columbus, Ohio 43210

(614) 293-6767

Autonomic Laboratory

Treats adults

Dr. Thomas Chelimsky

University Hospitals of Cleveland

11100 Euclid Ave.

Cleveland, OH 44106

216-844-3495

Autonomic Laboratory

Will treat children 12 years and older

Dr. Gerald E. Grossman

University Hospitals of Cleveland

Department of Neurology

11100 Euclid Avenue

Cleveland, OH 44106-5040

216-844-8925

Autonomic Laboratory

Comments submitted by a patient:

I went to Dr. Grossman for my diagnosis and my treatment. He is very good at treating this disease, and he also listens to what you have to say. He answers all your questions. I never felt like he was pushing me through the appointment. Very smart.

Dr. Barry DeRan

5705 Monclova Rd.

Suite 204

Maumee, OH 43537

419-897-7611

POTS, NCS

Treats adults

Dr. Fetnat Fouad-Tarazi

Head Syncope Clinic, Dept. of Cardiovascular Medicine (F15)

Cleveland Clinic

9500 Euclid Avenue, Cleveland, OH 44195

216-444-5828

POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Other Autonomic Disorders

Autonomic Laboratory

Will treat children

David O. Martin, MD, MPH

Cleveland Clinic, 9500 Euclid Ave/F15

Cleveland, OH 44195

216-445-4128

Dr. Martin is a cardiac electrophysiologist at a major tertiary care referral center and sees a number of patients with POTS/dysautonomia who have been previously misdiagnosed or non-diagnosed ("it's in your head").

[ajw4790]

Thanks, I probably should have specified I already see Dr. Grubb's NP Bev (haven't seen him yet) and one of the other on the list is the practice of drs that I just "outgrew". Also, many on the list are cardiologists, I am more interested in neurologists. I think there is one or two that fit the profile, and I will likely look into, but I was curious of anyones personal experience, that might not be listed on the website. Or that the listed drs are good with dealing with these kinds of "puzzles".

Thanks for all your input!

[Sunfish]

hi there -

sorry for your doctor frustrations. many of us have had our fair share in one way or another so can definitely empathize. not fun at all. just briefly, one neuro in ohio who i have had good experiences with is Dr. Robert Shields. he is actually the director of the Autonomic Function Lab at Cleveland Clinic & i'm not sure why he's not on our list (it could be for a variety of reasons, none of which necessarily have anything to do with one's doctoring) i've written about my experiences with him several times, as have a few others, so you might want to do a search. if you can't find past posts let me know & i'll chime in a bit more.

to be honest i can't guarantee that he's exactly what you're looking for b/c my needs/ situation was a bit different when i saw him. i had nothing but a good experience with him but obviously can't speak to how he would deal with your situation. based on my experience(s) with him i wouldn't rule him out though.

hope this helps,

melissa

[Maxine]

Dr. Robert Shields' address/information

http://my.clevelandclinic.org/staff_direct.../Staff_505.aspx

I'm looking for a good neurologist also, but not necessarily related to my ANS issues only. I also have other neuro problems related to my spine instability and EDs.

Maxine :0)

[PattiL]

We're with Melissa on this one. Dr. Robert Shields at the CCF is wonderful. In fact, since Dr. Grubb hasn't been so available lately, we've been seeing Dr. Shields every three months. He'll take his time with you (similar to Dr. Grubb) and is very knowledgeable and understanding. Hopefully you won't have to wait too long to see him.

Patti