Does Dr Grubb try innovative methods of treatment?

[Evie]

Hi everyone

Because it looks like i will be comming to the states next year i thought if i have not fully recoverd by then i may as well see the top docs while im over there. However i dont want to waste their time. I am under one of the best neurologists in Australia and a wonderful endocrinologist who really fights for my case (i dont officially fall under her yet she still treats me even though her waiting list is 4 months long). I can handle part time study and occasional exercise these days. This is such a huge improvement on previous years. If i start to go backward my drs said there are ranges of treatments to go by (and they have given me lots to read by dr grub and dr ho i think it was)... so they are in touch with these drs research.

My main question was do these drs try 'new' things that my drs may not be aware of yet? Or do you all basically get similar treatments just slightly varied to your personal responses?

Have anyone of you been on the road to recovery then gone to these drs and they have helped you yet again? or is it the case that most people go to them at thier worst as they are the best and then they recover ?(hopefully)

From the sounds of it i will have to book way in advance so i just need to work out if its worth it or not.

sorry also who has helped you the most? is it dr grubb or are there other drs you would recommend? .... i was previously under the banner of CFS so if anyone knows any super drs who know about both OI/NCS and CFS please let me know

[Ernie]

Hi,

I would say Dr Grubb and Dr Robertson are the most innovative with the medical trial.

[MightyMouse]

I would have to agree with Ernie. No miracles for me, but I did get the opportunity to try some of the best meds out there before my local docs had even heard of using them. If you can't get here, I know he's been good about coaching interested docs through working with POTS or other dysautonomia patients. Just a thought--certainly, seeing him personally is good too, but I know that's not a realistic option for many, many people.

Nina

[Evie]

Thanks for the responses! where is Dr Robinson stationed? Dr Grubb is in Ohio is that correct?

Yeh. I suppose if i did stop improving or got worse my drs could try other meds. Its always nice to dream that there is some dr out there who has special capacity to understand my body and help me fix it or see something that other drs have missed! (yeh keep dreaming lol).

However if he has info before the other docs it may be worth it (or be a guinea pig in a triall).

Does Dr grubb treat CFS Symptoms too?

My drs think my CFS was caused by OI ... i hope they are right ... yet there seems to be so much more wrong with our bodies and its reactions that i dont understand how they correlate to OI. (like our chemical sensitivities etc)

[Kimberley]

Hello, I think Dr. Mark Stilman (Nerologist) at the Cleveland Clinic is VERY GOOD. He also knows Dr. Grubb and sometimes when he (Dr.Grubb) need a second opnion on a paitent he sends them to Dr. Stillman. Even his Nurse has Pots herself. They really know about POTS.

[MightyMouse]

The northern Ohio area seems to have a tighter population of knowledgeable autonomic doctors. From DINET's physician list (I took out the OSU site, as that's in south western Ohio). From personal experience, Dr. Grubb doesn't typically treat CFS symptoms directly--or do testing for that. He's a cardiologist specializing in the electrophysiology of the heart, with special interest in autonomic functions. If you want a CFS specialist, you might want to check out CFID's good doctor list put out by "co-cure".

http://www.co-cure.org/Good-Doc.htm

Dr. Blair Grubb

Medical College of Ohio

3000 Arlington Avenue

Toledo, Ohio 43614

419-383-3925

Dr. Thomas Chelimsky

University Hospitals of Cleveland

11100 Euclid Ave.

Cleveland, OH 44106

216-844-3495

Autonomic Laboratory

Dr. Barry DeRan

5705 Monclova Rd.

Suite 204

Maumee, OH 43537

419-897-7611

POTS, NCS

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

[Ernie]

Dr Robertson is at Vanderbilt.

[Eli6596]

Oh, that is very interesting. I did not know that Dr. Grubb is a cardiologist. I had always assumed he was a neurologist. I learn something new everyday.

karyn

[cnm1]

Evie

You might want to try David Bell in Lyndonville, NY. He is great - his specialty is CFS. Here is a link to his newsletter.

http://www.davidsbell.com/DSBNewsletters.htm

I don't know if he will have any grand new ideas but he someone worth staying in touch with - he has a lot of contacts in the field

Louise

[Evie]

Thanks so much guys

Yeh i still dont know what 'group' i fit into.... i just had a situation where when i stood up id get dizzy or faint (especially in mornings) and i occasionally randomly fainted. Other times i just generally feel lethargic and stoned (i dont smoke pot so thats not the cause of that feeling heh). My eyesight etc tends to be foggy etc. (but i dont need glasses as other days its fine). Also just have general muscle weakness that varies from day to day.

That all fits into a OI catorgory?

I hope so .. at least this way i sort of have an idea what im treating... with CFS im in the dark. However i was worried i would fix my bloodpressure and then i dont really know what to do next if im not all better.

[Guest Finrussak]

maybe you can try what I first did pre-dx with crazier sx...? write a brief cover letter describing episodes and frequency, what if any provoking factors etc...and attach brief med history. send to BOTH cardio and neuro depts of Mayo, Cleveland clinic, Johns Hopkins and Vanderbilt...someone may pick up on it and direct you further. Thats how I eventually got to Grubb. (he was at one time with Cleveland Clinic as many of his earlier journal articles state so Im guessing that Like Lyme, an intelligent and likeable professional with interesting interests in unusual conditons passes info along!)

You may have to go to 2-3 different ones...even tho sx cross over for many illnesses, the CFS and POTS type stuff are often handled by different specialties- the latter being a neurocardiac issue ( hence neuros and cardiol in it) and the former so far being taken as an immune system (immunologists or rheumatology), or even post infection condition (infect disease guys).

As for Vanderbilt, you will have better response from Dr. Biaggioni as (in my opinion) Dr Robertson ( like Dr Low of Mayo)_often chooses his patients by what research he is doing at the time or what they are "looking for"...as evident by his totally cold- form letter- response to my Drs here with NO suggestions as to where else to go, what to do. In contrast Dr Biaggionni not only offered to see me ( I was way too ill for the 14 hr trip) he also suggested r/o tests and possible meds in the short term. Plus he also mentioned some names of other drs altho they didnt work out. The 2 work together but have totally different personalities and priorities. Thats why I suggest you mail to the dept and request that they give your file to anyone who may be able to help ( the HEPA privacy laws means you kinda have to tell them its ok to pass the file along anyway)

Good Luck

[Evie]

Oh wow so much information

It was Dr Low not Dr Ho! silly me.

I just realised as a international paitient it will be quite costly as insurance wont cover it and it will be in US dollars. eek. I will definately keep all this info in mind and if i dont continue to improve i will consider which dr is most viable for me at the time.

Its so confusing when symptoms seem to cross over so many different specialities.

[Guest Finrussak]

mail and email are not too costly, why dont you write them anyway explaining how you live out of the country....and maybe one will take heart and offer to be a long distant consult to your local docs??? worth a shot...PLUS by the tone of their answers and the content as well...youll have a better idea as to who to go to eventually!!

[MightyMouse]

Dr. Grubb's hospital is a public one, so the cost of a visit is less expensive than a similar visit to either a private one (aka Mayo) or to a physician in a place like NY, LA, etc. My visit in 2001 cost me 175$ USD for a 3 or 4 hour consult, compared to my NYC neuro that cost me 300$ for just an hour of not very knowledgeable care.

I'd offer to put you up at our home to save money, but we're not near any major resources...yet. Maybe someday Philadelphia does have a few locations with a tilt table and autonomic lab, but honestly most of the docs don't know what to do once they've made the diagnosis of ANS dysfunction. We're 90 min from NYC by car, about the same by train. 120 minutes to Baltimore--less by train. 9 hours by car to Toledo, 8 to Cleveland (where I can say hi to my in-laws) with no direct public transit--except maybe by bus???

Nina

[amy54]

Hi Evie,

What drs have you been seeing in Australia that are good, if you don't mind me asking. I'm in Australia - Sydney, and haven't been able to find any recommendations for drs that have done anything with POTS or orthostatic intolerance. Any help would be greatly appreciated.

BTW - I have POTS (diagnosed at the start of this year) and CFS.

[Evie]

Thanks nina

Hi Evie,

What drs have you been seeing in Australia that are good, if you don't mind me asking.? I'm in Australia - Sydney, and haven't been able to find any recommendations for drs that have done anything with POTS or orthostatic intolerance.? Any help would be greatly appreciated.

BTW - I have POTS (diagnosed at the start of this year) and CFS.

<{POST_SNAPBACK}>

Hi amy

Sorry just a few questions who diagnosed you and who have you seen so far? they should be able to give you references to other drs.

Originally when i was diagnosed with CFS by Prof wakefield at The Prince of Wales Hospital who specialises in CFS. He told me i had hypotention and to get up each morning and walk (this was 6 years ago)... that was bascially impossible for me to do at the time. I suppose some drs know about it but dont tend to help in the treatment department. However he may know more about it now.

Since then my local dr put me on florinef and as my cortosol levels were playing up i was sent to a endocrynologist Dr Katherine Samaras at St Vincents who referd me to a Neurologist Dr Garrick who diagnosed me with OI. However i am under the care of Dr Samaras, but as far as i know she does not usually treat OI. I just re-read what i wrote and that could sound quite convoluted. eek.

Are you getting any treatment at all for your POTS?

Have they ruled out any autoimmune problems or hormonal problems (like do you have tests that may say your cortisol levels or some other levels are out of whack?)

I kind of got to her through a back door, im not sure if she takes paitient who would just present with OI (but its worth a check as she really is lovely)

A friend of mine goes to Dr schloeffel at Gordon and says he is great. He specialises in CFS. I dont have personal experience with him, but i have seen her make vast improvements under his treatments. Im not sure if he knows about POTS but maybe you could ask his secretary as it does occasionally go hand in hand with CFS (as we know )

Feel free to PM me any questions if you dont wish to go on about it on the board.