Doctor database


Posted by Shirley-Arkansas-USA , Sep 22,2001,21:32   Archive
Hi all,

I saw this posted on the dystonia bb. I believe that it would also be useful for those of us with Blepharospasm. Be sure and read the disclaimer at the bottom of the page. I assume any doctor that is interested can log in his information and be listed. This site does not guarantee that these are wonderful doctors but it does give you some sort of a list that can be worked from. I saw at least one doctor that I have already fired. Some of these doctors don't treat BEB but it does state what they treat and their specialty. I found it interesting.

Shirley in AR.
The below information was copied and pasted from a post on the dystonia bb. It went into more detail if you would like to hop over there and read it:

The DMRF doctor database is now available ON LINE. You can go to http://www.dystonia-foundation.org/health/ and click on your state or province, or click "International" for a limited number of referrals outside North America.




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Re: Doctor database

Re : Doctor database --- Shirley-Arkansas-USA
Posted by Lynn Yarbrough , Sep 23,2001,17:04 Top of Thread Archive
Hmmm. I checked out this document and found it wanting. Of the six Dr's that have given me injections, in Boston, Baltimore, Washington, San Fransisco, and LA, NONE are listed. That includes big names like Gary Borodic in Boston, Neil Miller in Baltimore. Also Dr. Scott in SF. So if I had only this list to work from, I would have missed some real pros.

--- Lynn




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Re: Doctor database

Re : Re: Doctor database --- Lynn Yarbrough
Posted by Shirley-Arkansas-USA , Sep 23,2001,18:53 Top of Thread Archive
Lynn, It is indeed lacking. There were only 4 doctors listed for the whole state of Arkansas and I can think of 5 more right off the top of my head that I know of.

I do think that it is important in that it is at least a start. I wouldn't think that many of the doctors would even know about the database. I was pleased to see the one neurologist whom I am impressed with from Arkansas was on the list. And in Missouri, Dr.Perlmutter whom I see and his associates were on the list.

Hopefully more of the doctors that do specialize in dystonias will put their information in and a larger database of doctors will be listed. You can notify those doctors that you know that are good of the site and encourage them to add their names and information.

I'm not recommending that people just go by this list but it is something that can be watched and hopefully will build and people will have an additional place to look for physicians. One still has to do their homework and check out any doctor they plan to see.

I just pointed it out as something that apparently has just been started and might be of interest or help to some. I'm wondering how the doctors knew about the site. Were they notified? Are they following the dystonia sites? The site does state that if you know of a doctor that is treating dystonia patients (blepharospasm included in this)that are not on the list that you can contact the Dystonia Foundation with the doctor's address and they will contact them and send them a form to complete. I noticed quite a few doctors that didn't have much information listed so the Foundation may just be aware of their existance through a happy patient and the doctor hasn't completed the input data. Just a guess.

Thanks for the input Lynn. I didn't look through all the states. I'm going to do some more checking and see if other doctors that were at the BEB conference are on it. You are right that some of the doctors that you mentioned are very well known and active with the BEBRF and Dystonia Foundation.

Shirley in AR.

--modified by Shirley-Arkansas-USA at Sun, Sep 23, 2001, 19:11:30




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Re: Doctor database

Re : Re: Doctor database --- Shirley-Arkansas-USA
Posted by June in Toronto (June Floyd,June in Toronto), Sep 24,2001,14:03 Top of Thread Archive
As part of my membership work with our local dystonia group a couple of year's ago I applied for a doctor's list for this area from the dystonia foundation. I found it to be lacking as well but understand that the doctors themselves need to apply to be placed on the list )I see mine is!). Patients can ask the foundation to send forms for this purpose to doctors they think are good and encourage them to complete and return them to the foundation.

June in Toronto who used the doctor's list to send out up-to-date support group listings and information.




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Re: Doctor database

Re : Doctor database --- Shirley-Arkansas-USA
Posted by Moderator-JB , Sep 24,2001,15:02 Top of Thread Archive
The database is a great idea, glad to see it up and running.

Something that we could do to help it along is to submit to the BEBRF or DMRF our physician's name, address, etc. by e-mail.

Too bad we can't use little notations beside them such as:

1. Great Doctor, talks to me like I'm a human being, is kind and caring.

2. Do not pass go, do not collect $200 - go straight out that door and never return.

Judy (who has no rescue Rottweilers in house at the moment :(

--modified by Moderator-JB at Mon, Sep 24, 2001, 15:05:22




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Re: Doctor database

Re : Re: Doctor database --- Moderator-JB
Posted by Shirley-Arkansas-USA , Sep 24,2001,21:51 Top of Thread Archive
Sorry there aren't any Rottie rescue babies in your house right now. I know that it is a lot of trouble but oh so enjoyable, too.

It is a shame that we can't critique the doctors in a separate database. We could just asign them a number 1 or number 2 as you have listed above. We wouldn't have to get down and dirty and specific about their "failings".

I do hope that people who really like their doctor will check the database and if they are not there, send their information to the BEBRF or the DMRF.

Lynn, give the foundation those doctors names that you think are really good that weren't listed.

Everybody else look at it and get the information emailed in. It doesn't take long to look up their address and email the foundation.

Shirley in AR.




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Re: Doctor database

Re : Doctor database --- Shirley-Arkansas-USA
Posted by kathy , Sep 24,2001,16:09 Top of Thread Archive
this is a good thing. now we don't have to worry about who to recommend. others can find one in their areas or even several. i think the list should be added to also, if someone finds other good doctors who treat these disorders.



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