Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 , Several people on the list have seen Dr. on and feel he is excellent. I have met Dr. on and talked to him (at the Boston Conference), he is very up on MSA and the problems associated with it. Charlotte never saw him, but saw an excellent local neurologist who was a PD specialist, and she was excellent. However, we have met people who think our neurologist was not good. There is a certain " chemistry " in choosing a doctor - just as choosing a spouse. It is always best to talk to the doctor and fine one you trust. I feel Dr. on is certainly worth a visit if you are going to be in Nashville and can arrange a visit. You MUST realize however that " treatment " in MSA is limited to what the doctor can do to alleviate the symptoms. A local doctor who will work with you on adjusting and experimenting with different medicines can help greatly also. Often we would hear of someone on the list getting relief from a certain medicine and ask our neuro if it might help. She would either tell us it was not good for Charlotte OR as in the case of Baclofen and Comtan, she would try it. Our trial of Baclofen worked somewhat and Charlotte took it for a couple of years, up to her death. Comtan actually worked too well and gave Charlotte dyskinesia, so I cut the pills in half and tried that and finally cut them into 1/4ths (which worked for Charlotte). I discussed it with our neuro and she suggested other methods of trial which we were working with when Charlotte died (12 years after a dx of PD and 7 after the dx of MSA). My point in this is concentrate of working on the symptoms. There is NO cure for MSA at this time, BUT you can bet that if there is a cure found, we will find out about it FIRST. Pam and I do regular searches and use different search engines (for years); Fisher is also a computer person and knows how to do searches; now Barb Selleck and Vera have learned to use search engines. Many of our list members find news of MSA by getting internet refferals to news articles on MSA or stem cell research, so we will hear of any breakthrough. Take care, Bill Werre =============================== > > > Date: 2002/07/22 Mon AM 01:36:26 CDT > To: shydrager > Subject: MSA doc in CA? > > THANKS VERA. > > I MAY BE GOING TO NASHVILLE FOR CEUs FOR MY NATIONAL CERTIFICATION. > IF SO, I FIGURED I'D SEE ABOUT GETTING A REFERRAL TO DR. ROBERTSON > FROM MY INTERNIST - SO I COULD KILL 2 BIRDS WITH ONE STONE. I'VE > HEARD DR. ROBERTSON IS GOOD. > > THANKS FOR THE POST THOUGH, AND WHO KNOWS? I MIGHT TAKE YOU UP ON IT. > > OF COURSE, I WOULD REALLY LIKE TO KNOW IF ANYONE ELSE HAS SEEN HIM, > AND WHAT THEY THINK OF HIM. > > FROM WHAT I UNDERSTAND, THE LIST IS MERELY DOCS WHO HAVE SAID THEY > TREAT THESE THINGS - NOT THAT THEY ARE NECESSARILY GOOD AT IT :-) > > THANKS, > > PAUL > > Hi : > > You asked about a doctor out this way that know's about MSA. There > is this > > one, his on our list here for doctors and his out here in L.A. > Fred hasn't > > been to him and I hope if someone on the list has, will let you > know what > > they think of him. > > > > Frisca L. Yan-Go, M.D. > > Department of Neurology > > UCLA > > 710 Westwood Plaza > > Los Angeles, CA 90095 > > USA > > Phone: > > Fax: > > E-mail: fyango@u... > > > > Multiple System Atrophy (Shy-Drager Syndrome) > > Autonomic Failure (PAF, secondary Autonomic Failures) > > Orthostatic Intolerance (POTS, mitral valve prolapse) > > Sleep Distrubance and Autonomic Disorder > > > > > > Take Care > > Vera > > > Quote Link to comment Share on other sites More sharing options...
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