Shared Solutions Luncheon update

[Lulu54]

Hi all,
Last week I was looking for anyone else who might have been planning to attend the SS luncheon today in Dayton, OH.  I didn't get any response from you, so I went and sat with some other delightful people.  I gave them the web address for our site here, and hopefully they will check in and check out this wonderful community.  They have quite the story to share.

Anyway, before I digress any further I want to tell you my reaction to the luncheon - the speaker was a member of Team Copaxone, and she was very good - her talk was part inspirational, part motivational, and very knowledgeable.  There are ten of these ambassadors for TEVA pharmaceutical and Copaxone, and my guess is all ten of these MS patients would be worth hearing speak.  Her talk had little to do with her using Copaxone, and more about the challenges and opportunities we face living with MS.  If you ever have an event in your area that has one of these team members speaking, please think about attending.

The other part of the program was a local neurologist who was available to answer questions - need I say more?  He is a neurologist and not an MS specialist! He dodged giving any firm answers and for the couple questions I asked, he said he thought I had read more recent literature than he had.  That's a sad public admission.  

I specifically asked the black hole (hypointensities) question - can they repair themselves.  This neuro said absolutely not.  Dr. Kantor and my own neuro have both said yes they can and do.  Hmmmmm.........



Honestly I wanted to stand and invite everyone in the room to join us here where our questions get answers.  I did talk with a couple people afterward and invited them to stop through medhelp and check us out.  I hope they will .....

The TEVA people in the crowd did call their education people to get an answer for me as to the status of the TV-5010 drug trial (a variation of copax that would be injected once a week instead of daily) when the neuro doc said he had no idea since he isn't involved in trials.  Unfortunately the drug had problems and all testing has been stopped.  Funny we never read about those announcements in journals and other sources.  

So that is my report from today's lunch.  If you have the opportunity to get out and do one of these, please take advantage of the chance. I believe this was also sponsored by the local MS chapter.

I'm glad I went.  
Lulu

[shoshin]

I went to one of these things and the Q&A was the best part. Of course, they did have an MS neuro and he seemed to know what he was talking about. I guess it just depends.

sho

[Karen99]

Hi.  I thought I'd just jump in here and say that my experiences at these type of luncheons have always been worthwhile.  The presentations are informative and I learn new info each time. The question and answer sessions are always beneficial.  Good time to chat with other folks with MS too.

Besides that, the lunches and goodie bags are great!  As well they should be with the high cost of the DMD's!   They usually have a neurologist who is better versed in MS.