Really informative meeting last night from Shared Solutions.

[michelleric]

Just wanted to let you all know, that if there is a MS meeting near you ever, GO. This was sponsored by Copaxone, and had 1st a wonderful " talk" with a couple who the wife has had MS for 18 years.  It was beautiful all the support and love that was shown.  Wish my husband could have been there. Oh well, one day perhaps.  This man told us it took a couple of years to "allow" his wife to let his feelings known to her.  Didn't want to cause any more stress in her life. Enough about that.

The neurologist who spoke, was from the Mellon Center at the Cleveland Clinic.  He was fantastic and answered tons of questions.

He spoke lots about Gilenya (the new MS pill) and about Tysabri as well.  He spoke of MANY other things. but of course, those were the 2 that I was interested in. He took every question that people wanted to know.  It was a long meeting and so worth it.  Best one I have been to yet.

One BIG thing he stated, for all the people in limbo here:

You CAN have a DX of MS with a Negative MRI, negative LP, negative VEP and many other tests.  Only 1 has to fit, and the symptoms be there. (with a neuro exam or a detailed history.)

I found it interesting, and he is a leading neuro and does lots of research.

Also, they are having a study with Gilenya with 250 MS patients.  I would be one of them.  The Mellon Center has over 12,000 patients.

Many other good points made by him.  My sister went with me. That was a lift, and my first family to get involved. She pretty much cried throughout it, I needed to console her.  I was very touched.

Just sharing some other good stuff here,

Michelle

[anon07072023]

We've already been to a couple in our area, too, and I'd have to agree with you.  
Ours were very imformative. Plus, you get to hang with people who are either trying to learn for themselves or for a friend/family member.  

It sounds like the neuro who spoke from the Mellon Center at the Cleveland Clinic has his stuff together.  That's always good to hear.

Thanks,
Kelly

[sllowe]

I 2nd that all who can, go. These meetings are priceless.

Michelle, thank you. How wonderful family member went - such a big step forward. One I'm hoping to make one day too. I enjoy reading about that as we don't always talk about it.

-shell

[jujuminx]

I get invitations all the time and have wondered if they were worthwhile.  Next time I get one, I might just give it a try. Thanks for relating your experience.

Julie

[essdipity]

That's really good news, Michelle. Somehow these things are so uplifting if we believe in the sincerity and ability of the speaker.

This past fall I went to a Hopkins presentation by Dr. Peter Calabresi, who is a nationally known MS expert. It was fabulous. So I agree with you---Go!

I'm sorry your sister was moved to tears, but in the long run that's probably a good thing. KEep trying to get other family members on board, especially your DH.

ess