Dear Forum Family
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November 8, 2008 at 12:26 am
sorry no info
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November 8, 2008 at 7:36 am
Dawn,
Makes me want to thank everyone again that helped me when I first joined the forums. I felt the same way at a chapter meeting that I got to put names to faces with three people, I can imagine your excitement at meeting so many at the symposium.
How is Kevie doing?
Proud of our forum family!
Thank all of you.
Shirley -
November 9, 2008 at 12:28 am
Hi Dawn! I hope that I will be able to attend the next one they have. Duke kept me from going. But I hope to meet many in here the next time. Sounds like it was fun but also very heart touching. Hugs
LindaH -
November 9, 2008 at 9:53 am
Hello Dawn,
I’m glad you had a great time at the symposium. I didn’t find out about the symposium in enough time to make arrangements to attend. 🙁
Are the symposiums annual and held in the same location? I definitely plan to attend the next one as this forum is the first time I’ve been able to communicate with others who are dealing with GBS/CIDP.
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November 9, 2008 at 12:00 pm
Welcome home! Did they announce the location of the next one in 2010? I missed the one in 2006 and thought I would be well enough to travel to this one in Chicago. I am going to keep that date open for the next one! Please tell us what you were able to get from this meeting!
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November 9, 2008 at 4:37 pm
It was nice to make the connection and meet many of those we see here on the forum and within the Foundation. We were very happy to meet Everyone we could, and experience in mass numbers the available support.
My wife Debbie even got a great photo of herself with a studly young neurologist. He hugged her and made her moment. Hopefully not her whole day. LOL.
I highly recommend attending future gatherings like this. It was nice to meet you Dawn and all the other members.
tim -
November 9, 2008 at 6:42 pm
There was some info that was new, some that we know but it was elaborated on. I posted a reply to Jeri, re flu shot, that was some info I was curious about. There was one particularly interesting statistic about the median and average time for treatment and remission. Will look at my notes, I think it was 40 months for the average and 24 months for the median, I will check tommorrow, just a quick reply now. Cell cept seemed to get a bad rap not only because of the obvious, but some experienced cns involvement. Re cns, one doc said there is cns, another said no???!!! There was mention of interferon beta1 used in ms and also used in cidp now for really tough cases (side affects) Another encouraging study whos drug is used in other capacities, but could also help gbsers w/ axonal damage,. The drug has the ability to repair damaged axons and allow the to regenerate. Currently in the four legged stage, but the drug itself IS fda approved for other uses, so they felt confident that it would be able to move along quickly as a viable option. Will post more later
Dawn -
November 9, 2008 at 7:31 pm
I can’t wait to hear about everything. Very interesting learning all the new things that we did not know yet! Wished I knew also where they plan on having the next event! I would really like to go. This year was just to much going on with me. But hopefully the next one! Can’t wait to hear all about it!
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November 9, 2008 at 9:35 pm
Thank you, I was hoping people would post what went on at the symposium for those of us who could not attend. Keep the info coming!
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November 10, 2008 at 8:32 am
Tim, how did I miss the studly young dr ? :rolleyes:
Nice to meet all of you and glad you made it home safely.
They were talking about the next one being in Philadelphia.
Stacey
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November 10, 2008 at 1:43 pm
[QUOTE=Dawn Kevies mom] Another encouraging study whos drug is used in other capacities, but could also help gbsers w/ axonal damage,. The drug has the ability to repair damaged axons and allow the to regenerate. Currently in the four legged stage, but the drug itself IS fda approved for other uses, so they felt confident that it would be able to move along quickly as a viable option.
Dawn[/QUOTE]Could you share which drug this is?
Thanks!!(not sure if still referring to beta interferon or something else)
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November 10, 2008 at 5:42 pm
Please understand these things were very technical. I copied as fast as I could before the slides were changed. I am sure about the name and basic purpose, but I did have some questions. As I said, it is the the furry four legged trial phase for nerve regrowth , but the drug itself is approved for other uses, so once proved for nerve regeneration it should be quicker to get aproved for the purpose of nerve regeneration.
EPO pleiotropic cytokine drug name. It promotes growth of the nerves for regeneration. The doc said it had a 2x’s rate of growth. It is not a treatment for the condition, but promotes regrowth, which was previously not thought possible.
Dawn Kevies mom
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November 10, 2008 at 7:16 pm
Thanks! Erythropoietin. i use to work with that.
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November 10, 2008 at 8:14 pm
On the regrowth drug,
the dr did indicate that it would only work if it was used in the earliest stages
after a gbs attack. Someone asked about as if for cidp or treatment in later stages and they sounded emphatic to be used in like the fist weeks only.
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