My Take on the Symposium
AnonymousNovember 10, 2008 at 12:38 pm
I would like to take a moment to give any reader my take on the 2008 GBS-CIDP symposium. This was my first time and I was Impressed.
The Foundation found a wonderful Facility to Host this. You could go anywhere in the large expansive faciltiy without going outside.
Hiliton hotel staff was more than accomodating, helping those who needed it with the utmost in care and respect as far as I witnessed.
The food was outstanding. Breakfast, Lunch and Dinner. All top notch. Plenty of water at the workshops. A very comfortable setting.
Many of the speakers were Head of Neurology at their associated Hospitals like Thomas Jefferson, John Hopkins and I think Mayo I am not sure. Another from Boston. There were specialist for the emotional side of the situations that were awesome. All the best thinkers in the field. talking off the cuff.
We talked about current treatments, Avonex, Rituxan, and a new Trial of a EPO drug that may be a future GBS nerve growth factor. They are still stuggling with trials on that, but havn’t given up. That was funded by the foundation etc. Talked about fatigue and that controversy and the Flu Shot etc.
Lots of time inbetween to mingle and socialize. Walk up to complete strangers and talk openly about our conditions. There were people from many countries attending like 10 or more i think.
On the State Night Dinner which was like a high end dinner, they raffled of a Rolex and alot of other goodies. this was some much fun but yet serious.
I left the Hotel Sunday morning very happy and satisfied with things and gained a better understanding of everything including the viewpoints of those who openly spoke, both doctor and patients as well as met several folks from the forum. I really like it.
Have a Great Day!!
AnonymousNovember 10, 2008 at 12:52 pm
I’d have to say ditto to what Tim said. The hotel was quite a walk for some but very nice and the staff was excellent and always there to help.
True that you could walk up to a stranger and talk for hours about our conditions and find yourself making a new friend.
The meetings were informative. The speakers took as much time as they could to answer questions, etc.
I met a lovely lady from New York that was in a wheel chair but could walk some. She was so proud of herself for coming so far since her symptoms began. She’ still has issues with swallowing and speech and sometimes it was hard to understand her. But, she ,like many others I met, was a very neat lady.
I will definitely attend future symposiums.
welcome home-it was great meeting you all and hopefully more can attend next time.
AnonymousNovember 12, 2008 at 6:32 am
It was a good time there. we got into O’hare Thursday at 8:30 am so Debbie and I went into downtown Chicago and spent the day at the Navy Pier. Then worked our way to the Hotel for the weekend.
From what I gathered on the Flu shot thing. The Majority of Dr’s basically said that if you are immunosupressed or taking medicine that causes that, you should get the flu shot because the incidence rates made sense. they did not factor age, young or old etc. The patients on IVIG, I believe the comment was they should not need one. I may be wrong there, check with Dawn on that one. She takes great notes.
So I am confused a bit. My Neuro said no flu shot for me. I am 43. been In good health, always got the flu shot etc. He maybe didn’t want me to get it due to me starting immunosupression right at the time flu shots are out. Who knows. Each person and individuals situation is different so It does not suprise me to hear big differences in opinion.
The testing on Avonex came back that they could not prove that it made noticable difference because when they selected trial candidates. It was not proven prior to the study that they were IVIG dependant. so when the test commenced and they stopped IVIG and kept on with the Avonex. the Results were inconclusive. They felt that perhaps some of the people using IVIG did not need it at the time or where gettting too much of it or they were basically in remission. So Proving the Avonex made an improvement or could be used as a stand alone treatment was not conclusive. The Doctor speaking on this ended with, We are not giving up on this drug yet. Meaning another trial with better selection of candidates who are highly IVIG dependant may give a more accurate result.
AnonymousNovember 12, 2008 at 8:48 am
In the session of “Ask the Experts”, one of the Doctors did say that if your GBS was triggered by the Flu Vaccine; you should not get another. Otherwise it was O.K. to get the shot a year after recovery.
It was surprising that when the Drs. were asked if they all got the Flu Vaccine; half raised their hands that they did and the other half did not.
Guess it is up to the individual to decide.
My GBS was triggered from the Flu shot 14 years ago; so I will continue to stay away from it.
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