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#1 2005-11-03 09:48:41

pgodwin
Member
Registered: 2005-10-13
Posts: 12

Tysabri

I want to thank you Mr. Parker for setting up a new forum specifically for people with MS re: Tysabri/Avonex or any other issues.  Personally, I feel hearing other people's experiences on specific treatments or drug trials is much more valuable information than even our doctor's can give us.  I hope that you will be able to transfer the correspondence under "Other Prescription Drugs" forum to this one, as I feel it is good information.
I hope people will feel comfortable sharing their experiences, after all, we are all in this together!   Thank you for giving us a forum to allow us to do this.   smile

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#2 2005-11-09 07:21:04

jaderay
Member
Registered: 2005-10-18
Posts: 11

Re: Tysabri

Yes, thank you for setting up this forum. I was so happy to hear from someone else who had the same experiences I did and hopefully having a forum set up specifically for Tysabri will allow more people to join in.

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#3 2005-11-14 09:56:43

pgodwin
Member
Registered: 2005-10-13
Posts: 12

Re: Tysabri

Hello! Thought I would post from this forum and see what happens.  I hope you are doing better.  Did you have to go to the doctor about your weak arm and "itchyness" (not sure if that is a word? :-? ).  I hope you are doing better.  I know that if I do too much, I get tingly from the knees down and in my hands.  I also, get that itchy feeling in my arms that drives you crazy.  But now I can control that since I have been on Neurontin.   Finally a drug that really helps!  wink I know there is a forum for Neurontin on this site but it has really helped me.  They say it makes you foggy headed, I don't know about that, I always thought that M.S. was what made me feel that way.?? Anyway, I have tried to wean myself off of it but I can't even miss one dose and my body starts itching and tingling all over and that is enough to drive you crazy.  I wonder if there is some other medicine that can help with that??   Well, I hope you are better & didn't have to do to the doctor.   I agree with you, I have had my fill for a life time of doctors, tests, drugs ....etc!! Glad to hear that you are finally going to get reimb. for emergency room expenses.   Let me know how you are!  Talk to you soon!

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#4 2005-11-23 07:31:48

Guest
Guest

Re: Tysabri

Sorry it has been so long since I have written! I was in Vegas for a while on vacation with my husband and now with the holidays we have so many events with the kids. But, I wanted to send a quick note to let you know I have been feeling better, still have that "itchyness" a little, but other than that I rested A LOT and am feeling much better. Wanted to wish you and your family a wonderful Thanksgiving! I'll write more after the holiday! Take care!

 

#5 2005-11-27 08:51:38

pgodwin
Member
Registered: 2005-10-13
Posts: 12

Re: Tysabri

Happy Thanksgiving!  Hope it was a good one for you and your family.  We had the girls, hubands, boyfriends,dogs up for the week!  It was good to have everyone home again.  Anymore, it's hard to get them all together under one roof at the same time!  Anyway, I was greatful that I felt good and had enough energy to enjoy their visit.  Hope you did as well!  I know this is going to be a hectic month coming up for both of us, so I know we won't be able to keep up the correspondence like at first, but please know that I do think of you and I shared with my family about this person I met on the internet who has been through the same thing I have and what a blessing it has been just to know someone who can relate to what you have been through!  I did want to ask you if you received anything from your study doctor about starting up the new study?  I received an email on 11/16 from my neurologist saying they will be starting up the new study on Tysabri  probably by Jan. 1st.  They mailed a consent form with additional information.  I am curious if you received this info and what your thoughts were.  Let me know when you have a chance!  Talk to you then!
Thanks!
Pam

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