Multiple Sclerosis (MS) Support Group

I HAVE BEEN ON SINCE OCT. &HAVE NOTHING BUT GOOD THINGS TO SY, SO FAR. NO HAIR LOSS. NO SIDE EFFECTS AT ALL (KNOCK ON WOOD). HAQD VERY ACTIVE CASE. STILL NOT WALKING BUT MORE STRENGTH, LESS FATIGE, BETTER BADDER CONTROL, VISION LITTLE BETTER. SLOW & STEADY. HOPEFUL. REBIF AND COPAXONE DIDNT WORK. PULLED OUT THE BIG GUNS, SO TO SPEAK. GOOD LUCK WITH WHAT U CHOSE.

HAD 9 SHOTS OF TYSABRI SO FAR SO GOOD, HAVNT RELAPSED IN ALMOST A YR, MY HAIR FELL OUT WHEN I WAS ON STEROIDS FROM MY RELASPES WITH AVONEX, NO LOSS OF HAIT ANYMORE. BEST WISHES
JAV

" I had to switch from REBIF to either Copax or Ty and chose Copax for 2 reasons. The antibody effect in Ty if you have to go off it. IF you go back your more than likely will have built up immunity on it, so make sure there is no reasons for you to stop Ty ie: pregnancy.

Second, within the next year is the point in months when those others died on TY because they were also on other drugs and I just feel better when that mark is passed and all is fine.

With Cx i am having flare ups so I am looking into LDN and mal-absorption. Some take CX and LDN together I have not read up on that yet to see how good that is yet. If I switch than I would take it alone.

Just for info; CX 10 year study claim is not as hip as it sounds, They say that 90% of those using Cx after 10 years are not using a walking aid. What they don't emphasize is that those in the 10 year study are only 50% of those who originally started the study. When confronting the nurses they can't tell you why the 50% left and really nobody can they just send you a 50 page medical report I can't decipher. I plan on taking to my next dr. apt.

Goodluck, just do your study on TY before you trust a doc to put you on it. MY MS NUERO #1 was biased towards it and pushed it and pushed it until I confronted him with some strong questions (from hear and from research)that he came forth with some honest answers.

Do your homework, hear is a great place to form questions to focus your research or form questions for you dr.

My freind did two infusions of tysibri, she had a terrible allergic reaction, and her brain bled. This was last Oct, and she now has trouble with her vision, and tons of spasms. My nero said No way when I asked about it. Good luck.

Hello Smiling, I had my first infusion of Tysabri yesterday and I am still standing. The hour went by quickly, and I must say the infusion center followed the Touch Program protocol to the letter. I was under observation for another hour after the infusion. I have short hair, and all is still there.

People have had hair loss? Jeepers, I never heard of that one. Please do tell...

I had my second infusion on 5/21 (a little more than a week ago). Since my first infusion I've developed spasms/tremors all throughout my body which are getting worse, pain increased. I'm also extremely exhausted. Just did a blood test today to test for antibodies. None of the CRAB drugs worked for me, so this is last result. I've never heard about hair loss on Tysabri.

I have been on this newly but it has remarkably helped me i was realpsing through all other meds the shots, the steroids, etc,and no I did not lose my hair ...I think with each person its different people were telling me stuff like that as well but i had to block it out and listen to my docs and say everyone is different that might not be my side effects and of course they were not i just ended up with some tolerable joint pain... stay positive and i am here if you need to chat