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Old 08-22-2010, 02:40 PM #11
Pink Pink is offline
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Join Date: Sep 2009
Location: Southeast
Posts: 76
15 yr Member
Pink Pink is offline
Junior Member
 
Join Date: Sep 2009
Location: Southeast
Posts: 76
15 yr Member
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Hi Shayna, I've got puter problems and couldn't hold a connection sooner - on kids now.

Thank you very much for your post. I'm sorry to hear you have infection problems too, but very happy the antibiotics are working. I didn't know anyone had a problem like this b4 your post.

I have not talked to my neuro or nurse about Fingolimod since Dec. Then, he said to put one one this drug was like taking them off a proven drug (with sides pretty much know) to go with one he feels is unproven... I do know if he has changed his mind. I asked to be put on ty every 2mos (so I could get my health up), but was told no. I'm sick now but supposed to go in for ty on Tues and will get & post more info when I have it.

I have read Fingolimod has sides such as lung infection, macular edema, and an increase in skin caner especially for those who have been on ty. Those are my major concerns so far along with the risk of a flairs from coming off TY.

I'm going to try for ccsvi, but hold out little hope there due to my location and cost. Time will tell, but I now am ready to risk it, if I can get it. I know I'll have to be on some drug even if I can get it.

I think Natalie8 has found a great neuro. I really think she is getting great advise from hers,and her posts are extremely informative. I would encourage all to follow them. Thanks again Shayna
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