Hi all,
I'm seeing my neuro on Weds and they want to put me on Gilenya.
Briefly, been on C, A and Tysabri.
Copaxone didnt seem to help me. Put me on Avonex then had to take me off as my WCC dropped dangerously low. Then Tysabri which I proved Allergic to after 3 doses.
So they put me back on A last August. Had multiple infections, viruses and have never felt so ill for so long in my life WCC dropped to 2.3 after 2 weeks! Came off in Feb and was supposed to start Gilenya in March. I told them I needed 2 months to recover my general health as its taken me weeks to finally feel well again after A.
The thing is, on Weds I want to tell them I'm not going on G. It lowers the immune system twice as much as A and I just cant live with constant infections and feeling so ill all the time. I can deal with my MS, but I cant handle being that ill for months again.
I'm waiting for BG12 which to me is relatively safe and looks really promising. I was going to suggest going back on C in the meantime as even if it doesnt help, it definitely didnt hurt me.
Am I being silly not wanting to go on G? I am also taking Vit D, Malic Acid, L-Carnitine fumerate and other supplements to try to get a similar effect as BG12 until it's available. My neuro is adamant that all his RRMS patients MUST be on a DMD.
Does my reasoning make sense, and can anyone offer any opinions or advice for or against my plan? I dont mind if you dont agree with me, just could really so with some views from others
Cheers
Rach
I'm seeing my neuro on Weds and they want to put me on Gilenya.
Briefly, been on C, A and Tysabri.
Copaxone didnt seem to help me. Put me on Avonex then had to take me off as my WCC dropped dangerously low. Then Tysabri which I proved Allergic to after 3 doses.
So they put me back on A last August. Had multiple infections, viruses and have never felt so ill for so long in my life WCC dropped to 2.3 after 2 weeks! Came off in Feb and was supposed to start Gilenya in March. I told them I needed 2 months to recover my general health as its taken me weeks to finally feel well again after A.
The thing is, on Weds I want to tell them I'm not going on G. It lowers the immune system twice as much as A and I just cant live with constant infections and feeling so ill all the time. I can deal with my MS, but I cant handle being that ill for months again.
I'm waiting for BG12 which to me is relatively safe and looks really promising. I was going to suggest going back on C in the meantime as even if it doesnt help, it definitely didnt hurt me.
Am I being silly not wanting to go on G? I am also taking Vit D, Malic Acid, L-Carnitine fumerate and other supplements to try to get a similar effect as BG12 until it's available. My neuro is adamant that all his RRMS patients MUST be on a DMD.
Does my reasoning make sense, and can anyone offer any opinions or advice for or against my plan? I dont mind if you dont agree with me, just could really so with some views from others
Cheers
Rach
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