Quote:
Originally Posted by bethanylynn
I've had NOTHING but problems since beginning Rebif.
I wobbled a bit when walking before rebif, but now my balance is GONE and I have to hold on for dear life before taking a step! I KNOW this is not progression of the MS, but part of the rebif BS. I was back to my old semi-wobble and comfortable sleeping during my "No More Shots, D*mmit!!" protest a few weeks and stopped the shots for 3 weeks.
After ONE effing shot, it is ALL back... the spasticity (spelling???  Help!), the relentless RLS, my inability to walk to my bathroom without falling over...
My neuro and the MS specialist at Johns Hopkins said that rebif was the best treatment for me...but how in the h*ll do I function daily like this? The MS doc said I might be a candidate for tysabri (spell help again!??!!  ), but I certainly DON'T want to start something new and be worse off than I am with the rebif!
In general, how do you weigh functioning competently today with keeping the ol' MS monster at bay? 
Bethany |
Hey Bethany, better late than never...huh!
I am no longer on any of the MSMDs, but took my turn with Avonex and Copaxone. Notta results with either....kept right on progressing in disability.
I am also on LDN and have been for 4 years. In that four years I have not progressed any further in disability. Unfortunatel, I didn't start it untill I had already progressed to SPMS. I am just so thankful that LDN seems to have stopped my MS progression.
BTW Naltrexone is FDA approved...it has not been approved for MS, as so many meds we take are, also, not approved for MS. We are prescribed and use LDN off label so to speak, as are other drugs that were not created for MS but do help in the maintenence of our illness.
If Rebif is not doing the job for you, then "off with it's head" Copaxone may be worth a try or Tysabri-(Not special, just another MSMD).. I chose the cheaper, safer, more efficient, feel good Med (LDN) ...so sue me...LOL.
Whatever you decide, Bethany, I wish you much luck and good health.
