Quote:
Originally Posted by shayna
Hi Krohe,
How did the meeting with your neuro go?????? Have you decided on what you will do next????? This is a very personal decision. I can only tell you that if it were me I would get an infusion of Ty immediately. But, for me quality of life is so much more important than quantity. I'm 63 years old and once I was finally diagnosed we were able to trace my m.s. back to when I was in college.
I'm sending lots of good vibes your way, keeping my fingers crossed for you and sending you lots of hugs!!!!!!!!!!!!!!!
{{{{{{{{{{Krohe}}}}}}}}}}
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Hi Shayna (and all that have replied),
We (DH & I) met with the neuro on Monday and I am going back on Ty.
They promise us (and I believe them) that they will keep an ever vigilant eye on me and any "new or worsening symptoms"
Their office is enrolled in he assay testing, so I will also be getting that as soon as possible.
In the meantime I continue to stab myself with Copaxone, which, according to the neuro, is better than nothing. I'll only need a 2 week break in between C and Ty.
I need to start the enrollment process all over again, so I am imaging it will be a month or so before I can have my first (37th?) infusion. According to the neuro the clock doesn't start over at "1", but is definitely less than 37.
He said that those of us that went on Ty shortly after its re-release are all trailblazers. He honestly admitted to not having all of the answers. (which I respect. That's better than giving me an answer that turns out to be false only to save his ego)
I asked about lengthening the time between infusions to 6 or 8 weeks and he was not in favor. Mostly because my MRI is so active and my symptoms are back with a vengeance. Maybe when I schedule I'll just tack a few extra days on, and go 30-35 days instead of 28.
I guess I'm just looking forward to (hopefully) feeling better before the summer is over. I have a lot of stuff going on in my life right now (selling our house, buying/building another, SSDI appeal process, etc.) that I will need all of the energy I can get.
Thanks for everyone's well wishes. I will keep you posted.
Be well,