I communicated to my neuro that I wanted to do Ty as a first line defense. I first read about the drug in pathology notes, which called MS a "dread" disease and Tysabri as a "miracle breakthrough." The more I read, the more I became convinced that it was my best chance to reduce progression and lesion load. I also read Tec forums and it seems Ty is a side effect walk in the park comparatively.
I've since also been reading many disturbing things about loss of cognition that doesn't remit, gray matter atrophy, and inability to detect gray matter lesions except post mortem. I originally thought this was a white matter disease. I feel that my short term memory and processing speed has been affected, along with a blunting of affect. Has anyone noticed cognitive improvements on Ty?
Secondly, I was trying to get pregnant when I was dxed. The neuro said I could continue to try. I'm using donor material so my odds are slightly lower than trying naturally, and plus I'm over 30. I had vitamin D levels checked, but have to go back to the draw station for the JC test since they were unsure how to have it analyzed.
Guys, I originally made my decision based on my faith in neuroplasticity and the assumption that my brain could begin to "bounce back" when I began Ty. I thought a year or two would be negligible in delaying treatment. The reality of seems to be quite the opposite. Neurons only have a very minimal capacity to heal and regenerate (helps in preservation of memories and decreased cancer risk).
I'm sure being a woman the neuro thought everything was secondary to becoming successfully pregnant, but I would have appreciated a complete risks and benefits picture. I know that progression, efficacy, and personal decisions are not cut and dry but I would appreciate others' thoughts and opinions. Neuro spent most of the apt. complaining how the material I brought from the hospital, labeled "report," was not The Report (aside: shouldn't an Ivy League teaching hospital/hospital in major urban area have EMR/EHR medical recordkeeping??).
I've since also been reading many disturbing things about loss of cognition that doesn't remit, gray matter atrophy, and inability to detect gray matter lesions except post mortem. I originally thought this was a white matter disease. I feel that my short term memory and processing speed has been affected, along with a blunting of affect. Has anyone noticed cognitive improvements on Ty?
Secondly, I was trying to get pregnant when I was dxed. The neuro said I could continue to try. I'm using donor material so my odds are slightly lower than trying naturally, and plus I'm over 30. I had vitamin D levels checked, but have to go back to the draw station for the JC test since they were unsure how to have it analyzed.
Guys, I originally made my decision based on my faith in neuroplasticity and the assumption that my brain could begin to "bounce back" when I began Ty. I thought a year or two would be negligible in delaying treatment. The reality of seems to be quite the opposite. Neurons only have a very minimal capacity to heal and regenerate (helps in preservation of memories and decreased cancer risk).
I'm sure being a woman the neuro thought everything was secondary to becoming successfully pregnant, but I would have appreciated a complete risks and benefits picture. I know that progression, efficacy, and personal decisions are not cut and dry but I would appreciate others' thoughts and opinions. Neuro spent most of the apt. complaining how the material I brought from the hospital, labeled "report," was not The Report (aside: shouldn't an Ivy League teaching hospital/hospital in major urban area have EMR/EHR medical recordkeeping??).
(84th infusion last Tues). I wish I had been on Ty 2 yrs earlier as I believe I would be dancing (like I loved) and going for long walks .. Oh well .. My R leg drags, doesn't move well. I was dx'd 1988.
I thank G-d for Tysabri !!!!
Comment