Thanks, Bear

February 16, 2011 at 2:24 pm

Appreciate your candor and your feedback. I didn’t know (we never know what we don’t know) this- “Generic Name: mycophenolate mofetil (oral/injection) (MYE koe FEN oh late MOE fe til) Brand Names: CellCept”

In case there are more out there like me, Cell Cept is mycphenolate. Oh, poor me. I should of just looked it up…….

I saw, am seeing, a ‘new’ kid neurologist. She said ‘…it is imperative that you find a neuromuscular specialist…’

I lost and/or am losing legs starting with foot drop progressing to loss of thighs and hamstrings (the proximals). Fortunately, I feel stronger since the intervention at Mayo Clinic Minn in 2009 and. emphasis on [B]and[/B], Much more frequent IVIG than ‘normally’ recommended. 2 x week 3 months; 1 x week 6 months; 1 in 2 weeks for several months and then a new 5 day sequence at UCSD followed by 3 days in a row every three weeks- termed a bolus, by one doctor.

Returned to Mayo and have been put back on 1 x week for 6 months. All muscle strengths I compare ‘subjectively’ are improved.

Are you only on the immune suppressant? were you ever on IVIG?

Thanks and good luck to you.