Mikes Blog

For those of you looking for an update on what is going on here at the Mayo clinic.   The reason we came down is we have been doubting the original Polymiositis diagnosis for quit some time now.  Everything we have read on the disease, the homework we have done, and the comments of Dr Pissdrunk (Pestrunk) have just made us question what really is going on with Mary.  So we came down here to the Mayo seeking information, verification, and/or a new diagnosis second opinion.  Thus far, it seems we were correct in thinking that Mary has been misdiagnosed although the doctors haven’t exactly said it in those words yet.  However, they have been using phrases like “A lot of red flags against it…” , ” This doesn’t look like any Poly I have ever seen…”, “Poly is inflamatory, and you don’t appear to be inflamatory…”, and “This does not appear to be a myopathy but more of a dystrophy”.  Which all this to me says “We do not think this is Polymiositis, we are unsure of what it is, but we can pretty much tell you its not Poly.”

Hopefully after the comparative muscle biopsy on monday we will be able to tell more of whats going on.  They want a new biopsy as well as a to look at the the original biopsy from Missou when Mary was 13.  How does all this make me feel?  Well I am happy that we might actually find out what this is and the possibility of new treatments that might work is very exciting.  The scary part is how damaged has Mary’s muscles been over the last 14 years from this apparent misdiagnosis?  Which allows the question, if Dr Pissdrunk had diagnosed correctly what was going on instead of just guessing(I say guessing, because of what has happened here this week, comments made here show that with all the evidence in front of him he ignored it) could Mary have had some semblance of a regular life?

Hopefully when finding what this is, we will have the answers, and maybe a way to get Mary back to almost normal.  We can only hope.  But the prospect seems to be there.  They have pulled Mary off of her treatments, and kicked back her medications.  Citing they are doing nothing and could possibly be doing more harm than good at this point.  So in a nutshell, that is where we are.  Still unsure, but unsure with hope.  It will be a few weeks before we know the outcome of the biopsy’s, but like I said, hopefully we will have something.

That is where we are at.  The biopsy will be done monday, then hopefully we can be on our way back and make it back home by Christmas evening.