Reply To: nerve healing process

December 11, 2012 at 1:41 am

Lori – don’t wait if you are even considering SCT. I sent my application in on June 6 & first evaluation appointment was mid-September. My diagnosis was confirmed 7 we applied for insurance coverage and got the 1st formal denial in early November. At that time the self pay option opened up and I opted to go that route while we continue to appeal the insurance decision. AFTER  I paid then the pre-testing started – last week Dec 3-7. As the results of those tests appear to be ok I am now scheduled to be SCT #38 starting in Mid-January.  My point is starting the application process is not a point of no return it is just the inquiry to see if you even get invited to Chicago for the confirmation evaluation. Lots of time to change your mind. I moved fairly quick with the decision. 1st symtoms August 2011, major loss of strength & mobility by Dec. 2011, went thru steroids with little improvement then to IVIG with limited & cyclical improvement even with weekly infusions. The CIDP specialist neurologist at NW (Dr. Allen) advised there were some other treatment courses i could try but they to were designed to fifght the symtoms not fix the route cause. I had full blown diagnostics done at Mayo in Jacksonville FL as I had used them for the past 15 years of so for executive physicals & they had great records of my unremarkable overall health over that time. I did consult again with my Mayo neurologist & he was supportive of the SCT investigation if I was unresponsive or had limited response to the current treatments. My local neurologist is not in favor of the process as he feels it is too risky but respects my decision.

In a nut shell, if your are seriously considering SCT apply now. the timing will allow you to see if your new treatment is working if you have the opportunity & are accepted for Dr. Burts program. Any readers try this link if you desire more info