Reply To: nerve healing process

December 14, 2012 at 3:23 am

Pat–I have spoken with Paula at Northwestern and she e-mailed me all of the paperwork for the sct. I have some tests scheduled on the 19th–next week.  If they show cidp  to be active still, then i will apply for sct.  I had rituxin 6 months ago.

So yes, have started sct process–am not wasting any more of my life with this disease.  I have said all along that I do not want to be having “treatments” the rest of my life and will do whatever it takes to be free of them and cidp.

The timing is a little better for me now than in the past for the sct, my youngest son has his license now, so that makes things a little easier, as he is involved in many sports, activities etc, doesnt need me to drive him everyplace now.

Was diagnosed in june of 2009, its been a loooong three and a half years, im ready to be done with this.

May I ask who you have for insurance?  i have anthem and am expecting to have to go through the appeal process with them if i get accepted into the program—ugg!!  im still in the appeal process for the rituxin.

I also went to Mayo–but the rochester MN to see Dr Dyck.  He also felt i have cidp–but “atypical”  unsure if that will affect sct or not. He said it is definitely inflammatory, but i dont have predominate demylination which is why its classified atypical. I have had the sural nerve biopsy and lumbar puncture which both showed signs of cidp.  I guess the only way to tell will be to try.  Im sure Dr Burt is not going to want to do a sct on people who he doesnt think it will work for–especially since it is still in the clinical trial phase.

good luck with your process—I hope you get the insurance approval.    Lori