I called my neuro yesterday morning and asked for him to refer me to USF in Tampa first and not to proceed with the Mayo Clinic referral yet. If I can get into USF in the near future, it would be so much easier for me than traveling to MN. this time of year! Also, I would not have anyone to make the trip with me. My 2 sons that live in FL. both have MS and their wives who look after them also work outside the home.
I still work because of the need for insurance. I am a State of FL. Senior Vocational Rehabilitation Counselor so at least I sit behind a desk:p
I had my second Solumedrol 250 infusion for the month this morning. It REALLY helps my breathing and energy level, but I get increased nerve pain for a few days after the 2 day infusions. This is my 3rd month of getting the infusions so I can see a pattern starting to appear.
Was it the doctors from Johns Hopkin that gave the symposium in WA. state last year? I did not find out about it in time or I would have gone. That was when my neuro started to mention CIDP as apossible diagnosis.
Thanks again for the support!