Hello All,

I am scheduled for plasmapharesis in the morning and am feeling quite nervous about the whole process. My neurologist is very conservative in his approach to my conditions mainly because I not only have MG but also Stiff Person Syndrone (which I'm finding out no one seems to know much about). But I do feel comfortable with his approach - he truly listens to me during my appointments and ask lots of questions about my condition and feelings about what I'm experiencing. He not only is concerned about my physical condition but also my mental condition.

I was diagnosised with MG in 2009 after the removal of a large thymoma. I have had horrible symptoms not only the weakness of the MG, but severe spasms related to the SPS. He first tried Mestinon which I'm very allergic to and it put me in ICU for about a week where I almost experienced congestive heart failure. Then he has tried six IVIG treatments which didn't seem to improve anything except deplete my insurance's bottom line.

I'm on about four different meds just for SPS all of which are mainly to "dumb" me down so that I can function. They still haven't been totally helpful in that aspect so I guess that's why he has finally decided to go the plasmapharesis route. I have to take Prednisone for my only severe MG symptom which is that my eyes lock in place and I have double vision - the last time that happened it took two months before I ended up in the hospital. He worked me up to a high dosage of Pred to correct the situation and we have slowly been decreasing the dosage of the last year and 1/2 to a maintenance level.

Anyway, back to the plasmapharesis - I've commucated with my best friend's sister who has Guillan-Barre syndrone and she has been through the plasma route. She had high praise for the outcome and her only complaint was that it made her very cold during the process. I'm scheduled for two treatments each week for six weeks. Then we will access the outcome. I'll have the treatment at Emory Hospital in Atlanta so I feel somewhat comfortable with that.

Thanks for letting me ramble on - I'll try to update you on my experience at some point. This site has been a fountain of information which I appreciate.

Southern Bell