Quote:
Originally Posted by Mikanro
After 8 months of severe MG in a small town, in two weeks I finally get to see a specialist at Ohio State. (I see Dr. Miriam Freimer.)
I was just wondering if anyone had been there or another MG clinic. Maybe you could tell me what to expect? How it will be different than my 10 to 15 minute sessions with my current neuro who uses google a lot during our visits.
Many thanks!
Sent from my SM-G955U using Tapatalk
|
You should have a nerve fiber test to determine nerve conduction as related to cholinesterase. You should have a chest CT to determine if your Thymus gland is enlarged. You should have multiple blood studies checking your immune levels and more; but especially your immune levels. Doctors love to use prednisone; but I can't take that so my neurologist has me on Cellcept. Check the internet sites for the name brand of any drug your doctor prescribes and see if you can get money off in order to get name brand. Let us know how things go for you!
I am on IVIG @100gm/month. (Immune Globulin) Used to treat autoimmune disorders. Also, you can take this at home and do NOT have to go into an infusion suite. There are specialty pharmacies who will offer a financial waiver for the co-pay for IVIG which can be cost prohibitive to most. Some pharmacies will make you list every asset to the penny; other young start ups will take a streamlined waiver. You can also ask for an experienced nurse in the infusion of IVIG and not get some newbie from an area nursing agency who does not understand the drug. It is a live infusion from pooled whole blood extracting the immune globulin molecules. It cannot be infused quickly as some pharmacies will allow/instruct. Especially for your first 4+ infusions although you can react to any different lot.
Hope some of this helps!