I had my first IVIG treatment yesterday. Everything went very well. The nurses were real sweet. The infusion center bought my wife and I lunch. They had TV, WI-FI, CD player, lounge chairs. And a snack room with about anything you would want. This was at the CMC infusion center in Charlotte. My local hospital is not equipped for IVIG but Charlotte infusion center is only 30 minutes away.

The actual infusion took about 2 hours. I was given an un-medicated dose my Neuro wanted to see how I did on that. They started out slow and checked on me about every 20 minutes and increased the dose. As of this morning I don’t have any side effects nor do I see any change in my symptoms. I have another treatment this morning so we left the shunt in my arm so all we have to do is plug in. The nurse said I could see some changes by the weekend. I have 2 more treatments next week. Got my fingers crossed that I can see normal again.
Mike

Hi Mike,

thats wonderful that everything went well, here's hoping you can have the 2 treatments next week. Got my fingers crossed as well. sounds like a great place to get treatment, my little local hospital is great to, but not with all those extras
Kate

Thanks Kate, I was just so nervous and did not know what to expect. Everything about this disease is so unknown. I wanted others to understand the IVIG treatment is not really as bad as it sounds. They scare everyone to death with the description of all the side effects which usually bother the minority.
Mike

Yes I agree, in fact I spend the day reading and listening to music, if I get a good Dr to insert the iv, its uaually a good day. Last time I had headaches, but I think that was from a bit of dehydration.
How are you doing???

Mike,

Glad to hear your first IVIG treatment went well. Good luck with your furure treatments!

Rachel

Mike, That's so great that it went well. Keep drinking water, taking Tylenol, etc. Are you taking any Benadryl?

I hope your sister is doing well too.

Annie

I had my second treatment yesterday. It actually went better than the first. I called the infusion center when I left home and they ordered my IVIG so when I arrived 30 minutes later the IVIG was there waiting for me. I already had the IV shunt in so all they had to do was plug me in. It took 2 ½ hours to complete. Again it was the unmedicated version. When the treatment was done I was very light headed, weak and unsteady on my feet. When I got home I laid down for a short nap. When my nap was over I felt a lot better. I have 2 treatments next week. Thus far I have not had any reactions or side effects. Yesterday before my treatment I had a very slight headache but that could have been just pure stress. This morning I feel as I normally do.

Annieb3 I haven’t taken any Benadryl. As for my sister her single fiber test at UNC came back negative. It is back to the drawing board. We suspect it might be atonic seizures. She just needs more tests done I guess.
Mike

Well, seizures don't cause AChR antibodies.

I agree but the doctor at UNC did single fiber and said it wasn't MG. This morning she told me that she could hold her finger up and stare at it and her eye would close within 10-15 seconds. I told her she needs to see a neuro-opto maybe he could figure it out.
Thanks
Mike

SFEMG's can be normal in MG. Was the person who did the SFEMG an expert? Or a resident?