Reply To: Anti-MAG treatment update
Thanks for your feedback on IVIG. No, I did not receive a “double” loading dose of IVIG at my first treatment last week. Also, I received the 5% IVIG instead of the 10% IVIG that I have read online that is used for CIDP. The nurse told me the 5% is “safer” to prevent side effects. But now I am wondering if I did not get the “double” loading dose and only getting 5% IVIG if I am getting the proper “therapeutic” dose required to help or stabilize anti-MAG?
I am still hopeful for Rituximab and will push for it if the IVIG does not help or stabilize things by my 3 month followup with the neurologist. I assume she will give me the EMG test as you mentioned you have received.
You are SO right about being your own best advocate since anti-MAG is so rare and just by doing online research, you may know more about anti-MAG than most doctors. My first primary care doctor was annoyed when I mentioned my numb toes and feet at my physical. He walked out saying “You need to make another appointment. I don’t have anymore time and have other patients.” And, this was at my physical! So immediately I changed to another doctor in the same office and told him why. Then to his credit, he ordered blood tests that helped diagnose anti-MAG Neuropathy. He seemed excited when he called me with the test results since he said it was a rare disease in his experience. So yes, if a doctor is annoyed at your questions, find a new one!