Met with ms neuro in St. Louis. Found out that 1/2 of her time is spent seeing patients and the other 1/2 is devoted to conducting ms research. She believes that there will be oral meds for ms "soon."
She felt that I should try some type of treatment since I have 2 or 3 new lesions in the past year. So I am going to try copaxone again and she recommended that I try to manually inject. So I am hoping with the smaller needles and by slowly injecting the "crud" (
) I will have less injection site reactions and definitely less IPIR's. If I cannot tolerate it, then she recommends I try imuran or somthing similar to it.
On a more positive note, she felt that I performed well on the physical exam and also stated that my ms is still relatively mild based on the number of lesions and their size.
After I asked her a number of questions, she said I was welcomed to have an appointment with her at any time. At the beginning of my appt, she expressed that she did not understand exactly why I was there since she had consulted with my neuro over the phone. Then I explined why I wanted her opinion -- that I did not know what to do.
After she reviewed my MRI's and conducted her exam she stated a few times she was glad I had made the appointment. I got the impression that she felt that he was overreacting to a degree. She definitely does not agree with his suggestion that I try rituxan at this point given my reactions to meds and the status of my ms. I think she was also perplexed with the fact that he will not prescibe certain drugs.
Diagnosed April 2007
Started betaseron -- May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)