MS lesions NEVER go away. This was said to me yesterday by my neurologist who at the same visit said "If you need me, call". He also said "No MRI- there is no indication for one" Why is that ? "I don't get MRIs just because a patient asks for one". Why do you think you are better? The antibiotics, I said. Silence and avoidance of eye contact. (Sound familiar?). "Have you ever seen this?" I asked. Finally I asked for the third time and sat staring. No, was the reply. Also, I have moved UP on the EDSS scale from "at least" 6.7 to 2.5. I said I have been up running around for 10 hours.
I am PPMS. I have had ONE attack and it has lasted 10 years. I have been fighting back very hard for over 15 months now. Avonex is in my past which was probably the biggest shock for my neurologist. While writing he said distractedly " Of course, you are taking your Avonex" Period, not a question mark. I said "No, not for two weeks." His look said that couldn't possibly be. He looked back and said " But in Sept. 2004, you said you felt great." I said "Yes, with Avonex and steroids"
At 6 AM this morning my husband said "You are not as stuffy and snory as usual lately" I answered that I didn't know I did that. He said sometimes he has to wait for me to breathe and he has known when I did because I was stuffy. He said he didn't know why. (I do not have sleep apnea- he is just a worrier. These 15 months have been hard on him) I do, I said. I believe it is the NAC and I am getting better. (On that point or any other, I would appreciate comments because this is serious stuff.) And I said that I am not the same person I was a year ago.
Sorry, Sarah, the neurologist said, with the smirk of neurodisbelief, that he would have to "see for himself" Obviously, he won't see yours or mine.
Flagyl will be due soon- my 16th journey into the abyss- have to check my calendar. Meanwhile, I am going to enjoy the "incredible lightbess of being". But to all my shipmates, the new world beckons.
Ignorance is voluntary bad luck. Lauritz S.- A True Viking If you come to a fork in the road, take it. Yogi Berra