I saw my cute Neurologist today annnnddddd:
My multiple sclerosis is STABLE!
Great news!!! Turns out the lesions I have are the lesions I’ve had FOR-LIKE-EVER and they’re not active! No new ones to speak of. Just the ones that seem to have taken permanent residence on my brain–you know–for kicks and memories I guess. I won’t lie. I sure would like those old lesions to get the heck on out of my brain, BUT I’ll take what I can get.
As my doctor says, “Guess what? You have a beautiful brain!”. Hmm. Thanks…I think?
He’s also pretty darn thrilled with my physical improvement since I first met him almost 2 years ago and he gives me and the oral MS medication, Gilenya, A LOT of credit for that. As for Gilenya, there was a time earlier this year that he was worried about the reports of deaths while on it. Turns out, none of those deaths look like they are connected to Gilenya AT ALL (so sorry these people died BUT so relieved to hear it wasn’t Gilenya) and if there’s even a hint of a connection, they have nothing to do with my clinical make up and he is VERY HAPPY to keep me on it! Well OK then!!!
This Neurologist continues to be my favorite Neurologist so far which is saying A LOT since I have had crappy luck with these specialists in the past and I think he’s my 9th Neurologist in 10 years. It’s not just because he’s cute either. REALLY. No really. He’s knowledgeable, patient, compassionate, takes the time to talk to me, answers ANY and ALL of my questions, asks me about ALL of my health issues because he believes his MS patients can’t be truly healthy without taking care of the WHOLE body, his Assistant rocks it in the Assistant Department (and could give classes about how to handle Patient and Doctor demands), he responds very quickly to phone calls, he’s personable and quite humorous, pays attention to detail, he was very understanding when I had to cancel an appointment due to being sick, he’s proactive, and apparently he’s one of the top MS Specialist Experts in the country. You’d never know that from him. He doesn’t talk about that at all. I hear it from his colleagues (all the other doctors I see who work with him). Oh and did I mention he used to be a JAZZ MUSICIAN in a past life??? How crazy is that? How does that happen?–First a Jazz Musician, then a Doctor, then a Neurologist, then an MS Specialist??? When I asked him about the connection, he said, “I’m a Nerd.”
My clinical neurological tests during the exam went okay. I think I had some issues. He knows I’ve done those tests a bazillion times so he tries to trick me and ask me what I ate a week ago (not last night or this morning but a week ago). He tries to pull questions out of thin air and ask me what I don’t expect. When I answered the spelling of “orange” correctly (kinda hard to spell with your eyes closed–you should try it), he said, “OK Smartypants. Let’s see what else you can do”–and after he had me do a few more tests he told me to spell “orange” backwards…and then giggled about it. Yeah ha ha. Thank goodness I’ve always been a good speller and visualizer. Now you try spelling orange backwards with your eyes closed. HARD RIGHT????
So that’s that. My MS is probably just acting up because it wants to and because it’s been hotter. AND it takes nothing for me to get hotter when it’s extra sunny. And wouldn’t you know, he says I have a case of the “Double Whammy”…hmm…sensing a theme here. Isn’t that what my Rheumatologist said about lupus and MS last week???
So to end the appointment, he told me to “stop being so hard on myself.” He pointed out that I have multiple sclerosis AND lupus. Enough said I guess. I don’t know why that can’t stick with me more and I can’t accept that as ENOUGH.
Guess I just want to live a “normal” life WITHOUT multiple sclerosis and lupus.
BUT since that doesn’t seem to be in my near future (an obliteration of any disease at this point), I’ll continue to practice this “RESTING” thing that is all the Rage with doctors these days and TRY to be gentler with myself.
You are my hero girl! Such a poise, and quiet courage… You are awesome!
Love you my friend.