Monday, December 12, 2011

No New Lesions...No New Meds!

Today has been an awesome day...although it didn't start out that way.

I discovered late last night that my overdue annual neurology appointment was scheduled for 9:30am today and not 9:30am tomorrow as I remembered. So, I called the MBTA and the reservationist snarkily informed me that "The Ride is not your personal taxi service, Ms. Baker" and that, because I did not provide 24 hours notice, I would be placed on standby.

I've been falling asleep at night listening to Sissy Spacek read To Kill A Mockingbird which means that I have to put my alarm on "buzzer" instead of NPR. This may seem like one of my typical digressions, but it's not. I love listening to the book at night but I hate what feels like a violent assault first thing in the morning. The high-pitched buzz, which is really more like a beep, seems to drill into my inner ear and come back out the other side. And this morning, it was even earlier that usual so I could find out if The Ride had scheduled my trip to the neurologist. No such luck.

I rolled with the punches, got myself and the kids ready for the day, and looked up the fastest route via public transportation on my smartphone. I usually avoid buses. This is slightly embarrassing to admit, but I think it's just that the train somehow seems cooler. I have no idea just does. That having been said, I usually HATE taking the train to my neuro appointment because it takes an hour and a half and it involves the dreaded Green Line filled with overentitled 20-somethings who clump together in front of the doors and don't let anyone in or out of the train. I have actually come close to physically assaulting a woman when she gripped the handrail with her arm extended and wouldn't let anyone pass, although the conductor was screaming into the microphone that he couldn't leave the station until the doors were cleared. I politely said "excuse me" not one, but two times, and then decided to pry her fingers free of the pole. In retrospect, I probably crossed a line.

But I digress. Because Zane leaves for school at 8:30 and I had less than an hour to get to the neurology appointment, I decided to look for a faster route. And I found one! The trolley, the 31 bus, the 39 bus, and a short walk later, and I arrived at the neuro office with 5 minutes to spare and no assault charges waged against me.

When I filled out the usual check in forms, I realized that my plan was foiled to divulge my rebellion against the injectibles after Dr. S. gave me my most recent MRI results. Nevertheless, I completed the form honestly and wrote down the fact that I had stopped taking Copaxone in February. Yup. February.

When I was called in, Dr. S. reviewed my form and, perhaps not reading carefully inquired, "And you're on Copaxone...?"

Before he could check the box on his computer, I said, "No, actually....I stopped taking the Copaxone in February." And then I waited. For the roof to cave in, for the MS police to show up in riot gear and take me away, or, probably my worst fear, for Dr. S. to yell at me and not like me anymore.

But he didn't. He said, "Ok. Let's talk about that."

I think I love him...not just because he wears pastel shirts and would fit nicely under my chin, but because he listens. He is the neurologist I always wanted. He sees himself as a key player on MY MS team. I am the captain and he works for me. He makes recommendations but he ultimately leaves the treatment decision making up to me.

We talked at length about how I gave up gluten to help my Ulcertative Colitis and how I noticed MS symptoms (namely my vision and fatigue) improving.  He was very interested in my experience and told me that he's writing a paper about the link between the gut and MS. He also suggested that, in addition to giving up gluten, I may want to add probiotics into my regiment since they had shown to help UC and MS.

We had the typical clinical neuro tests where I have to follow his finger, walk as fast as I can down the hall, stand on one foot, touch my finger to my nose, etc. We went over my MRIs, image by image, and I learned that I have no new lesions. There was one faint shadow at C4 but it didn't concern him in the least and he thought it might have been because I moved during the scan.

I was beside myself with joy. I vibrated in my chair, grinning from ear to ear. I was prepared to hear that the lesion making machine that is my immune system had gone a little nuts after I quit the Copaxone. I was prepared to be wrong about my decision to go off the meds  So you can imagine how cool it was to have the medical professionals confirm, yet again, that I know my body and that I'm doing a good job listening to it.

Then we talked treatment. He told me about the current MS oral med, Gylena, and how the relapse reduction rate is almost double that of the injectibles. Did I say that right? People have less relapses on the drug. We talked about another oral med still waiting for FDA approval in the US that is currently approved for treating psoriasis in Germany and how it's been found to help people with MS. Dr. S. expects it to be approved in the next year.

Then, I identified three possible choices:  1. Start on another injectible, 2. take Gylena, or 3. continue to do no meds until the other oral med is approved. Dr. S. responded, "Well, choice #1 isn't really a choice, is it? You don't like the injectibles so they're off the table. They don't work for you if you won't take them."

I love him.

We decided....drum roll, please...

I am not going to take any MS meds (other than my Vitamin D and other OTC/vitamin nutritional supplements) for at least six months.  At that time, I will have another MRI series and another appointment to check in on how I'm feeling. If all is still well, then I will continue as I'm going for at least another 6 months.

Barring him telling me that they discovered I no longer have MS, this is the best news ever. Nothing has really changed but now I am compliant, honest, healthy, AND med-free.  As a gesture of gratitude, I donated 9 vials of my clean blood before I left the MS Center. It's rare to have people with MS who don't take meds and they can use it to research the causes of MS. One of the vials was for the CLIMB study that will follow me for 20 years. I told the 20-something office worker that if she still worked on the study in 20 years, she would be able to tell people: "Julie Baker is just as healthy and vibrant today as she was when I did the intake 20 years ago."


  1. Beautiful! Glad to hear everything went so well. Funny, I just went into the Climb Study last week. I didn't take any MS drugs for several years although I do now. I wonder if they are trying to get another perspective on this disease seeing that the current theory is that everyone should take a disease modifying drug.

  2. Hmm. that is cool spending whole day with out any tragedy that's cool. when ever you don't get any taxi then call me and hire me i am Orlando taxi and love to help others. well i love to travel by public transport as well why? because to get this feeling i am the best.

  3. Elizabeth--I think the CLIMB study was not one of those that required a clean (no med) sample. I guess we will both be proving them with success stories in 20 years.

    Orlando--I've had a lot of people try to market a lot of stuff to me on this blog, but you are my first self-promotional taxi driver! Way to toot your own horn.

  4. Wow, that's great news! Much congratulations...