I Am Drug Free

Tonight I find myself sitting on my parent's couch, here for my fourth visit in 4 months, and I realize that I am here with no commitments - well, no commitments to MS. I am here without syringes or pills that dictate how long I can be here. I am here without having to go home to Winnipeg in time for an appointment for a drug infusion. Just before arriving here for the holiday, I made a big decision on how to manage my disease.

Following an MRI, Jason and I met with my MS neurologist to review the results of the scan. The other priority of the appointment was to discuss my next possible treatment option (also known as the last treatment on the table) - the monthly infusion of Tysabri. It turns out that what showed up on the MRI played a huge role in deciding to go drug free. The other factor in the decision was the risk versus the benefit of being on Tysabri.

Do you want to know what the neuro saw in the images of my brain? He saw nothing - nothing new and nothing "active". For me, this is the second best thing he could have said to me. Obviously, the best thing he could have said was that the radiologists have been wrong all along - I don't have MS.*

*I still feel this way and as I always do, I asked him if this was in fact the case.

I have not had any change in the locations or size of my brain lesions in over a year. Add to that, the belief that I have not had a relapse since January 2008, and everything looks good. This is not to say that I don't have lesions or residual difficulties from past lesions. It just means that I feel pretty darn good.

Being drug free means being diligent and being aware of my body more than usual. Any sign of a relapse, or any new symptoms and my neuro will start me on Tysabri. I will have another MRI in 6 months to have a look at the inside workings and warnings.

*I made my parents a calendar with old family photos. That's me with my favourite t-shirt "Girls Can Do Anything" and my suspenders.

Me and the DMD's

Can you limbo? I have never tried but I once again find myself in limbo land with MS treatments. Therefore I have to assume that I'm good at limbo. This is a post about my ongoing relationship with the disease modifying drugs for MS.

At the beginning of September I finally gave up on Rebif, my second try of the "front line" disease modifying drugs for Multiple Sclerosis. There are four "front line" drugs, and three of them are pretty much the same. I had to stop Rebif because after months of on-again-off-again monitoring of my liver, my neruo decided that the long term health of my liver was more important than the minimally modifying nature of the Rebif.

Having tried two main treatments without success, I became eligible for a second line treatment - the daily pill, Gilenya or the once a month infusion of Tysabri. My opinion is that either of these treatments are considered to be secondary because they are newer and each pose certain risks to the patient (risks greater than the front line four). A screening process is necessary before beginning either Gilenya or Tysabri and I failed one for sure.

I am not eligible for the daily pill as an abnormal EKG, discovered during the screening process, is a definite contra-indication. I also tested positive for JC virus anti-bodies which is a warning for the once a month infusion (JC virus can lead to PML, a brain infection).

Are you confused? I am.

I have an MRI scheduled in December and a follow-up appointment with my neuro to discuss the risk involved with Tysabri. This means that Tysabri isn't completely off the table, but it can't be taken without dialogue.

Not all types of MS offer the opportunity to treat the disease course with a disease modifying drug. Having relapsing-remitting MS, I have the chance to lessen relapses with drugs. And I'm afraid that maybe my chances have run out. If you have been following along on my journey, you may remember that I don't like to not be on a drug. For me, as painful and scary as the drugs can be, they fit my lifestyle. I don't feel that I am in a position to research and introduce holistic or alternative options. These require energy, thought and financial resources that I don't have.

I'll let you know how it goes.

Emily

The Exit Isn't Far Away

 

Last week, I survived another brain MRI. I've become an old hat at this! I have now been in 4 of the cities 5 (or 6) public MRI machines - and I've got to say, the machine last week rocked! The image below is of the Siemens 3T ...my new best friend. It is shorter than a "standard" machine (but still longer than a CT machine and a smaller opening) and it has a 27" opening (compared with the typical 24"). This means that only the part of the body being scanned is at the center of the "tube" - and even for my 5'1" frame, half of my body was still on the outside!

 

 

It made different sounds than the "old" machine - it wasn't as rhythmic, and therefore not as distracting and entertaining.  I still had to have earplugs, and a head cage, and a cloth over my eyes, and no one talked to me in between scans...but it was a good experience. Maybe in a few years Winnipeg will have a MRI machine like the one below...but I won't need it.

 

Stand Up MRI

Time For a Change

First - I want to apologize for neglecting my blog. I've been busy - and quite frankly, I have increasingly felt that the mandate of my blog is shifting. Up until last night, I wasn't sure where it was going, and if I was ready to take it on - whatever it might be.

While hanging out in an MRI machine last night (trying to calm myself down after convincing myself that I must have metal somewhere on my body), it hit me: I want to blog about how I live, what I do, how I'm going to learn how to cook, crafts and hobbies that interest me, and general life stuff. To sum it up, I plan to share how I learned to make lemonade with the lemons that I was given.

Granted, this blog IS about my life with relapsing-remitting Multiple Sclerosis, and sometimes it might seem a bit sour. But most of the time, it will be cool and refreshing. So check back often, bring an empty glass and I will supply the refreshments (I might even make some cookies, and share the recipe with you).

Results, Prompting Questions

I'm sorry to have kept you in suspense for so long! I just realized that I haven't shared my MRI results with you. I have been celebrating since Monday afternoon...all by myself!

Let's skip the small talk and get down to business...

First of all, the Winnipeg Regional Health Authority has streamlined patient records. This means that when I have a procedure at a different hospital than normal, the new hospital can access the old records. This means two things to me: I can't get a new diagnosis very easily; and it is helpful to see if things have changed on my MRI's. I guess I will go with this being a positive development.

So...I still have MS...I didn't receive a "this isn't MS" report from the radiologist. Rather I received a "everything in my brain is just as it was 3 years ago, except that the lesion in my frontal lobe is smaller, and there is a new lesion in the pons", report.

That's okay. And if I understood this disease, or had a neuro that I could speak with, I'm sure that I would say it's great. In the moment of hearing the report, Jason and I were happy. My doctor is happy.

But I'm still worried. This means that the lesion assault on my brain is still there. Oodles of white marks, visible in a black and white photo of my brain. What are "they" doing? What have "they" been doing for the past 4 years? Are they just floating...waiting to all pounce and be reflected in my outward self all at the same time? Slowly nibbling away my myelin?

Well...it will be what it will be...right? The course can't be altered.

But I do think that I will stay on a DMD. I'm going to convince myself that it has been the Copaxone and the Rebif that have kept more of the fuzzy white spots away.

Emily

P.S. Jason, upon review of this post, has the answer to what the "white spots" have been doing... "They're pissing you off".