I'm just going to assume things are possible

Alright then, I'm stepping out with hope: I've created my GoFundMe account so that I can start fundraising. Hey, who knows? My July MRI will most likely show active lesions (if the tingly skin, "MS hug" and random numbness are any indication) so that gives me a little more time on the '2 relapses in 12 months' time clock. And hey, maybe some wealthy person who likes to surf random blogs in the middle of the night will stumble on my page, be delighted by my tone and decide to donate big stacks of cash. Weirder things have happened, right?

Well, time for some tough math

                Like any medical trial, the HSCT study at Northwestern has prerequisites. Among other things, participants have to have tried some of the disease modifying drugs without success (these are Copaxone, Avonex, Tysabri, Tecfidera, Gilenya, etc. The big scary drugs that people with MS have to take to keep their immune system from eating the fatty myelin sheath around their precious, precious nerves). This qualifier was easy: I’ve done four different DMD’s over the ten years I have had this lovely disease. So, check!

                The next qualifier is that you have to have had at least two relapses requiring steroids in the past twelve months. This also works for me, at the moment, as I had two relapses last summer, both requiring steroids and a trip to the hospital. Check!

                So basically, if I had sacks of cash right this minute, I could go to Chicago and go through this process. I meet the criteria to be evaluated for the trial. Of course, I don’t have sacks of cash, or insurance that is willing to cover any of the costs. This means that fundraising is a necessary part of this whole thing, as I believe I’ve mentioned.

                But I started doing some math in my head, and there is a big honking flaw: My plan was to fundraise and reapply in January with better insurance to lower the overall cost from almost $200,000 to $50,000. Still a massive number, but obviously $50k is a quarter of what it would cost without support from health insurance. Okay, so far so good. Big number, but doable. And then it hit me: I’d have to have two more relapses in the next six months to qualify again in January.

                That’s right. Even though I have had relapses in the past that have nearly killed me, and even though the ones last year caused seizures that crippled the right side of my body for months, if I don’t have more attacks this year I just won’t qualify come 2016.

                What does that mean? It means that even if I were able to raise the money, unless I get worse this year, it might not matter. What do I do? I have options, of course, we all do, even if they aren’t particularly good ones. Option 1: I can go off my meds entirely and court a relapse. I’ve already got a few of the smaller symptoms, it probably wouldn’t take much to push me into exacerbation territory. But that feels irresponsible with one income, two small children and myself a full time student looking to graduate next summer. I don’t have the time, the money or the support system to have a relapse right now. Not to mention, there is no guarantee when you have a relapse that those symptoms will go away with steroids. How dumb would I feel if I went off my meds, had a relapse and lost my legs? Just too big a gamble to take. Though honestly, as I type this three of the fingers on my left hand are numb, so I'm pretty sure if I had an MRI right now it would show activity.

                Option 2: Keep taking the Tecfidera (my current DMD) and find out how long I can fundraise. Can I just raise funds for the next two years and reapply if and when I have the relapses necessary? Will the study even still be there? Is this process ever going to be just an approved treatment option instead of a trial? Should I put my focus on trying to rally support for approval from the FDA?

                I just don’t know. It’s a lot to think about. Input is appreciated. What are your thoughts? What would you do?

   
  This is the man with the plan: Dr. Richard Burt. This short interview gives a helpful overview of the HSCT process and how it can help not only people with RRMS, but also folks with other autoimmune diseases such as Crohn's disease, scleroderma and chronic inflammatory demyelinating polyneuropathy (CIPD).

It begins!

        Hello world! It's great to meet you. Let me tell you a little bit about why I'm here.

        Ten years ago last month I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). At the time I was newly married, had just finished my first semester at Agnes Scott College and had law school in my sights. I worked at the front desk of a spa, which as luck would have it was two doors down from an optometrist. This is important because when I noticed a grey spot in the center of my field of vision in January of 2005, a spot that was growing by the day, I walked the two doors over on my lunch break and asked the receptionist if the doctor could fit me in. Thirty minutes later I left the optometrist's office with a referral to a neuro-ophthalmologist, who would eventually send me to the neurologist who would find the tell-tale lesions on my brain.

        The decade in between that day and this one have been eventful. I pushed forward with a different career path, choosing the nonprofit sector and service in AmeriCorps instead of the law. I became a mother. Buried my own. Became a mother again. Throughout I worked in nonprofit management, serving as the Director of Operations for a local organization that served women in crisis. I took my medicine, pushed through the discomfort and tried to accept the idea that the limits MS placed on me were mine forever. I got really, really good at feeling like crap without showing it.

        MS is like someone playing Disability Drop Darts above your head, with random symptoms presenting themselves depending on which part of your grey matter your immune system is shredding that day. Stress is a trigger, as is heat, infection and who knows what else. It has been like living under the gun, roulette style, waiting for the relapse that takes my mobility for good this time, or my ability to pee without self catheterizing, or walk across the room without having a seizure. Every time I have a relapse most of the symptoms recede with steroids. But I live in fear of the day they don't.

       So that's my MS Story thus far, but now there is some hope on the horizon: HSCT, or hematopoietic stem cell transplant, is offering the closest thing to a cure we've heard of yet. At Northwestern Memorial Hospital, Dr. Richard Burt has been running a trial for the past 14 years that is providing hope to MS sufferers all over the world. The process is long and grueling, not for the faint at heart, but if it works? If it works it's a second chance. Currently they have a success rate of over 80%, meaning that after 5 years, over 80% of trial participants are relapse free without any disease modifying drugs necessary. No more shots. No more pills. No more crazy side effects and tremendous expense. No more rolling the dice that the treatment won't kill you. Just...life.

        I have to tell you, world, the idea of that kind of freedom makes me giddy. I want that life for myself and for my family. To that end, I have started the process of sharing my story and raising funds for this amazing, groundbreaking, life-altering-yet-so-very-cost-prohibitive treatment. Even with insurance, the cost for the 8 week treatment and related expenses will be $50,000. This is a huge sum, and entirely out of my reach, though it is still less than the cost of only one year of the disease modifying drugs prescribed to people with RRMS.  I am turning to my community and beyond to try and make my MS Eviction possible. Please stay tuned, and thank you for your interest!