Remember That Time I Had MS?
This is a short story about the longest year. It’s the story of the year I was diagnosed with Multiple Sclerosis and then “cured.” Yes, there are quotation marks around “cure,” and if I were telling this story to your face I would make those smarmy little air quotes with my fingers just to prove that I am not a snake oil salesman. Person. Because if anything, this is a funny story, both funny strange and funny ha ha. Then again, my sense of humor has always been off.
Of course everyone knows that a story about a year is really a story about the lifetime leading up to it, and this is no different. I thought I had MS for 15 years or so, numb spots on my feet, hands, legs, the sensation of tightness around my torso. But my step-father had MS — no blood relation. So logically, realistically, not-fair-ically, I simply couldn’t have MS, too, right? (Spoiler alert: wrong.)
(See also: Trigger warning for Hypochondriacs. Because this is a case of just because you’re paranoid doesn’t mean someone isn’t out to get you. They got me.)
My family said I was sensitive. That I was just a sweet, empathic person who took on my step-father’s symptoms as his health rapidly declined. I went to regular doctors, even neurologists. They all agreed that I was anxious, stamped my medical record with a big fat diagnosis: HYPOCHONDRIASIS, sent me to therapy, psychiatry, prescribed me drugs to make me right in the head. Still my feet tingled.
So there I was with tingling feet. Fingertips. Sometimes I felt as if there was something in the front pocket of my jeans when there was nothing in there at all. Don’t even get me started on how many times I had to take off my bra in public because goddamn, surely that thing was a vise? With every symptom I felt crazier. Like a mantra, I would repeat to myself what the doctors had said. It’s not MS. I am healthy. It’s all in my head. And then I would stumble and hate myself for being such a freak that I could actually make myself feel symptoms. It became part of who I was…hypochondriac Susannah. Ha! Isn’t she a loveable mess of a girl?
Because timing is everything in a short story about the longest year, it was exactly one year ago today, 6 months after my mom died from cancer, 2 months after my step-father died from his MS, when I sat in yet another doctor’s office, this time for what I thought was a slipped disc in my back because stress, right? It had been a tough year, and I was certifiably anxious. This was the first and only doctor who ever ordered an MRI for me. The actual diagnosis came over the course of a few weeks, like a boyfriend who breaks up with you slowly because he thinks it won’t hurt as much, starting with let’s just rule it out…to we think it may be…to yes, you have MS and judging from your lesion load you have had MS for years now.
See? Funny right? Ha ha ha! Hysterical laughter. Yeah, I didn’t think so either.
Since then I’ve had to reinvent myself. That is, I was used to thinking I was anxious or so empathic-Indigo-child special that I took on my step-father’s symptoms, and now I know that none of that is true. I am not anxious or a loveable hypochondriac, but a maybe not-as-loveable woman who is always right. Because let the record state: I. Was. Right.
So what do you do when your biggest nightmare comes true?
You Google the hell out of it.
Which I did. On the bus. At work. In the bathroom and at night in bed. I was pissed off, angry, scared. I felt alone and fucked over, so I turned to the why why why of the www for answers. And this is what I found: Hematopoietic Stem Cell Transplantation for Multiple Sclerosis, HSCT for short.
Unfortunately, there are a lot of “why nots.” A lot of scams preying on hope, many of them involving stem cells because something about stem cells lends legitimacy to anything really. Too many stories of a friend-of-a-friend’s-cousin-heard-of-this-guy-who-cured-his-MS-with-the-fecal-matter-of-his-girlfriend’s-stem-cells. Totally. And believe me when I say I would eat anyone’s shit if it meant I no longer had MS.
I remember years ago I would go out to my mom’s mailbox and hear the buzzing of bees. My step-father was trying Bee Venom Therapy for his MS, and once a week the postman would deliver a padded envelope full of live bees. A stack of bills, bees and catalogs. At night my mom would use tweezers to pick up each bee to place on my step-father’s back so that it stung him. The stinger was then left in his skin for 15 minutes. 30 bees each night. Over 200 bee stings each week. Even though there has never been any formal studies looking at the long term efficacy or safety of Bee Venom Therapy, and no evidence to support any claims.
So when I say I turned to the internet I did it with the sound of bees buzzing in the background. From watching my step-father’s disease progress, I knew there was no cure for MS. But I also knew that I could not blindly trust whatever my doctors told me anymore.
When I was first diagnosed, the same neurologist who told me that I didn’t have MS years ago said that the best predictor for how things will go is to see how things have gone, i.e. because my symptoms so far have been mild I will probably maybe who knows be ok. Then he let me choose from a list of MS drugs all with alarming side effects, the most efficacious of which only boasts a 60% chance of slowing disease progression. You will pardon me if I did not feel adequately placated.
I took my new role of the maybe not-as loveable woman who is always right very seriously. I researched HSCT like a boss, read medical papers, articles in JAMA, pulled apart acronyms, deciphered stats, joined forums and boards, talked to people who had undergone the treatment successfully and some not so successfully, people who were planning on doing it. What I kept coming back to is that this is a procedure that has roughly a 72–80% chance of halting MS (as opposed to MS drugs that have up to a 60% chance of only slowing disease progression, but not of stopping it). Some patients report reversal of symptoms, but one of the reasons it is important to get HSCT done earlier in the disease is that this treatment does not repair damage. It stops progression. So while I am not sure if “cure” is the right word — semantics and all that cupping the word with quotation marks — it is the ONLY known way to stop the disease. So call it what you will; I called it a no-brainer.
What I soon found out is that there is no “snackable content” elevator pitch when telling people you are undergoing chemotherapy and you don’t even have cancer. The easiest explanation of HSCT is this: the patient has her stems cells removed via bone marrow aspiration or peripheral blood, then given high dose chemotherapy to destroy the immune system. Then the patient is given back her stem cells to re-set the immune system. Think of it like a re-boot of a computer, wiping the hard drive clean and starting over. The immune system has to learn all over again which things to fight (pathogens like bacteria and viruses) and which things to leave alone (the myelin sheath of the central nervous system).
I got more than a few blank stares, sad smiles from people thinking I was being taken by a scam. Strangely, what made people feel better about it was knowing that HSCT is currently in Phase III clinical trial in the US and expected to be FDA approved by 2022. In the meantime, the acceptance criteria is quite narrow. I was not accepted for the trial. However, there are many international hospitals and clinics that have been performing HSCT for auto-immune diseases for years: Germany, Italy, Mexico, Poland, Denmark, Canada, Norway, Singapore, Brazil, South Africa, Russia and Israel.
This is supposed to be a short story, so let’s skip ahead, shall we? On January 4th, I traveled to Tel Aviv, Israel for treatment at the International Center for Cell Therapy & Cancer Immunotherapy headed by Prof. Slavin, the man who pioneered the use of HSCT for MS. While there I underwent a bone marrow transplant with high dose chemotherapy, plus took a crash course in Israeli-Arab relations with a minor in I Still Don’t Get It. On February 5th I flew home.
Of course what you want to know — what we ALL want to know — is did it work?
The short answer is we may never know. That is, I have always been a read the last page first kind of person. So perhaps I should have told you up front that this is a short story about the longest year, but it’s a story without an ending. It’s the story of how I was diagnosed with Multiple Sclerosis and cured within the year, but what comes next is unknown. Sure, I feel great now. Phenomenal. My energy is back, blood counts are good, my hair is growing and I’m learning how to rock a pixie cut with a round face. But then?
I will get another MRI in a few months. Another a year after that. And so on and so on. I don’t know if I will ever not be looking over my shoulder at my disease coming back, if it ever left to begin with, but I do know this: I am writing this story now. And not only do I get to decide the genre, both funny ha ha and funny strange, but I also get to decide on how it ends. And right now, it’s just the beginning.