I’m looking at three doors. I venture through one, and three more appear. Then three more, and three more. The light is dim. The doors are white. White like lab coats. Nothing but white doors.
And then the ticking starts. Tick. Tick. Tick. I can’t get it out of my head now. This clock ticking. Doors opening and closing. My anxiety builds. I’m frantic. I am afraid.
Then I wake up. But this is no dream. This is the story of my year-long search for a treatment, a disease-modifying therapy that will halt or at least slow this inexorable disease.
It’s gone like this: First, discover last summer new lesions on my frontal lobe while taking the drug Techfidera. Then wait half the year to go back on Tysabri, the powerful drug that had worked for me before. Next, learn that Tysabri has a one-in-76 chance of killing me. Decide on Rituximab, only to find that insurance won’t cover it because it has no formal indication for MS. All the while, my body is failing and the clock is ticking. I am and have been wide open to this disease for almost a year.
But behind another door are the promising new stem cell trials. Doctors are actually using the word “cure” relating to these. But not for me. My neurologist carefully explained that all of the experience from the successful US and Canadian studies points to one conclusion for patients with my presentation: I would go through a traumatic and expensive four month process, risk my life be having my immune system wiped out and rebuilt, and for all this would almost certainly see no improvement. This is mostly because I have had the diseases too long, and in its current state it is not progressing through frequent lesions.
I sat in the doctor’s office despondent. They had never seen me so down, prompting the OT to remind me that many people enjoy very fulfilling lives in wheelchairs and urging me to schedule a PT appointment to consider more options for a chair that I could use inside the house. Ashamed, I said I would go, though it was the last thing I wanted to face right now.
Later, the neurologist texted me that she had forgotten to mention another less drastic method with stem cells being done in Chicago. I read the article, and here is what it had to say about the likes of me – those secondary progressive MS and for more than 10 years. No stem cells for me under current protocols. I missed the stem cell train by just a couple of cars it seems. Adding insult to injury, things were beginning to look like I would have to wait maybe as much as a year for a new drug to guard against further attacks.
Then the next day came the unbelievable news that the insurer had granted my appeal and would in fact pay for Rituximab, the “arthritis” drug which should have been indicated for MS years ago. Like Tysabri, it should protect against new lesions like the ones I learned of last summer. It also may have beneficial effects by calming inflammation.
As I was leaving after my first infusion, I also noticed a talk being given about drugs that will remyelinate or regrow damaged myelin, presenting the possibly of improvement in symptoms. Onward to six hour long Rituximab infusions, two done for now, two more in six months. With a disease modifying therapy and a dash of long-term hope for improvement, I’ll take it.