Why Do I Always Opt to Join the Trial?

You can always rely on me — to join a clinical trial. If there’s a choice, say, between starting an MS diet and starting a clinical trial of an MS diet, I’ll opt to join the clinical trial. (I still regret that diet trial.)

When Dr. W told me I’d have to stay on an MS drug to be part of the TRAP trial, I didn’t consider dropping the TRAP trial. I went right back on Tecfidera with nary a reservation. I was finished with being flummoxed. My reservations about Tecfidera were suddenly forgotten—like my initial reservations about the TRAP trial.

When I’d first seen the letter from the NIH addressed to me as a candidate for the TRAP trial, I’d thought — no, hoped — they had sent it to the wrong person. Because this was a trial for people with progressive MS. I didn’t have progressive MS. I had the sportier version of MS—relapsing/remitting—and I hadn’t relapsed in years. I was a success story. Wasn’t I?

At that point, I had just joined the Wahls Diet trial. I intended to eat my way out of MS. And of course, since I was doing this dieting through a clinical trial, and not through a cookbook, this meant the outside world, including the NIH, would benefit from the data I’d contribute as I healed myself, one cup of veggies, one sprig of seaweed, at a time.

Well, over one thousand cups of veggies later, I have come to accept that I have progressive MS. This doesn’t mean what I’d thought it meant. Apparently I can still pass as able-bodied. (I got some affirmation just an hour ago, when my husband and I were out walking our dogs and a neighbor made some comment about my power-walking with my trekking poles. She and her husband were genuinely surprised/alarmed when I told them I was using those poles because I have MS.)

The progression of my MS might still be invisible on the outside, but MRIs detect gradually worsening brain atrophy. Lumbar punctures detect the breakdown of the mitochondria in my cells. I detect, in a myriad of subtle ways, that I am moving with greater difficulty through the world.

Current MS medications address one aspect of MS — they are measured in their ability to prevent relapse. They do nothing to address the brain atrophy and cellular damage that accrues over the years. The researchers at the NIH want to address all aspects of MS. The TRAP trial looks at four medications that might work to supplement the treatments that are already out there. Pioglitazone, Montelukast, Hydroxychloroquine, and Losartan have already been FDA approved for other diseases, and may have properties that could assist against MS.

In the future, MS patients may take multiple drugs instead of just one, much as AIDS patients do today. And while I am not jumping up and down for joy at the idea of us MS patients adding more drug burden to our already overtaxed bodies, I am even less willing to add more disease burden to my already overtaxed central nervous system. If I need to take an MS drug to be a part of the TRAP trial, I’m willing to stick with Tecfidera. The drug I’d be paired with, Montelukast, aka Singulair, has been shown to rejuvenate the brains of old rats in clinical trials. This old Lab Rat wants to give it a try. I could use some rejuvenation.

The funny thing is, I don’t have to rejoin the trial to take Montelukast. I could go to my GP, who likes me well enough, complain of a runny nose, and get prescription for Singulair. With the NIH out of the loop, I could skip taking Tecfidera, not to mention all those MRI’s. I could do my own brain hack.

Why don’t I? The same reason I don’t do my own plumbing. I need the best minds I can find to keep me out of deep shit.

In this trial, the researchers are going to see if they can get the same cellular information from tears as they do from spinal fluid. No more lumbar punctures? Now that’s progress—the good kind.

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3 thoughts on “Why Do I Always Opt to Join the Trial?

  1. It is really cool of you to be in a trial and publicize it so we all benefit: Thank You.

    What was your main regrets of the diet study, that you ate so much wheat and dairy and so little good fat you got sick? Or that it didn’t seem fair? Or?

    I’m in a clinical trial for processing speed at the moment. I think I’m in the part that is just playing computer games, not the part that is teaching our brains to think faster, but, I’ll let you know. However, it is really cool and I wanted to let you know about it so you know there is this non-drug clinical trial for MS cognition:

    Transcranial direct-current stimulation, or tDCS-
    https://www.prnewswire.com/news-releases/transcranial-direct-current-stimulation-combined-with-computer-games-at-home-reduces-cognitive-symptoms-of-multiple-sclerosis-300411078.html
    (this trial is at NYU Multiple Sclerosis Comprehensive Care Center, it is running elsewhere in NJ also)

    There is also this other non-drug trial for cognition and MS that describes itself as: “Glucose (a type of sugar) is used to fuel the cells of the healthy brain. For people with neurological conditions such as MS, glucose is not converted into energy as efficiently as it would be in a healthy brain, which can lead to a decrease in cognitive function. Caprylic Triglyceride may work to bypass this problem by providing an alternative energy source that is metabolized in the liver and used by the brain.” https://clinicaltrials.gov/ct2/show/NCT01848327
    Your super doc may already know the results of this trial but I don’t because they aren’t published yet.

    1. Thanks for the link! I wouldn’t be eligible for that trial because I am also hypothyroid. (That’s my easy chronic illness.) My life experience supports their supposition that those of us with MS don’t process sugars in the same way as everybody else. I’m actually doing a lot better now that I’m eating high fat/low carbs. The resulting state of ketosis changes the way the body processes sugars. It works for me. There’s no going back, or even for a short detour. Last night I drank a gin and tonic and those sugars wrecked havoc. I’ll have to jump back on the wagon and say no to alcohol again and not worry that everyone thinks I don’t let myself have a good time. When your body goes out of whack, it is not a good time.

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