Teetering on the Edge of TRAP-MS

On my most recent trip to the NIH, I was hoping maybe I would be disqualified for the TRAP-MS study, which evaluates four existing FDA-approved medications for their potential to reverse progression in multiple sclerosis.  I don’t like that I have disease progression, and therefore qualify for the study. But if I am someone whose MS is progressing, I like the option of being first in line to take an FDA-approved medication that might help.

This was my second six month check-in to establish a baseline on my status with my new MS drug, Tecfidera.

Before I flew out, Dr. W, my NIH doctor, told me there was a  chance I’d test out of the trial, since I didn’t have much progression to medicate.  I wasn’t as optimistic about my lack of MS progression. My fall this January didn’t just fracture five bones in my face—it fractured all the routines I’d set up to live as healthily as I could with MS. I’d only just started going back to the gym. I hadn’t yet returned, wholeheartedly, to the Wahl’s-ish diet I’d been following.

During my summer exam, Dr. W had clucked at my balance— “your balance is shit”—and the lack of resistance in my right leg:—“so weak.” What would my balance be like after two months of not daring to challenge it? What would my strength be like after two months of barely any dog walks and zero visits to the gym? Thankfully, this setback didn’t prompt an MS relapse. But if there was going to be a time when my MS might be progressing, it would be now.

I’d been instructed to “take it easy” before my clinic visit. But that morning, I had pushed myself to the verge of immobility.

As I entered Building 10, my spirits rose.  Maybe it was the profusion of plants, or maybe the profusion of people. IMG_1374I noted there was new art on the wall.

IMG_1379

I noted there was still no additional entry in the display of Presidential Visits.

IMG_1380Luckily, the first appointment on my schedule was at Phlebotomy, which involved sitting, first in the waiting room, and then for the needle. That gave me some time to recover from all the walking I’d done through the airports, the Metro, and the NIH campus.

When my number was called, I got the same needle master as I’d drawn on my visit the previous summer. I recognized the fan letter he’d posted about his ability to make a two year old smile while drawing his blood.

IMG_1337 2The testimonial hangs strategically at eye level of the person waiting to get their blood drawn. It is terribly effective at arresting any impulse to cower or cringe. Nobody wants to come off as a bigger baby than a sick two year old.

Did I, like the sick two year old, leave smiling after having my blood drawn? I doubt it. I’ve not been known to smile until after I’ve had my second breakfast.  I soon discovered that my favorite cafeteria—on the second floor in the new building—was closed for remodeling. I found my way to the alternate cafeteria in the basement of the old building. I loaded up on greens and root veggies and proteins. The meal provided all the rejuvenation I needed. By the time I stepped off the elevator on the fifth floor and rounded into the clinic, I no longer had a limp.  Seeing Diane, a nurse I’ve known since my first NIH visit, put me in the mood to smile.

Since returning to real life after my big fall, I’ve become accustomed to being greeted with “Your face looks good!” If I chose to take “looks good” as meaning anything more than “not permanently damaged,” it is because I latch shamelessly onto the positive.

Diane obviously didn’t get the memo about the five facial fractures. Instead of saying, “Your face looks good!” she greeted me with a hug and a frank assessment. “We’re getting old!”

True enough! I, for one, don’t mind looking (or getting) old. I’ve earned my silver stripes. Besides, those strands provide an instant, socially acceptable explanation for a slow or unsteady gait. It’s not that I am MS closeted—it’s just that not every distressed person stuck behind me on the staircase really wants or needs an explanation of the ravages of autoimmune disease when an assumption about the ravages of age will do.

Diane didn’t look any older, and I told her so. Diane is remarkably stable. She just doesn’t change. Case in point: the day I met her, she had just won a prize in a weight-loss competition between nurses on her floor. Here’s the catch: Diane had won by losing a mere pound and a half.  If Diane has had any weight fluctuations since then, they have probably been within the same range. Diane has had the same haircut as long as I’ve known her: same bangs, same color, same length. Diane stays Diane. I wouldn’t want her any other way.

Jen, the other dear nurse I’ve bonded with from the start—swooped in to agree with Diane’s assessment, “We are getting old!” as she grazed my cheek with a kiss. Jen’s hair was red that afternoon—her hair is a new color, a new style, every time I see her. Jen tends to pretend she’s disorganized or absentminded or late. True to form, she crafted an overly-elaborate explanation for why she couldn’t linger as she dashed off down the hall on her sturdy Doc Martens.

Diane wondered aloud, “How long have you been coming here, anyway?”

I guessed, “Maybe nine or ten years.”

Diane pulled up my file.  “Since 2010. Nine years.”

When I’d first come to the NIH, I’d been chasing daclizumab, the only drug that had managed to stop my MS relapses.  After the NIH had requisitioned all the supplies of it, I was more than grateful that there was room in the trial of the drug for me. For the three years of that trial, Diane and Jen had taken my weight and my blood every month. Once that trial was over, I was permitted to continue to take daclizumab though the NIH “safety study” while we all waited for the FDA approval. I flew in every six months for monitoring and new drug supplies. Once the drug was approved, we took what may yet be a final group photo.

IMG_4207Thanks to TRAP-MS, we were back together again.

While Diane was at her computer, she got a notification on my labs. She scrolled down two screens of data.  “Your labs look good.”

I thanked her, and told her how, the last time I’d visited, I gotten my lab results on my phone just as I was about to get on my departing flight. The cholesterol was marked in red, and looked way high. I was freaking out that the diet I was on was going to give me a heart attack. Doctor Google hadn’t been much help.

“Stay away from Doctor Google. You should call us when you have a question.”

Diane scrolled up, “Your good cholesterol is what’s really high.”

Then Linh, one of the graduate students, stuck her head in the office. She was ready to give me my tests.

We started with the timed 25 foot walk. Considering I had been limping just an hour or so earlier, I wasn’t optimistic about the outcome. Still, I’ve been conditioned to give these tests my all, so when it was time to march from one masking tape line to the other, I barreled along the hall like I was on my way to lift a screaming baby out of a vat of boiling water. Then I turned around and barreled right back. My fear of falling paled in comparison to my fear of failing. I did not fall.

I announced, “My healthy appearance is a flimsy veneer.” Like the NIH don’t know that. Test by test, I went all out, competing with my better-rested summer self.

As Dr. W. examined me, she seemed gentler than last time. She didn’t push as hard for the resistance tests. She didn’t chide me for being weak. When I messed up on the heel-to-toe test, she let me re-take it. Twice. Not that I did any better.

Overall, Dr. W was enthusiastic about my condition. She told me maybe the rest I’d had was doing me some good. Or maybe the Tecfidera.

When Dr. W. called a few days later with the results of my visit, she assured me the MRI looked stable. She told me I’d actually performed better on some tests, like the peg test, than I ever have. But overall, my numbers still nudged a bit in the direction of progression. As long as there is a progression of my disease, I will continue to qualify for the study,

Dr. W wished me luck in getting disqualified from the study when she sees me next time in six months. As much as I love this crew, I would love to be too healthy to see them.

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Flummoxed (Part 4 of 4)

My friend Monica also has MS. She does not medicate. Which is not to say she does not treat her MS. Monica chooses her activities carefully. She exercises every day. She chooses her food carefully, following a Wahls-like diet, or what some of us call an auto-immune protocol. (AIP) Monica is also an exceptionally kind and gentle—non-inflammatory—person. (Am I implying MS is an expression of a personality defect? I hope not. I’m just observing that it’s hard to create a spark without any friction. Every life has friction. Monica seems to have a talent for not creating any friction, herself.) Monica never tries to talk me into living medication-free. I never try to talk her into taking medication. (I might have made a recommendation to take Singular, an allergy drug that has been shown in the lab to transform the brains of old rats into brains that function like young rats. But that’s for another post.)

When Monica texted to ask what our neurologist had to say about my rash, I wrote, “Z says he will support my decision even if I stop taking FDA approved drugs. But it’s such a tough call. If I’m wrong, and I get an exacerbation, I’ll blame myself. If overheating on this drug gives me an exacerbation, I will also blame myself.” I was perhaps exaggerating  (or as we as say in my family of origin, ‘over-exaggerating’) when I texted about the perils of overheating. Overheating merely creates pseudo-exacerbations, or transient worsening that last until the MS host cools off. Pseudo-exacerbations sure feel like the real thing, but they don’t bring on permanent damage (as far as we know.)  You see how Monica and I are opposites? Even after years of daily work to mellow out, I still have a tremendous talent for creating friction out of thin air.

Monica texted, “Yes, it’s a tough decision. Think we should decide not to blame ourselves either way. I will always support you, wwld* :)”

*wwld is of course short-hand for what would Lisa do? Feel free to sprinkle this liberally all over the internet, like lesions on an MS MRI.

Note that when I texted that I’d decided to drop the Tecfidera, Monica didn’t text back, “told ‘ya so,” or “welcome to revolution against rapacious Big Pharma” or anything. The Lisa she knows is a much better person than Ms. Lab Rat.

Her sweet response was not at all surprising. I didn’t expect to get any guff from Monica. The guff, when I got it, came from an entirely unexpected quarter.

 

 

 

Flummoxed (Part 3 of ?)

I get a phone call from my youngest sister, PYT, a.k.a. Pretty Young Thing, just as I am flopping down in the driver’s seat after a lightweight workout with my toys at the gym.

PYT has three Young kids, four and under, who are competing with me for her attention. I win. Intermittently.

I tell her I’ve capitulated. I’m taking my new MS drug just as the doctor ordered, thirty minutes after an aspirin. “I splurged and got myself the kiddie kind.”

“The orange ones? The chewables? The ones that taste like mom loves you and everything is going to be OK?”

“Exactly.” Oh, it is great to talk to someone who knows precisely what the aspirin summons—not only the specific taste, but the specific aura our mother would convey while doling it out.

Now that I take Tecfidera after an aspirin, and a meal with a bit of fatty food—I love my avocado, I love my coconut milk—I don’t get a rash. Or an allergic reaction. Whichever. Dr. Z. had warned me it might take weeks for the rash to stop flaring up. The rash had stopped immediately.

And yet. I don’t trust the lack of rash. You know those times when your room is a mess and your mom has threatened to inspect and you shove all your miscellaneous underwear and books and socks and chewed pencils under your bed, and it’s still a mess but it’s a hidden mess? Well, PYT and I never did that. The hidden mess was our middle sister’s speciality.  (She’s the pragmatist of us three.)  Our  messes were always flagrant—out in the open. And no, we never got points for honesty. But we’d always thought we ought to. Go ahead, roll your eyes. This is not a sentiment I’m proud of.

Am I the same person now? Hell, no. I suspect I’m not the only person with MS passing (less and less often) in public as able-bodied while actively concealing I’m a total hidden mess.

PYT knows me, the past me, the one who’d railed against the hidden mess. She gets my reservation that maybe taking the aspirin is just the same as shoving a mess under the bed. Does the aspirin genuinely alleviate my body’s resistance to the drug, or does it just push the resistance under the surface, where it can’t be seen?

We ponder this distinction as my four year old nephew explores the new paint he’s created by reconstituting dried out markers and as his twin sister mixes that paint with an entirely unacceptable color and as their younger brother decides it’s time to pee.

We wonder if the new drug is even worth it, given the conclusion of the meta-analysis of over 28,000 MS patients from 38 clinical trials that most current DMTs (Disease Modifying Treatments) are fairly useless for the average patient by the time they reach my age. We ponder Dr. Z’s point that I might be an “outlier” — which sounds kind of cool — unless “outlier” means that without drugs I might be the one to get hit with an exacerbation that could permanently disable me further. His distress over this possibility is nothing to dismiss. I’ve looked around his waiting room. Not everyone with MS has the luxury of describing themselves as a hidden mess.

I share the latest conclusion about the three types of MS—which is that relapsing/remitting, secondary progressive, and primary progressive MS are not three different diseases, but rather, three phases of the same disease. The FDA approved DMTs may prevent relapses, but do nothing for other processes known as “compartmentalized inflammation,” which do not show up on MRI’s.  These are the messes under the bed, so to speak. Or more specifically, the messes inside the cells.

We speculate that maybe all those years I had credited Zinbryta for stopping my MS attacks, the change could have really been more of function of my slipping insidiously from relapsing remitting MS into a more progressive phase of a disease, where the breakdown can’t be detected by the MRI, but rather, by the lumbar puncture.

“It’s like a vicious dog that hasn’t bit anyone in twelve years on a muzzle, and I’ve credited the muzzle. But maybe the dog has just mellowed out with age.”

PYT chimes in, “And maybe the muzzle has been annoying for the poor dog.”

PYT and I are both dog lovers. We aren’t fond of muzzles.

I say, “Maybe we just have to be realistic about my MS. It’s a progressive disease. Slowly but steadily, I’ve been progressing. The drugs that work to stop relapsing remitting MS can’t do a thing about the kind of progression I’m experiencing inside my cells. Maybe it’s time to stop fooling ourselves by my taking a drug that only helps for an early stage of MS. I might be way past that phase.”

PYT says, “It sounds to me like you have taken your last Tecfidera.”

My flummoxed feeling is lifting. I starting to feel like myself again. (Talking with a sister will do that.) I share the last thing Dr. Z. said to me, “I will support you even if you don’t want to take any medication.”

His unconditional support means so much. PYT warns me that our mother and my husband will resist my urge to give up the medication. “As they should. They love you. They want to protect you.”

Protect…me? When we were growing up, I never cast myself as the damsel in distress. But that’s the role MS has forced me to play my entire adult life.

 

 

 

MS Blog with Boob Pic

Ms. Lab Rat is supposed to be a blog about an intrepid gal who joins clinical trial after clinical trial, surfing on the cutting edge of multiple sclerosis research.
Ms. Lab Rat is not supposed to be a blog about an anxious gal whose left breast is on the cutting edge of a surgical scalpel. But that’s where this MS blogger will be, while The Art Academy is closed for Spring Break.
Sorry.
(I know, I know, I shouldn’t be the one saying sorry. But have you have ever met a person who did not apologize for a physical misfortune beyond their control, be it mild hearing loss, Sorry, could you repeat that?—to terminal cancer, I’m so sorry I won’t live to see my baby graduate high school. You want to say: I’m the one who’s sorry.)
In this case, Gentle Reader, you needn’t be sorry for Ms. Lab Rat—yet. I have health insurance. (Thanks, husband.) I have a support system in place. (Thanks husband/family/friends.) And I don’t have cancer. (As far as the pathologists can tell.)
What I do have are a few cells that kind of look like they could turn into cancer…or look like the type of cells that tend to hang out with cancer cells. The pathologists couldn’t really agree on what to make of these suspicious cells. Which was why it took them a week, and not the promised one to three days, to call me.
As it happened, I got this call just two hours after I’d learned I have severe osteoporosis, and just a half an hour before I was scheduled to teach Artist as Reader. I was in the middle of an enormous copy job, which involved making 17 two-sided copies of the 92 page screenplay of Get Out. The call made me laugh. Two bad health updates in two hours? Who gets that? It seemed too bad to be true. My biggest fear remained the complicated copy job. I really really hate copier jams, especially so close to class time. Trivial frustrations like that are somehow harder for me to take then even super grim news. The printer didn’t jam. I was genuinely relieved, and genuinely curious to see what my students would think of the manuscript. I couldn’t be bothered to update my blog post about my osteoporosis diagnosis with a dramatic PS. I had a class to teach. Besides, my mom reads my blog. (Hi, Mom!) I didn’t want to worry her.
I am now scheduled for a third biopsy, a surgical excision that will scoop out the entire perplexing nodule and resolve any unanswered question. I’ll be glad to be rid of the uncertainty. I’m not yet skilled at living with anxiety. Last night, I had a hard time getting back to sleep after my 4th or 5th fourth trip to the bathroom (thank you, MS bladder.) I tried meditation after meditation, but stayed awake from 2am to almost 4. (I fell asleep just fine after trips seven and six.) OK, maybe it’s time to botox the old bladder again. Do you see how living with MS is in itself a full time job?
I was grateful to have yoga today, to help me unwind and expand, physically and mentally. As I had hoped, I was not the only student at this week’s class for yoga with MS and Parkinson’s. I met two intelligent, ambitious women there, an accomplished artist and an accomplished writer, and best of all, I got to catch up with my buddy Monica. We lingered over our Wahls-compliant lunches to chat about breast biopsies, and so much more. In a few short weeks, we’ll have matching scars.
It seems no MS story is as simple as just one diagnosis. At least, not for those of us lucky enough to be living decades with MS—long enough to encounter the usual trials of mere aging. Maybe Ms. Lab Rat is a typical MS blog, after all.

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My Take on Wahls

This afternoon I got an email from Kathy Reagan Young, from the FUMS Podcast Show. 

She wrote: I’m preparing to interview Dr. Wahls about the Wahls Protocol vs. the Swank Diet and I wondered how you’re feeling now (after your gallbladder attack) and how you feel about the Wahls Protocol now?

This was my reply: “I think the Swank Diet is an improvement on the Standard American Diet of mostly processed foods, but I suspect the lack of fats  does harm as well as good. My fatigue levels went up, not down, with Swank. When I turned to the study dietician for help on micro-tuning my diet so I could stay within Swank’s parameters, while remaining true to my goal of optimal health, she told me she’d have to check with Dr. Wahls first. When she got back to (me) she told me Dr. Wahls forbid her from making suggestions. My main motivation for joining the diet trial, instead of pursuing a diet independently, was to get coaching from the dietician. I suspect only those assigned the Wahls Diet got such coaching. This disparity is unethical in a clinical trial. If Dr. Wahls feels her diet can be proven objectively, she should have stayed away from having any say on the trial, and let it be proven independently. As that was going on, I got an email from Dr. Wahls promoting her daughter’s Go Fund Me site. I found that…distasteful.

Since the diet study, I have been following a modified, lower fat version of the Wahls Diet, reintroducing coconut oil and ghee very gradually, which is, I believe, what she herself (or her dietician)  would council. I wish I could tell you I’m feeling better already, but I am only a few weeks in. Last week I got hit with a diagnosis of severe osteoporosis, and on the same day I got told I had to get a second mammogram. I have a calcified lump on my breast that is getting biopsied tomorrow, so MS may turn out to be the least of my troubles. A good diet, a smart diet, is necessary, even if it’s not sufficient. We all die.
I believe Dr. Wahls has presented the world with a very smart diet. I also believe she is a flawed person. Just like you. Just like me.”
I’l be the first to admit that reply was a bit  melodramatic. I very much doubt I am going to die from this calcified lump. But I will die of something. And I will age. And likely, no matter how well I eat, no matter how hard I try to exercise, no matter how doctors I see, or clinical trials I  join…my MS will progress.

In her book, Dr. Wahls urges her Wahls Warriors to take a selfie before starting on her diet, so they can look back and see how they will “youthen” instead of age. I felt sorry for Dr. Wahls when I read that.  She, too, is going to age, she’s going to die…and she may very well progress. If she does, she’ll feel incredible pressure to hide it. I feel that pressure, every day, and I haven’t summoned a vast movement of “Lab Rat Warriors” to validate my dance with this disease. I’m sorry I’m being hard on her. She’d doing the best she can. I’m doing the best I can. I just refuse to be a Wahls Warrior.

 

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Breakfast Break: MS Style (part 4 of Ms. Lab Rat’s Latest NIH Adventure)

When we last left off, I, Ms. Lab Rat, was sniffing the sickly scent of powdered sugar as I passed the by-now stale gingerbread houses on display in the secular cathedral that is the NIH (National Institutes of Health.) I had time to kill before my Phlebotomy appointment, so I took the elevator to the second floor cafeteria, which has an excellent salad bar. And discovered I was too early for salad.

Here’s the deal with my new Wahls-inspired MS diet: the foods I used to associate with breakfast are off the menu. No processed foods, no gluten, no grains, no milk (bye bye breakfast cereals,) no eggs, no cheese (bye bye omelets.)

Here is a picture of what breakfast looked like for me today: IMG_9271

You’re looking at bok choy and garlic escargot simmered in homemade chicken broth, topped with kimchi and dulce. The Wahls Diet calls for the consumption of four servings of leafy green veggies a day, at least four servings of colorful fruits and veggies, a meat, a touch of seaweed, a bit of something pickled. The Wahls Diet is also very very big on homemade bone broth. So this breakfast covers pretty much all the bases. (If I were a true purest, there would have been a little knob of organ meat floating around in the bowl, too. But that’s the thing about the Wahls diet. Or maybe any diet? You can always feel you’re not quite up to par.) This breakfast was yummy, by the way. But this kind of breakfast is not easily obtained on the road. Not even in a hospital. (By the way, what’s up with hospital food? Why are there so many unhealthy choices? Topic for another blog.)

Here’s a fuller, indeed cluttered picture of what breakfast looked like for me today, when I tell the whole complicated story of my MS maintenance:

IMG_9272

You are still looking at my pretty bowl of healthier-than-thou breakfast food. You are also looking at the supplements required for the clinical trial of the Wahls Diet:

5,000 IU Vitamin D3, 1 t cod liver oil, 5000 liquid vitamin B12, 1 mg folate, multi-vitamin.

Then there’s all the stuff I have to take for my funny bladder:

AZO, macrobid, and some other antibiotic I’ll be finished with at dinner.

Then all the stuff I choose to take for my self-designed Ms Lab Rat trial:

3x 100 mg Biotin (which I am hoping will eventually fix my bladder problems and get rid of three of the items above), 500 mg Hemp oil, local hemp oil, glorious hemp oil (which has helped me sleep and dream after many sleepscarce, dreamless years), 5 mg Lithium (which I thought was doing a fine job as a mood stabilizer, though I just learned that what I take isn’t anything like a mood stabilizing dose. So let’s call it my placebo.)

This is a lot to keep track of. When I graduated from the Swank Vs. Wahls clinical trial, I got a certificate (no joke) and a private viewing of a 20 minute video of Dr. Wahls that just served to delay the seven hour drive ahead of me. No t-shirt. The only remotely useful thing I left with was a booklet to help me keep up with all the details of living in a Wahls Diet world. (I had rallied hard for an app, but there isn’t one. Yet.)  For a few weeks afterward, I kept filling in little circles every time I popped another supplement, or finished another serving of leafy greens. But eventually I ditched the booklet. I want to feel a little less obsessive, a little less persnickety. Either that, or I’d already assimilated all the expectations. My brain had become the diet app I’d been asking for.

The morning of my TRAP trial, I realized I was not going to get a Wahls breakfast, or Wahls-ish breakfast before my blood draw. I guzzled a “green” drink I purchased from a vending machine and took the elevator down to Phlebotomy. A lovely woman handed me a white stub with a number. As I glanced down to read 32, she called, “Thirty two.” It was the Christmas holiday. I was the only patient in the waiting room. I filed past untouched trays of cookies and two pots of coffee and entered the orderly hive of numbered white cubicles, wondering if I’d recognize my phlebotomist. I had been there many times before.

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