Health Update: It’s Not a Tumor, or MS

I’ve given the update on various places in social media, sent emails and texts, but I’m here to give a full story recap, let’s start with the lead. I do not have MS. My MRI is beautiful. Brain is entirely there, amazingly enough, unmarred and unscathed. I do not have abnormal blood work, funky thyroid, or a whole list of weird things they tested for. My EMG tests are “unremarkable.” Myasthenia gravis is still on the table, but I don’t think anyone’s heart is in it. They’re about to send me to Mayo to evaluate muscle weakness.

But mostly:



Now. Some of you are new to this horse and pony show and are saying, “But what is it?”

Oh honey. I haven’t had an answer in ten years, and my first one that came close was “horrible things or no thing.” We don’t get pretty things like answers, not around here.

What I do know is there does seem to be something SIGNIFICANT to cutting gluten and amping up the veg quotient. I am still a drunkard when I walk. I still twitch occasionally, more so when I’m tired. I still have vague and varying degrees of TENS-unit sensation in my legs, especially my feet, even when I’ve not been on them at all.  My chiropractor has done more with the neurologists’ test than they have. They very clearly are ticking off boxes, and when I don’t fit, they blink at me and say, “Well, I guess it’s not neurological.”

My chiropractor raises his eyebrows, consults colleagues, and uses my anecdotes of what their tests showed to hunt things down and discover that my entire left side has a kind of muted function, something related to my left cerebellum which, uh, kinda sounds neurological. Today we discovered that everything on my left side can’t keep up with the right, and where I’m adept and fluid on the right I am clunky and hesitant on the left. He gave me exercises to stimulate the left side, to try and boost the signal and give the over-functioning right side a break. I am currently walking around the house with one sock on my right foot and nothing on my left, so it’s feeling the floor more strongly. I stop occasionally to make figure eights with my left, making it practice being coordinated. When I go get a massage next, I’m going to tell her to focus more on the left side than the right.

In November I go to my allergist, by that point I can say, “This is how much I changed after a month and a half without gluten.” It will take a few months to get into Mayo, but by the time I do I can say, “Well, this is what my chiro did, and this is what the diet seemed to do,” and anything else that comes up along the way. And hopefully they give me an answer without completely and utterly bankrupting us.

Between then and now, I’m keeping on. I have some  processing coming, I think: out of the corner of my eye I’m aware that if the GF diet keeps doing what it should, I will start doing a lot of mourning as I see foods I can’t have. There’s some banked anger I’m due for all the shit I’ve had to cut out and how limited my food world has become, but I just cannot even right now, not yet. To soothe my own concern and my husband’s over how the hell will I be able to eat on the road, I rented a car in Atlanta so I can buzz up the street to Whole Foods or over to Chipolte or whatever trips my fancy at the moment/I have time for. I’m already planning the great Cullinan gluten free cookie/holiday party for all my freaky foodie friends. But there’s frustration and sadness in my future.

The good news is that I think now maybe Damon doesn’t have to decide which one of the GRL days he wants me functional, Tuesday or Wednesday, and I might actually be able to dance a wee bit as Calvin Fine, as long as the lovely ladies and fine fellows are willing to spot me in case my legs decide to shut off or my center of balance fucks over.  I probably am not going to be putting on running shoes or even biking anytime soon, but I do feel like I could maybe spend the day cleaning the house and not collapse in a painful heap after. I don’t think I’m ready for non-clunky orthopedic shoes, but I have begun to be a little more hopeful for a possible pair of pumps for a few hours at RT in May. Maybe. Absolutely though for the first time in  a year I’m not preparing for a conference wondering how I will blow out or how much I have to swallow pain and hope no one notices I’m stepping on knives every time I move.

I guess overall I feel cautiously hopeful. I’m not putting my faith in anything specific but neither am I being pessimistic. I’m not ready to just say, “Oh, gosh, I sure hope going vegan and gluten free keeps working.” I’ll keep watching and assessing until I feel 100% normal—for more than six months.  Even then I’d probably always have one ear to the ground, making sure things are okay. If  keep feeling good, if I eat gluten free vegan and don’t feel sick afterward, if I can feel my legs and walk and be normal except for the freaky eater part, I’ll consider it a trade off.

That’s all the update I have for now. But overall it’s pretty good.

I would like to thank again everyone who wrote, texted, called, emailed, messaged, commented—I have been drowning in people showing love and support and concern, offering to help (why, though did you all offer to clean? It was weirdly universal.) and being there in so many different ways. Last night before bed I had a barrage of texts and emails, and this morning I had more of the same, and more this afternoon. Some of you are people I haven’t really spoken to in a long time. It’s the one good thing out of all this, being reminded of how many people care. Sometimes it’s easy to forget. Not this  past week. Thank you very, very much, and I love you right back.

It’ll be awhile before there’s another update, because there’s not much to do but keep eating kale and not eating gluten and making figure 8s with my left arm while tapping my bare left foot. Wait for appointments, wait for results or lack thereof. I have been to THIS rodeo a lot, though. I totally know how to ride.

11 Comments on “Health Update: It’s Not a Tumor, or MS

  1. I’m so sorry you still don’t have real answers yet, but so glad you (and your team) have been able to rule out some really nasty stuff! Big hugs to you and your family!

  2. Hugs and best wishes for the next couple of months dude, I’m so glad you can discount a whole bunch of stuff. 🙂

  3. Hugs, hon! And seriously, if you need anything during GRL, you’re going to be busy even with the rental car, so don’t hesitate to ask. I’ll send my husband to run errands. 😉 (Actually he likes feeling useful so I probably would send him and he’d be happy to go.)

  4. Hi Heidi,

    I have myasthenia gravis, so if you want to drop me an email, I’d be more than happy to chat about it. What you’re going thru sounds really familiar. Not entirely, but certain things. alyssa (at)

    Alyssa 🙂

  5. I have lots of great Christmas cookie recipes that are GF and dairy free. I’ll try to remember to bring you some to GRL. I know how hard it is to take stuff out of your diet. ((((Hugs)))))

  6. On the bright side–KALE! I love Kale. ‘Course if you eat it by the bucket loads, it’ll get tiresome too, I suppose. Seriously though, sending you good thoughts and hope for answers and better days ahead!

  7. Glad to hear it’s not MS, but sorry that you don’t have a diagnosis. My friend Gayle ended up going to Mayo Clinic, due to mysterious stomach issues just a few weeks ago. Doctors in Des Moines were unable to diagnose her. She loved Mayo Clinic– excellent doctors and excellent care. Sorry it has come to that, but I think you will get answers there.

  8. You must be so relieved. However, I bet you’re also frustrated that they didn’t say: yes, we know what t is, and we can mend it.

    I commented before. Do you know of they checked for sarcoidosis? I expect they did, but I urge you to check!

    All the best.

    • They’ve checked all kinds of things. If the gluten doesn’t take care of things over the next few months, I’ll be going to the Mayo Clinic in Minnesota, where they’ll check everything under the sun. You don’t leave there until you have hard answers.

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