Transverse Myelitis: The Culprit Was Coxsackie

Quick update following a neurologist appointment again today.

Earlier in the week, I experienced some new sypmtoms related to the myelitis and/or the medications I've been taking, so I had another appointment today to get those checked out and try to determine whether there was new lesion activity going on.

The symptoms that showed up were some fuzzy issues with my vision, a burning sensation up and down the thoracic segment of my spine, radiating small spasms coming at close intervals on both sides of my upper back, mild numbness in both hands plus my tongue and cheeks, and a slight tremor in both hands resulting in very poor dexterity and fine motor skills.

So I called, and went back in today.

While there, I learned that results of the last two tests were in and I do not have neuromyelitis optica, when the myelitis is present on the optic nerve. This is VERY good news. My neurologist says the vision issues as well as the tremors and hand numbness/dexterity issues are almost certainly related to the high dose of prednisone I am on and should resolve as that amount is able to come down over time. She wants to get me down to 40mg as soon as possible, as long as the inflammation in my spine can afford lowering the dose. We'll start on that again soon.

She also prescribed me more sleep, and I am required--if I am to get well--to say no to some of the household and personal responsibilities I am trying to always accomplish. I must get more sleep, as well as 30 minutes horizontal with eyes closed at the end of every work day for a bit.

Now, the cause:
We learned that I have active antibodies operating right now in my body, looking for a coxsackie virus to attack. These antibodies have been known to attack the brain and spinal cord in the past, causing types of meningitis and myelitis. The neurologist is quite confident that it was exposure to the coxsackie virus, followed by an immune response that turned autoimmune, that caused my transverse myelitis.

I had coxsackie--commonly known as the generally mild and reserved-for-childhood disease hand, foot, and mouth--when my oldest daughter was about 18-20 months old. I thought I was immune to it, but apparently there are two strains (A and B) and numerous varieties under each of those strains. We do know that my two younger daughers had the disease this past late fall/early winter. It was almost epidemic in both their schools. So it was also in my house. It is likely this exposure that my body responded to. I did not have sympoms of the illness, but it must have been in there somehow. Perhaps my earlier exposure had something to do with how it failed to present this time.

So, there are some answers. The good news about the coxsackie response is that, while it does do serious damage, it has never been documented to be multi-phasice. That means I do not have to worry about a recurrence of lesions. Unlike multiple sclerosis, which can produce new lesions over time for a person's entire life, this should be a one-time thing.

The other really good news is that myelitis from coxsackie is more likely to affect people much younger than I am, and I nearly was brought to my knees thinking of how close it might have been to harming my young and active girls, with all their years of life ahead of them. I am thanking God that it came to me instead of to them.

I do not know if the scene in Job, in which our enemy comes to the Father asking for permission to afflict others, still occurs. But it occurred in my imagination today. I could see him coming and asking to give this disease to my track-running and hurdling Miriam, or to my always tumbling or unicycle-riding Jill, and seeing my Father flare up in absolute resistance, responding, "By no means may you touch one of those children," but then, perhaps, knowing how much I would prefer it, and knowing how I have asked him before to let me know what it is to carry a cross, and how I have gone to the mat with him in the past and asked for him to transfer Jane's illnesses to me, that he might have answered, knowing he was going to give me more of himself, "But have you considered my servant, Rebecca?"

If a parent can carry an affliction for her child, she will. Every single time. Like I said, I do not know if such a conversation happened, but if it did, so be it. I say it again: SO BE IT. Let it be me and not one of them. I will stand or sit or crawl in that gap.

As to healing: The prognosis is still the same at this early point. Roughly 33% of people's bodies can heal from demyelinization. Roughly 33% will attain partial healing. Roughly 33% will not heal. Only time will tell. The doctor today said again, at least two more months before we should even try looking with a new MRI. At least a year and possibly two before full healing will occur.

So, rest, eat well, adjust medicines, exercise and stretch as much as possible to keep muscles healthy, pray, rest some more, and keep putting one clumsy foot in front of the other.

Right now, I'm encouraged, and thankful, and I can do what's next.

Love you all. Thank you for reading.

Past posts:

1. The Surprise Diagnosis: Transverse Myelitis
2. High Hopes and High Places
3. What's on Your Nerves? An Update
4. Meal Train for Our Family--service opportunity we won't turn away yet
5. More Changes--in the Wrong Direction

More Changes... in the Wrong Direction

Today has not been a good day, illness-wise.

Yesterday, I began experiencing some spasm-like sensations in the thoracic area of my back. They radiated out around my ribs in both directions. I had trouble sleeping due to the spasms.

Today the spasms are gone but the intensity of tingling in my left foot is steadily increasing again. Additionally, I am experiencing some numbness in new areas: both hands and my face, particularly my mouth, tongue, cheeks, and jaws.

I have a call in to the neurologist about the changes. They might be related to changes in the prescriptions that I am on. The NP reduced my dosage of prednisone from 60mg daily to 50mg daily, beginning yesterday, and increased the gabapentin from 500mg daily to 700mg daily at the same time. I am not sure what effects those changes could be having.

I'm a little scared, to be honest. I wrote out a notecard today and found handwriting to be very difficult. I learned to letter in college and have had good handwriting that pleases me to look at. Today, my handwriting resembles that of my grandmother's when she reached her 80s. Dexterity for fine motor is just not there.

Does this mean new lesions are forming in the myelin somewhere? Or is the a side effect of the medication? I have left a detailed message with the NP and am waiting for her response. In the meantime, perhaps providentially, the imaging center called to set up my next MRI. Upon talking to the scheduler, she chose to secure the next available spot for me, which is less than two weeks away, rather than wait for a May/June option that was in the original instructions. She told me I could change it to a later date after talking with someone in neurology today, given my current situation. I can see that only as an act of providence--God's provision for me in advance, before I even asked him--and take encouragement from it. He sees. He knows.

Please pray for improvement and no new attack. Please pray for prompt care. Please pray for my eyes to be set on things above, because I admit it: I'm scared. I want to get better and worse was not on my agenda for today, or any day. Please pray for peace.

What's on Your Nerves? An Update

Thanks to my friend Renee for this meme and the chuckle that came with it. We have to keep a sense of humor, no matter how hard it gets or how long we're asked to wait. Wait on responses. Wait on answers--even those that might not ever come. Wait for healing.

And that's basically what yesterday's one-month post-hospital followup with the Outpatient Neurology office was. An appointment to help me know how to wait some more.

I promised an update, so here it is:

It's been two months since the mysterious bite or wound that may or may not have started this strange process rolling, and 49 days since I woke up with a tingling, painful, numb left foot. It has never "woken up."

My appointment didn't go exactly as I expected. I had been told in the hospital upon release that I would get another MRI yesterday to see if the spinal cord lesions were settling down (less inflamed), disappearing, or (hopefully NOT) multiplying. But upon meeting with the NP there, and reviewing my situation, she decided an MRI would not provide any valuable information.

That's because my symptoms aren't showing up in new places--except very possibly in my vision. It does seem softer in focus than it was before all this started. The NP decided we should check for neuromyelitis optica just in case. But the numbness and tingling and pain are all still in the same area: primarily left foot and leg; secondarily right foot and lower calf. Though the presentation varies--some days there's overall numbness; some days localized bands of tightness with weakness; some days intense tingling; some days a buzzing sensation that comes and goes intermittently, as if my cell phone is set on vibrate and stored under my skin. But though the sensations vary, they present in the same areas, and that, she says, means there are no new lesions at this point.

So yesterday, I had my reflexes checked again and reflexes are still working. This is still good news. She checked muscle strength and that is decreasing. I can tell and was confident she would discover that. My legs do feel weaker. I stood a longer than normal time at church on Sunday because I had opportunity to teach, and by the time I got to the main worship service, I really could not stand comfortably through all the worship songs. I could feel a little shakiness that suggested I should sit down before doing so became embarrassingly automatic and unavoidable. Physical therapy was discussed briefly. No appointments were set up for that yet, but that will be in my future and probably soon.

My medications  have been adjusted some more and this is good. I am down now to 50mg of prednisone daily (from 100mg intravenously in the hospital, to 80mg and then 60mg orally at home) and that will continue to taper down over the next month or two. But she took me up on the gabapentin for nerve pain, in hopes that some more of this tingly and tight-bandedness that I feel all the time might decrease. It will take several days to ramp that dosage up gradually but I might find some relief from it by the end of the weekend.

I'm to continue with the nutritional cautions of before to provide the nutrients needed to restore myelin and to avoid the foods that would affect blood sugar levels negatively--a side effect that prednisone can cause and really exacerbate. So I'm low, low carb, no sugar, high on proteins and good fats, omega-3s, with some vitamin and other supplements. I am trying the Lion's Mane mycelium along with the purified fish oil, B12, D3, collagen, folate, etc. that I have been using for the last month. I've added beta carotene now that eyesight seems to be doing something weird.

I gave another hearty donation of my blood for testing yesterday. There are a few different things the NP wanted to look at that would show up in blood. One is the presence of ANA antibodies--the markers for autoimmune issues. I had elevated ANA levels a month ago, suggesting strongly that the demyelination was the result of an autoimmune attack. Usually, that's a one-time thing and if so, ANA should be going down. If it is not decreasing or if it is even increasing, then there could be concern for a future attack and different therapies--such as a blood plasma replacement--would be considered. The second test has to do with my eyesight. Apparently it is possible for something like this to hit the optic nerve, and some marker for it would show up in a blood test, so she wanted to check for that. I do not know at this time what kind of treatment would follow if my eyes are being affected by this whole thing, but would ask for prayer now for not just legs but eyes too. As an editor, my vision is critical to my job, and my job is critical to my (and my children's) survival. (And that's not to mention that at this point, my job is also my ministry, and I would hate to consider that I might not be able to do it well enough to continue on in it.)

In all of this, the NP kept reminding me that we are talking about months and maybe even years--and not days and weeks--in managing and watching and tracking and treating this. I need to be realistic about that. This is reality. This won't be over by summer time, most likely. I need to set appropriate goals and expectations and not get discouraged when it does take the actual time it's going to take.

In the meantime, I am truly thankful for the love, support, prayers, encouragement, and practical help that so many have literally lavished on me and the girls. Meals! And a new sidewalk that isn't treacherous to walk on with numb and uncertain feet! I am truly thankful that my condition isn't worse. I have heard from others who were attacked just as shockingly by transverse myelitis and Guillain-Barre syndrome and similar spinal cord diseases who lost much more mobility and experienced much more pain for a longer time than I have. I recognize the mercies I have received and do not take them for granted. And whatever this turns out to be, it is, eternally speaking, temporary. I know that. I'm still asking for healing here and soon, but I know this isn't all there is.

His grace is sufficient. What does that exactly mean when you're suffering and wondering about the now and the next and the effect it will have on the life you are trying to live? I'm asking him to make that clear to me. What does it mean that his grace is sufficient when my body is not doing everything it used to do well? Right now, I would say that it means that my focus on the "necessary tasks" of my life might not be as eternally significant as I think they are. If I can't do what I thought I would do with these legs and these eyes, my place in his eternal fellowship is still secure, because I don't earn it, and my purpose isn't lessened. I'm still his. I'll still be in the throngs, with a role. I've lost nothing, really, in that big picture. So here and now, I'll love him still.

Strengthen the weak hands,
    and make firm the feeble knees.

Say to those who have an anxious heart,
    “Be strong; fear not!
Behold, your God
    will come with vengeance,
with the recompense of God.
    He will come and save you.”

Then the eyes of the blind shall be opened,
    and the ears of the deaf unstopped;

then shall the lame man leap like a deer,
    and the tongue of the mute sing for joy.

                                 --Isaiah 35:3-6


The Surprise Diagnosis: Transverse Myelitis

Meal Train for the Cochrane Women

What Is Transverse Myelitis? (Mayo Clinic)