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)