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
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
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