This is going to be an informational blog post, just to help get an update out there in one attempt, rather than rehashing the story over and over.
This won't be much of a reflective post. I'm not far enough along in this journey yet to even begin to process what it might mean, how it might work for good. This is a "just the facts" post for those of you who have been so kind and thoughtful to ask into my life over the incidents of the last few weeks. (Update: I've begun a bit of that reflection plus seeking and accepting inspiration to focus on healing since writing this. You can find that post here. )
So here goes. PLEASE NOTE: I am going to talk specifically about physical symptoms. Some of those reach into the pelvic area. If these kinds of details make you uncomfortable, you might want to skim lightly and/or skip bits of this post. But I am not going to edit out important details because others suffering similar rare conditions might need to know everything that is going on, to compare for their own health.
Absolutely out of nowhere, in January, I went from being active and healthy to exhibiting a series of strange and disruptive health symptoms. I am going to start at what seems to me to be the beginning, though I am also compelled to remember that "correlation does not equal causation." What I note as the starting point may simply be coincidence, and we may never actually know with certainty what caused my condition.
I have been diagnosed with transverse myelitis, a rare and incurable (but highly variable) condition that attacks the nerve cell covering called myelin in the spinal cord. There are other forms of myelitis or demylineating diseases, some with known causes. Polio, for instance, is a type of myelitis. I do not have polio. Multiple sclerosis is a type of myelitis. Due to the acute nature of the onset of my lesions, my condition is not thought to be multiple sclerosis at this time, but it is not 100% ruled out. Only the passing of much time will be able to unequivocably rule out MS, but it looks unlikely.
The first health condition of note occurred on Sunday, January 13, 2019. It gets noted in this story because it was an unusual event and the doctors I have seen at the hospital (both neurologists and infectious disease doctors) took careful note of this event, documented it, but could not say that it was the initial cause.
On that cold evening, I had just assembled a decorative firewood rack for my mud room. I was filling it with firewood from outside, planning to have wood dry and available inside for numerous cozy fires over the next few winter days. I failed to put on gloves, which, in hindsight, was quite foolish and careless of me. I would do that differently if it was possible to turn back the clock. But here we are now...
After a few armloads, I remember reaching down for a log with my right hand. My hand went under the log and I did not see what it came in contact with, but I felt a single brief, sharp sting on the first joint of my middle finger--the spot where your pencil rests when you're handwriting something. It wasn't even severe enough to make me put down the log right away. I brought it inside, set it in the rack, and then examined my finger. The pain had already stopped. I thought I had gotten a splinter, but nothing was visible except a single, tiny, barely pink dot. It didn't hurt immediately, and I thought no more about it that night.
But the next morning, Monday, January 14, upon waking, the spot had turned into a prominent, raised, thick-skinned, hard blister. It was about 2 mm in diameter. The top of the blister was white but it wasn't filled with pus. The white was simply the thick, raised skin with clear fluid under it. It was quite sore at this point. The white blister had a small dark red ring around it. The ring was at most about 2mm additional encircling the blister. It was not yet raised or puffy. Over the course of the day, that ring spread wider and began to swell and thicken, like a raised pad of flesh surrounding the blister. It turned darker red--not quite purple but burgundy. The radius of the swollen pad reached about 5mm in any direction around the blister and a thickness of about 3mm elevation above typical skin level. The blister opened. Clear fluid, like water, drained immediately. It did not continue to ooze. There was no pus. The skin seemed to close back up and stayed white for a time. The interior of the blister was quite sore--too sore to touch. Pressure of any kind drew an immediate reaction to make it stop.
On Tuesday at work, I found I was very uncomfortable. My chair was uncomfortable. My back was uncomfortable. I was fidgety. My neck gradually grew slightly stiff. I began to get chills. I recognized this as a fever coming on, causing chills, body aches, general malaise and discomfort. I took my temperature after work and it was close to 100 degrees. It continued to rise gradually, reaching 103 by Wednesday, January 16. I made an appointment to see my general practitioner, suspecting influenza, even though I did have a flu shot last fall. But I also wondered if the sting/bite/splinter could be related. I showed a picture to my boyfriend, who suggested it could be some type of spider bite and perhaps it was causing the reaction. I am mildly allergic to wasp stings, but I've been stung only once in my life. The reaction was extensive skin-surface level swelling that created a raised pad of flesh almost 7 inches long and 4 inches wide around my upper arm and to the elbow that lasted six weeks. I had no nerve issues or breathing issues from that wasp sting then, but was told it was possible that reactions could get worse or change with repeated exposure to insect toxins.
The doctor looked at both the wound on my finger and my other symptoms. He felt they were unrelated. He suspected I had pricked my finger on the wood and introduced some earthborn infection that was limited to a skin infection, but wanted to treat it with an antibiotic. He did an influenza test for the fever and body aches, which now had added headache to the list of symptoms. The flu test came back negative. He still presumed that I had some type of virus that was flu-like and that I would develop a respiratory illness over the next day or two. He prescribed rest and fluids and over the counter medication for that illness when it did show up. But it didn't.
I started the antibiotic (a sulfameth something or other) on the evening of January 16. By the end of the day on January 17, I began to detect the symptoms women often get when on a strong antibiotic, suggesting that a candida yeast imbalance was beginning. I ate whole yogurt and took a probiotic supplement but by Friday the 18th, I was in true pain that felt like a yeast infection. I emailed my doctor again, and he wired in a prescription for two doses (a week apart) of fluconazole antifungal. I took the first dose that day.
On Friday evening, another new symptom emerged: urinary retention. Late in the evening, I had the strong urge to urinate but was unable to get the urine to let down for almost 20 minutes of frustrated trying. I thought it was probably just a condition of swelling and irritation from the fungal infection, and was relieved when it finally did happen. But that wasn't the end of it. Even as the pain and irritation from the yeast subsided, urine release continued to be difficult for the next several days. Sometimes it would take minutes--5 to 7 minutes was normal--to concentrate, relax, run water, breathe deeply, and eventually be able to go. But on Monday morning, it got worse. It took a full 30 minutes and involved getting into the shower to let hot water provide a muscle-relaxing massage before I could go. I was getting scared now.
Additionally, over the weekend, I developed another short-term symptom. My wrists, palms, fingers, ankles, arches, and toes all suddenly took on elements of what I think arthritis must be like. I've never had arthritis, so I am speculating, but hands and feet both became stiff, tight, sore, and painful. It was difficult to stretch or bend digits. I wanted to rub and rub and rub my hands and feet to try to relieve the discomfort. It lasted 36 hours and then disappeared as suddenly as it had come on. All day Saturday the 19th and half of Sunday the 20th, and then I was back to normal in that regard.
Still, no respiratory illness had shown up from the suspected virus of the days before.
The wound on my finger began to show minimal signs of tissue necrosis, but no more than one gets from a normal blister achieved from hard work. The top layer of white skin simply died and peeled off, leaving a small crater in the still-raised fleshy pad. It was too sore to touch, like raw new skin. The peeled spot was about 5mm in diameter and its center had a dark red spot about 2mm in diameter, darker than the surrounding swelling. It remained open for more than a week and then gradually began to scab over. Today, February 18, there is still a red tone to the skin there but there is no raised matter. The scab had dried and come off and the skin is healed. Pressure on the spot does give a slight sensation of a pain center still but it is not disruptive.
I continued to monitor (and worry a bit) the urinary retention issue from Monday to Wednesday but it did get gradually better. Urination still took effort and concentration but I was able to go and didn't need to catheterize, so I didn't seek any medical help at that time. But on Wednesday, January 23, another new symptom arose. When I woke that morning, the first three toes and the ball of my left foot were asleep--in pins and needles. Very obvious, pronounced, prickly pins and needles.
I got out of bed and tried putting pressure on the foot. That segment shot pain through it. I waited for it to wake up, expecting circulation to flow with gravity and pressure and for it to right itself, but it never did. To this day, that foot has not yet "woken up." Over the course of the day, the prickles spread to all my toes and the full underside of my foot including arch and heel. The prickles spread to the top of the foot that evening. On Thursday, a general numbness began creeping up my left leg. By Friday, it had reached my pelvic area, left side.
Friday was the wedding of a couple of dear friends. I was determined to dance at their wedding and did so. I'm proud to say I did not fall down, and there was really no shame at my clunky dancing either because I never made any suggestions to be good at dancing--just that I would do it. But I was aware the entire time that only one foot/leg was in that game. I had no idea why I was experiencing this, but my left leg simply felt numb and dead. I could move it. I could put pressure on it. It would stay in place and hold me up. But the bottom of my foot was in intense pins and needles pain and the rest of the leg felt heavy and numb to the touch--as if I'd had a too-strong epidural that took on only one side of my body. I faked my way through the evening and had a great time, but I was worried.
I told my boyfriend about the growing numbness and we speculated that I had pinched a nerve. Maybe it was sciatica. I didn't have back pain though, so it wasn't a spot-on fit. But I made an appointment with my chiropractor for Monday, January 28. My chiropractor is very practical about joint adjustments. For the last 18 years, I have been to see him a few times a year just to keep my spine in good alignment. If something is pinching a nerve, he can almost always relieve that in one session and send me on my way.
The chiropractor found a slight misalignment in my pelvis (just a slight rotation; it's common in active women) and made an adjustment to that. We both hoped that would solve the problem, and that evening, I did think that I could feel more sensation in my upper thigh and one segment of my foot. It didn't last, though, and now I am not sure if that was just a fluctuation in symptoms or a "wishful thinking response."
I emailed my doctor on Tuesday to tell him about the growing numbness. He suggested I give it a day or two and come in if it didn't resolve. It didn't. I made a second appointment with the chiropractor for Wednesday, January 30. He did not find misalignments and was puzzled by the symptoms. The lack of back pain suggested to him that my situation was not likely to be a pinched nerve or herniated disc. He saw no signs of sciatica. He said he believed my condition was something medical beyond frame alignment and that I should return to my doctor for more advice.
I made an appointment with my doctor for Friday, February 1.
After recounting all the details about urine retention and the extent of the pain from the jangling nerves (which by this time had moved far beyond discomfort and into real disruptive pain, alternating between sharp stabbing pins and a sensation of debilitating frostbite in my foot), my doctor truly paid attention. He told me me feared a herniated disc and wanted me to go immediately, nonstop, to the Emergency Department at the hospital. He said he would call ahead to tell them I was coming and he wanted me to get an MRI on my spine right away. He told me to expect to be admitted and to keep all options open. Surgery might not be out of the question.
I reported to the ER at about 11:15am on Friday, February 1st and spent the entire day there. It took hours to get in for the MRI, and the initial MRI that was ordered was not actually for the needed area. The ER doctor orderd a lumbar spine MRI, basic, without contrast dye. It came back clear--and there was some good news in that if even not a solution. I had no herniated disc, no spinal stenosis, no misalignment, no tumor.
The ER doctors changed shifts. A new one had me retell the entire history. He repeated the reflexes tests on my legs and feet (tickles, taps, muscle resistance, pricks) that were done earlier. Everything was responding even though it felt painful and weird. I told him on Friday evening that I thought I might be feeling some prickling in the toes of my right foot now but I was unsure. It wasn't obvious, and it could have just been my head playing tricks on me out of fear. He listened and agreed that I was probably imagining it, but he wasn't condescending either. He was thankful to have the information, even if it wasn't scientific yet. But it would become that way very soon. The new doctor said he wanted to confer with the on-call neurologist to ask about a lumbar puncture to test spinal fluid. He was considering multiple sclerosis and Guillain-Barre syndrome--though he felt my reflexes were too good to be Guillian-Barre. He talked to the neurologist who did not want to do the spinal tap yet, however.
The next step, then, was to order a CT of my brain. There was suspicion that perhaps I had had a minor stroke, causing some level of neurological damage to my left side--or perhaps that there might be a brain tumor affecting the nerves on that side.
The CT likewise came back clear. No evidence of stroke, brain tumor, or tangled blood vessels. Blood tests were next. Basic tests showed no sign of heart attack or any obvious active infection. The ER doctor and neurologist (whom I did not meet but got reports from through the ER doctor) said infectious disease was also being looped in. More indepth blood tests were ordered. Results would take hours to weeks to compile, I was told. No lumbar puncture was ordered.
I was released from the ER around 9:30 or 10 that night without a diagnosis. I was told that the outpatient neurology would set up an appointment with me on Monday morning for more study, and that if I had not heard from them by 10:00am, I was to call to set the appointment myself.
On Saturday, the prickles began in my right foot in earnest. By Sunday, the right foot was tingly with pain almost as severely as the left foot, but the numbness did not progress up my right leg. It remained in the sole and toes of the foot, with the sharp sensation and not the dull, numbness.
I contacted my doctor again on Monday and told him it was still progressing. I made another appointment to go in to see him on Tuesday, February 5. I did not hear from outpatient neurology, and so I called them to get my next appointment. The scheduler was coarse and difficult. He told me I needed a referral to get in with the practice. I told him I thought that was what their neurologist and the ER doctors were talking about on Friday. I told him I had paperwork they had printed for me with instructions, that phone number, a plan. He seemed exceedingly annoyed and put me on hold while he "went to try to figure this out." When he returned, he told me they had a very busy practice and could not just take on new patients with a phone call, but that he could find one neurologist that he could work me in with in late April. I took the appointment with great discouragement.
At my doctor's appointment on Tuesday, my general practitioner said he was not happy with the April delay. He called the neurology office and left a message. He asked me to wait in the office there for a response because he thought my situation required some urgency. It took about an hour for a doctor from the neurology practice to call back, but she suggested that he set up a direct admission to the hospital for me for that same day, so that I could get back in for full analysis there without having to come to the practice. So I went home, got my kids home from school and fed, packed a bag for two nights in the hospital (I was thinking optimistically) and went to check myself in.
I was told to expect another MRI of a different section of my spine and a lumbar puncture over the next 18 hours, and I received both, plus an additional MRI of my brain. Both MRIs were done using contrast dye to "light up" any areas of lesions or inflammation. The MRIs were easy. The lumbar puncture was hard. Every single staff member at the hospital, from nurses to aids to transport staff to lab techs to whomever it was that put that spike in my spine were wonderful: communicative, compassionate, concerned. I cannot complain about the care I received while going through this. But answers are still hard to come by.
The thoracic MRI with contrast dye showed the problem. 5-6 new lesions, all about equally inflamed, suggesting they are the same age, on a section of my spinal cord. The lesions reveal that something has caused the fatty, protective myelin sheath on the nerves to deteriorate. An uncovered nerve goes haywire, sending false signals of discomfort, pain, sensation. The lesions on my spinal cord occur on both sides--the transmitting and the receiving side of the nerve fibers. Hence the name "transverse" myelitis. (Mayo Clinic: Transverse Myelitis) The brain MRI was presumed to be clear, however the neurologist reporting back to me said there was one tiny spot on it that could be a lesion or "could be a bit of fluff on the image," she said. It was too small to be taken seriously enough to re-run the MRI but will be checked in the next followup MRI in March.
Both the neurologist and the infectious disease doctors said they would keep looking for an actual cause of the lesions, but both agreed that such a cause may never be found. In many cases, transverse myelitis is an autoimmune response that hangs on and attacks the body AFTER the body has fought off some real threat. It seems to happen randomly.
I was put on intravenous steroids daily while in the hospital to try to reduce the inflammation and calm the activity around the lesions so that hopefully they will begin to heal on their own. While there is no cure for myelitis like this, about 1/3 of patients with it will see healing and restoration of the myelin covering of their nerve cells. Another third will receive partial healing but may be left with some odd pains or sensations or limitation in function. Yet another third see no improvement at all. I am told that improvement usually takes place between 2 and 12 weeks of onset of symtoms. I am on day 26 right now since the first sign of pins and needles. I do not yet have improvement that I can point to as progressive or obvious. Pain comes and goes but is present every day. It is worse in the afternoon and evening.
I stayed in the hospital for a week and was released to home on Monday, February 11 with prescriptions to continue the high-dose steroid orally, and some other medications for nerve control and pain management. Out of fear of becoming dependent, I don't think I have been taking enough of the pain management medication. Last night, I hit a real low with intense pain and a sense of emotional fatigue that I may not be able to endure under it. I took more medication and got some rest. Today, I think I can make it through today.
I've been advised to follow a nutrient dense diet to give my body what it needs to rebuild the myelin if it becomes ready to do so. I've been advised to keep my diet very low carb too because the high dose prednisone can prevent the body from processing blood sugar correctly, and a carb-centric diet while on the steroid can mimic diabetes. We definitely don't want that. I was told to supplement my diet with high quality Omega 3 fish oil, vitamin D3, vitamin B12, good quality collagen, green tea, turmeric, folate, avocado, spinach, kale, olives, blueberries (low on the glycemic chart but loaded with antioxidants), salmon, tuna, whole eggs, nuts. I am following all the instructions. I want to get well.
Today I have a slight burning sensation in my spine in the thoracic region. I do not know what this means. It could be simply muscle fatigue from compensating differently for a "dead" leg and foot. The body will adjust to still do what it needs to do, even if that means moving in new ways that aren't exactly natural or ideal.
There's a whole lot of "hurry up and wait" in this scenario. Wait for the steroids to help the inflammation. Wait for the next MRI (which will be on March 11) to see if inflammation is down and hopefully--NO NEW LESIONS ARE FORMING.
If the steroid therapy does not help--or doesn't help enough--there is a possibility of doing a blood plasma replacement. In this case, my blood plasma would be removed and replaced with much donor plasma. The idea behind this is to remove the aggressive autoimmune antibodies my body made--and which might still be attacking me--with antibody-free plasma, and hope for a reset. I am open to that therapy and will welcome it if that is what needs to be done.
I have beautiful friends in the Body of Christ who are taking care of me. Meals are coming about every 3 days--generous meals--and this helps so much as being on my feet to cook in the evening is the most painful time of day. Prayers are being poured out. Offers to help with groceries and visits and anything needed are constantly on the table. I am thankful. I need my Tribe.
I don't yet know how I actually FEEL about all of this. I'm not asking "Why?" right now. I'm just seeing this truth: "This happened." I want very much to get well and not hurt like this. I want to return to service and I want to enjoy my life, of course, but I can't do much in the way of processing until some more information comes in. So I desire your prayers over me as much as you are willing to give them, and I will update on this blog to reach as many people as possible whenever I have anything relevant to share.
Thank you to all who took the time to read this.
--Rebecca
This won't be much of a reflective post. I'm not far enough along in this journey yet to even begin to process what it might mean, how it might work for good. This is a "just the facts" post for those of you who have been so kind and thoughtful to ask into my life over the incidents of the last few weeks. (Update: I've begun a bit of that reflection plus seeking and accepting inspiration to focus on healing since writing this. You can find that post here. )
So here goes. PLEASE NOTE: I am going to talk specifically about physical symptoms. Some of those reach into the pelvic area. If these kinds of details make you uncomfortable, you might want to skim lightly and/or skip bits of this post. But I am not going to edit out important details because others suffering similar rare conditions might need to know everything that is going on, to compare for their own health.
Absolutely out of nowhere, in January, I went from being active and healthy to exhibiting a series of strange and disruptive health symptoms. I am going to start at what seems to me to be the beginning, though I am also compelled to remember that "correlation does not equal causation." What I note as the starting point may simply be coincidence, and we may never actually know with certainty what caused my condition.
I have been diagnosed with transverse myelitis, a rare and incurable (but highly variable) condition that attacks the nerve cell covering called myelin in the spinal cord. There are other forms of myelitis or demylineating diseases, some with known causes. Polio, for instance, is a type of myelitis. I do not have polio. Multiple sclerosis is a type of myelitis. Due to the acute nature of the onset of my lesions, my condition is not thought to be multiple sclerosis at this time, but it is not 100% ruled out. Only the passing of much time will be able to unequivocably rule out MS, but it looks unlikely.
The first health condition of note occurred on Sunday, January 13, 2019. It gets noted in this story because it was an unusual event and the doctors I have seen at the hospital (both neurologists and infectious disease doctors) took careful note of this event, documented it, but could not say that it was the initial cause.
On that cold evening, I had just assembled a decorative firewood rack for my mud room. I was filling it with firewood from outside, planning to have wood dry and available inside for numerous cozy fires over the next few winter days. I failed to put on gloves, which, in hindsight, was quite foolish and careless of me. I would do that differently if it was possible to turn back the clock. But here we are now...
After a few armloads, I remember reaching down for a log with my right hand. My hand went under the log and I did not see what it came in contact with, but I felt a single brief, sharp sting on the first joint of my middle finger--the spot where your pencil rests when you're handwriting something. It wasn't even severe enough to make me put down the log right away. I brought it inside, set it in the rack, and then examined my finger. The pain had already stopped. I thought I had gotten a splinter, but nothing was visible except a single, tiny, barely pink dot. It didn't hurt immediately, and I thought no more about it that night.
But the next morning, Monday, January 14, upon waking, the spot had turned into a prominent, raised, thick-skinned, hard blister. It was about 2 mm in diameter. The top of the blister was white but it wasn't filled with pus. The white was simply the thick, raised skin with clear fluid under it. It was quite sore at this point. The white blister had a small dark red ring around it. The ring was at most about 2mm additional encircling the blister. It was not yet raised or puffy. Over the course of the day, that ring spread wider and began to swell and thicken, like a raised pad of flesh surrounding the blister. It turned darker red--not quite purple but burgundy. The radius of the swollen pad reached about 5mm in any direction around the blister and a thickness of about 3mm elevation above typical skin level. The blister opened. Clear fluid, like water, drained immediately. It did not continue to ooze. There was no pus. The skin seemed to close back up and stayed white for a time. The interior of the blister was quite sore--too sore to touch. Pressure of any kind drew an immediate reaction to make it stop.
On Tuesday at work, I found I was very uncomfortable. My chair was uncomfortable. My back was uncomfortable. I was fidgety. My neck gradually grew slightly stiff. I began to get chills. I recognized this as a fever coming on, causing chills, body aches, general malaise and discomfort. I took my temperature after work and it was close to 100 degrees. It continued to rise gradually, reaching 103 by Wednesday, January 16. I made an appointment to see my general practitioner, suspecting influenza, even though I did have a flu shot last fall. But I also wondered if the sting/bite/splinter could be related. I showed a picture to my boyfriend, who suggested it could be some type of spider bite and perhaps it was causing the reaction. I am mildly allergic to wasp stings, but I've been stung only once in my life. The reaction was extensive skin-surface level swelling that created a raised pad of flesh almost 7 inches long and 4 inches wide around my upper arm and to the elbow that lasted six weeks. I had no nerve issues or breathing issues from that wasp sting then, but was told it was possible that reactions could get worse or change with repeated exposure to insect toxins.
The doctor looked at both the wound on my finger and my other symptoms. He felt they were unrelated. He suspected I had pricked my finger on the wood and introduced some earthborn infection that was limited to a skin infection, but wanted to treat it with an antibiotic. He did an influenza test for the fever and body aches, which now had added headache to the list of symptoms. The flu test came back negative. He still presumed that I had some type of virus that was flu-like and that I would develop a respiratory illness over the next day or two. He prescribed rest and fluids and over the counter medication for that illness when it did show up. But it didn't.
I started the antibiotic (a sulfameth something or other) on the evening of January 16. By the end of the day on January 17, I began to detect the symptoms women often get when on a strong antibiotic, suggesting that a candida yeast imbalance was beginning. I ate whole yogurt and took a probiotic supplement but by Friday the 18th, I was in true pain that felt like a yeast infection. I emailed my doctor again, and he wired in a prescription for two doses (a week apart) of fluconazole antifungal. I took the first dose that day.
On Friday evening, another new symptom emerged: urinary retention. Late in the evening, I had the strong urge to urinate but was unable to get the urine to let down for almost 20 minutes of frustrated trying. I thought it was probably just a condition of swelling and irritation from the fungal infection, and was relieved when it finally did happen. But that wasn't the end of it. Even as the pain and irritation from the yeast subsided, urine release continued to be difficult for the next several days. Sometimes it would take minutes--5 to 7 minutes was normal--to concentrate, relax, run water, breathe deeply, and eventually be able to go. But on Monday morning, it got worse. It took a full 30 minutes and involved getting into the shower to let hot water provide a muscle-relaxing massage before I could go. I was getting scared now.
Additionally, over the weekend, I developed another short-term symptom. My wrists, palms, fingers, ankles, arches, and toes all suddenly took on elements of what I think arthritis must be like. I've never had arthritis, so I am speculating, but hands and feet both became stiff, tight, sore, and painful. It was difficult to stretch or bend digits. I wanted to rub and rub and rub my hands and feet to try to relieve the discomfort. It lasted 36 hours and then disappeared as suddenly as it had come on. All day Saturday the 19th and half of Sunday the 20th, and then I was back to normal in that regard.
Still, no respiratory illness had shown up from the suspected virus of the days before.
The wound on my finger began to show minimal signs of tissue necrosis, but no more than one gets from a normal blister achieved from hard work. The top layer of white skin simply died and peeled off, leaving a small crater in the still-raised fleshy pad. It was too sore to touch, like raw new skin. The peeled spot was about 5mm in diameter and its center had a dark red spot about 2mm in diameter, darker than the surrounding swelling. It remained open for more than a week and then gradually began to scab over. Today, February 18, there is still a red tone to the skin there but there is no raised matter. The scab had dried and come off and the skin is healed. Pressure on the spot does give a slight sensation of a pain center still but it is not disruptive.
I continued to monitor (and worry a bit) the urinary retention issue from Monday to Wednesday but it did get gradually better. Urination still took effort and concentration but I was able to go and didn't need to catheterize, so I didn't seek any medical help at that time. But on Wednesday, January 23, another new symptom arose. When I woke that morning, the first three toes and the ball of my left foot were asleep--in pins and needles. Very obvious, pronounced, prickly pins and needles.
I got out of bed and tried putting pressure on the foot. That segment shot pain through it. I waited for it to wake up, expecting circulation to flow with gravity and pressure and for it to right itself, but it never did. To this day, that foot has not yet "woken up." Over the course of the day, the prickles spread to all my toes and the full underside of my foot including arch and heel. The prickles spread to the top of the foot that evening. On Thursday, a general numbness began creeping up my left leg. By Friday, it had reached my pelvic area, left side.
Friday was the wedding of a couple of dear friends. I was determined to dance at their wedding and did so. I'm proud to say I did not fall down, and there was really no shame at my clunky dancing either because I never made any suggestions to be good at dancing--just that I would do it. But I was aware the entire time that only one foot/leg was in that game. I had no idea why I was experiencing this, but my left leg simply felt numb and dead. I could move it. I could put pressure on it. It would stay in place and hold me up. But the bottom of my foot was in intense pins and needles pain and the rest of the leg felt heavy and numb to the touch--as if I'd had a too-strong epidural that took on only one side of my body. I faked my way through the evening and had a great time, but I was worried.
I told my boyfriend about the growing numbness and we speculated that I had pinched a nerve. Maybe it was sciatica. I didn't have back pain though, so it wasn't a spot-on fit. But I made an appointment with my chiropractor for Monday, January 28. My chiropractor is very practical about joint adjustments. For the last 18 years, I have been to see him a few times a year just to keep my spine in good alignment. If something is pinching a nerve, he can almost always relieve that in one session and send me on my way.
The chiropractor found a slight misalignment in my pelvis (just a slight rotation; it's common in active women) and made an adjustment to that. We both hoped that would solve the problem, and that evening, I did think that I could feel more sensation in my upper thigh and one segment of my foot. It didn't last, though, and now I am not sure if that was just a fluctuation in symptoms or a "wishful thinking response."
I emailed my doctor on Tuesday to tell him about the growing numbness. He suggested I give it a day or two and come in if it didn't resolve. It didn't. I made a second appointment with the chiropractor for Wednesday, January 30. He did not find misalignments and was puzzled by the symptoms. The lack of back pain suggested to him that my situation was not likely to be a pinched nerve or herniated disc. He saw no signs of sciatica. He said he believed my condition was something medical beyond frame alignment and that I should return to my doctor for more advice.
I made an appointment with my doctor for Friday, February 1.
After recounting all the details about urine retention and the extent of the pain from the jangling nerves (which by this time had moved far beyond discomfort and into real disruptive pain, alternating between sharp stabbing pins and a sensation of debilitating frostbite in my foot), my doctor truly paid attention. He told me me feared a herniated disc and wanted me to go immediately, nonstop, to the Emergency Department at the hospital. He said he would call ahead to tell them I was coming and he wanted me to get an MRI on my spine right away. He told me to expect to be admitted and to keep all options open. Surgery might not be out of the question.
I reported to the ER at about 11:15am on Friday, February 1st and spent the entire day there. It took hours to get in for the MRI, and the initial MRI that was ordered was not actually for the needed area. The ER doctor orderd a lumbar spine MRI, basic, without contrast dye. It came back clear--and there was some good news in that if even not a solution. I had no herniated disc, no spinal stenosis, no misalignment, no tumor.
The ER doctors changed shifts. A new one had me retell the entire history. He repeated the reflexes tests on my legs and feet (tickles, taps, muscle resistance, pricks) that were done earlier. Everything was responding even though it felt painful and weird. I told him on Friday evening that I thought I might be feeling some prickling in the toes of my right foot now but I was unsure. It wasn't obvious, and it could have just been my head playing tricks on me out of fear. He listened and agreed that I was probably imagining it, but he wasn't condescending either. He was thankful to have the information, even if it wasn't scientific yet. But it would become that way very soon. The new doctor said he wanted to confer with the on-call neurologist to ask about a lumbar puncture to test spinal fluid. He was considering multiple sclerosis and Guillain-Barre syndrome--though he felt my reflexes were too good to be Guillian-Barre. He talked to the neurologist who did not want to do the spinal tap yet, however.
The next step, then, was to order a CT of my brain. There was suspicion that perhaps I had had a minor stroke, causing some level of neurological damage to my left side--or perhaps that there might be a brain tumor affecting the nerves on that side.
The CT likewise came back clear. No evidence of stroke, brain tumor, or tangled blood vessels. Blood tests were next. Basic tests showed no sign of heart attack or any obvious active infection. The ER doctor and neurologist (whom I did not meet but got reports from through the ER doctor) said infectious disease was also being looped in. More indepth blood tests were ordered. Results would take hours to weeks to compile, I was told. No lumbar puncture was ordered.
I was released from the ER around 9:30 or 10 that night without a diagnosis. I was told that the outpatient neurology would set up an appointment with me on Monday morning for more study, and that if I had not heard from them by 10:00am, I was to call to set the appointment myself.
On Saturday, the prickles began in my right foot in earnest. By Sunday, the right foot was tingly with pain almost as severely as the left foot, but the numbness did not progress up my right leg. It remained in the sole and toes of the foot, with the sharp sensation and not the dull, numbness.
I contacted my doctor again on Monday and told him it was still progressing. I made another appointment to go in to see him on Tuesday, February 5. I did not hear from outpatient neurology, and so I called them to get my next appointment. The scheduler was coarse and difficult. He told me I needed a referral to get in with the practice. I told him I thought that was what their neurologist and the ER doctors were talking about on Friday. I told him I had paperwork they had printed for me with instructions, that phone number, a plan. He seemed exceedingly annoyed and put me on hold while he "went to try to figure this out." When he returned, he told me they had a very busy practice and could not just take on new patients with a phone call, but that he could find one neurologist that he could work me in with in late April. I took the appointment with great discouragement.
At my doctor's appointment on Tuesday, my general practitioner said he was not happy with the April delay. He called the neurology office and left a message. He asked me to wait in the office there for a response because he thought my situation required some urgency. It took about an hour for a doctor from the neurology practice to call back, but she suggested that he set up a direct admission to the hospital for me for that same day, so that I could get back in for full analysis there without having to come to the practice. So I went home, got my kids home from school and fed, packed a bag for two nights in the hospital (I was thinking optimistically) and went to check myself in.
I was told to expect another MRI of a different section of my spine and a lumbar puncture over the next 18 hours, and I received both, plus an additional MRI of my brain. Both MRIs were done using contrast dye to "light up" any areas of lesions or inflammation. The MRIs were easy. The lumbar puncture was hard. Every single staff member at the hospital, from nurses to aids to transport staff to lab techs to whomever it was that put that spike in my spine were wonderful: communicative, compassionate, concerned. I cannot complain about the care I received while going through this. But answers are still hard to come by.
The thoracic MRI with contrast dye showed the problem. 5-6 new lesions, all about equally inflamed, suggesting they are the same age, on a section of my spinal cord. The lesions reveal that something has caused the fatty, protective myelin sheath on the nerves to deteriorate. An uncovered nerve goes haywire, sending false signals of discomfort, pain, sensation. The lesions on my spinal cord occur on both sides--the transmitting and the receiving side of the nerve fibers. Hence the name "transverse" myelitis. (Mayo Clinic: Transverse Myelitis) The brain MRI was presumed to be clear, however the neurologist reporting back to me said there was one tiny spot on it that could be a lesion or "could be a bit of fluff on the image," she said. It was too small to be taken seriously enough to re-run the MRI but will be checked in the next followup MRI in March.
Both the neurologist and the infectious disease doctors said they would keep looking for an actual cause of the lesions, but both agreed that such a cause may never be found. In many cases, transverse myelitis is an autoimmune response that hangs on and attacks the body AFTER the body has fought off some real threat. It seems to happen randomly.
I was put on intravenous steroids daily while in the hospital to try to reduce the inflammation and calm the activity around the lesions so that hopefully they will begin to heal on their own. While there is no cure for myelitis like this, about 1/3 of patients with it will see healing and restoration of the myelin covering of their nerve cells. Another third will receive partial healing but may be left with some odd pains or sensations or limitation in function. Yet another third see no improvement at all. I am told that improvement usually takes place between 2 and 12 weeks of onset of symtoms. I am on day 26 right now since the first sign of pins and needles. I do not yet have improvement that I can point to as progressive or obvious. Pain comes and goes but is present every day. It is worse in the afternoon and evening.
I stayed in the hospital for a week and was released to home on Monday, February 11 with prescriptions to continue the high-dose steroid orally, and some other medications for nerve control and pain management. Out of fear of becoming dependent, I don't think I have been taking enough of the pain management medication. Last night, I hit a real low with intense pain and a sense of emotional fatigue that I may not be able to endure under it. I took more medication and got some rest. Today, I think I can make it through today.
I've been advised to follow a nutrient dense diet to give my body what it needs to rebuild the myelin if it becomes ready to do so. I've been advised to keep my diet very low carb too because the high dose prednisone can prevent the body from processing blood sugar correctly, and a carb-centric diet while on the steroid can mimic diabetes. We definitely don't want that. I was told to supplement my diet with high quality Omega 3 fish oil, vitamin D3, vitamin B12, good quality collagen, green tea, turmeric, folate, avocado, spinach, kale, olives, blueberries (low on the glycemic chart but loaded with antioxidants), salmon, tuna, whole eggs, nuts. I am following all the instructions. I want to get well.
Today I have a slight burning sensation in my spine in the thoracic region. I do not know what this means. It could be simply muscle fatigue from compensating differently for a "dead" leg and foot. The body will adjust to still do what it needs to do, even if that means moving in new ways that aren't exactly natural or ideal.
There's a whole lot of "hurry up and wait" in this scenario. Wait for the steroids to help the inflammation. Wait for the next MRI (which will be on March 11) to see if inflammation is down and hopefully--NO NEW LESIONS ARE FORMING.
If the steroid therapy does not help--or doesn't help enough--there is a possibility of doing a blood plasma replacement. In this case, my blood plasma would be removed and replaced with much donor plasma. The idea behind this is to remove the aggressive autoimmune antibodies my body made--and which might still be attacking me--with antibody-free plasma, and hope for a reset. I am open to that therapy and will welcome it if that is what needs to be done.
I have beautiful friends in the Body of Christ who are taking care of me. Meals are coming about every 3 days--generous meals--and this helps so much as being on my feet to cook in the evening is the most painful time of day. Prayers are being poured out. Offers to help with groceries and visits and anything needed are constantly on the table. I am thankful. I need my Tribe.
I don't yet know how I actually FEEL about all of this. I'm not asking "Why?" right now. I'm just seeing this truth: "This happened." I want very much to get well and not hurt like this. I want to return to service and I want to enjoy my life, of course, but I can't do much in the way of processing until some more information comes in. So I desire your prayers over me as much as you are willing to give them, and I will update on this blog to reach as many people as possible whenever I have anything relevant to share.
Thank you to all who took the time to read this.
--Rebecca
11 comments:
I am so so sorry for this pain,Rebecca.
Rebecca, I can’t tell you how much this breaks my heart for you. I’m praying that God will take your body and heal you in a way that he can keep using you for his glory. Your a wonderful guiding light for so many ,ecspecially for me . You’ve been there when most weren’t. So pleases,please let me know what I can do for you to help make it easier for you.i love you
Dear One, You are the second of my friends with this disease. I will be praying grace in the journey, courage for everyday, and comfort for your heart. Please take care - listen to your body.
I will pray for you and your family, Rebecca. Hugs. Tiffany Douglas.
First off, you can too dance. I have seen it happen.
Second off, I'm just catching up on this, but I am thinking about you, concerned, but hopeful. Please know that I. we all, love you!
I could not read this without wincing the entire time. Thank you for sharing though.
It sounds terrible physically and psychologically. I am so sorry to hear that you are going through this and will absolutely be praying. Please continue with updates on your situation when you can. I'm glad that you have at least found a proximate diagnosis and cause.
Rebecca, thank you so much for all these details...so detailed, you are! It is painful to read and I keep finding myself wanting to scoop you up and just somehow be able to comfort you. And your girls. I know it's hard for them to see you hurt. We are all four praying for you and I'm going to get food to you soon. Much love. Christine (+ Dave)
I have Acute Ideopathic Transverse Myelitis that I acquired after having been bit by a brown recluse spider while hiking out on the Eastern end of Long Island, NY know as Montauk.
It rendered me paralyzed at the T4 portion of my vertabrae. One further segment and I would have stopped breathing.
Oh the above was published by Bill Seery
I worked with my local legislator and we had legislation was passed making each June 6th Suffolk County Transverse Melitus Awareness Day.
Thank you all for your comments and taking time to read.
Bill Seery: I read your story online. I'm thankful that you did not get affected one vertebrae higher! Did you actually see the spider that bit you? I did not, and so I can't be 100% certain. My general practictioner does not believe it was a spider bite. The infectious disease doctors and the neurologist are willing to say it might have been. They documented it but can't test for any venom at this point. But I keep hearing these stories. "It started with a puncture wound that looked like a brown recluse." And the enzyme in brown recluse venom (sphingomyelinase) is named by scientists for its purpose: to break down nerve myelin. Seems too likely to me to be dismissed. I do hope you are improving. Please feel free to share more about your story. If you'd like to email anything specific, I am willing to be in contact, compare notes, share experiences. Maybe one of us will find something that helps. BTW, I am trying a homeopathic supplement in addition to the more common ones recommended by the neurology team. The new one is called Lion's Mane and is derived from mushroom mycelium. I'm only on day 2 of using it so I can't say whether it will have an effect.
Let's chat OK ,,
Post a Comment