Onset

This is more detail than I would go into with most people, but “TMers” often like to hear the full stories of other TMers. When we first got a computer and I found the Transverse Myelitis Internet Club, it helped a lot to read other people’s stories, compare notes, and see similar symptoms. So, for other TMers and anyone else who might be interested, here is the non-condensed version. 🙂

Friday, Sept. 1, 1995, started out like any other day. I had gotten up early, taken a shower, gotten the children up. We were at the end of our first week of our second year of home schooling. My husband was teaching the kids their Bible lesson downstairs around 7:00 a.m., while I was upstairs making lunch for him to take to work. Usually, when they finished, the kids would come up and eat breakfast, we’d get dressed and do a few chores, then start back into the rest of our school day after my husband left for work.

But as I was making his lunch, my left hand began to feel a little funny, like maybe I had slept on it wrong. I didn’t pay much attention to it, but flexed it and shook it off and on while I went about my business. At some time later, I began to realize that that numbish feeling was growing, both in area and in intensity. Then my legs began a similar odd feeling. A little frightened at that point, I called downstairs to my husband. He came up and asked me if I had eaten anything, since I have a low blood sugar. I hadn’t, and tried to eat a few bites, but just did not have any appetite. Meanwhile those odd feelings were growing. I called my doctor, who said his waiting room was full, and advised me to go to the Emergency Room. There was a small hospital in our little town or a bigger hospital about 45 minutes away in Atlanta: he let me choose where to go. I decided to go to the nearer one so they could assess the situation and hopefully get it stabilized. Somewhere in this time frame I also began to having trouble using the restroom: I would feel like I needed to go, but when I went to the bathroom, nothing happened for a very long time. Finally I did get a little relief, but I felt like I couldn’t void completely.

By the time we left for the hospital, my arm was numb all the way up to my shoulder, the numbness in my legs was growing, and I couldn’t walk on my own.

I remember being very surprised that the hospital ER was nothing like what you see on TV: no one was bursting through the double doors with a gurney to take care of me. Instead there was paperwork and waiting and waiting. We had brought our children with us, because at ages 11, 8, and almost 2, they were too young to be left at home alone, and we didn’t know any of our neighbors well enough to leave them. My husband called our pastor and asked if he could arrange for someone to come and pick up the kids from the hospital, and a dear lady from church did. Finally we were called back to an examining room. The doctor did an EKG and said that I wasn’t having a heart attack (I didn’t think I was: I thought I was having a stroke. That was the only thing I knew of at the time which would cause sudden numbness.) The hospital did not have an MRI unit except for a mobile one that came about once a week – we didn’t happen to be there on the day it was at the hospital. There was no neurologist on call, so the hospital made an appointment for me to see a neurologist that afternoon. On my discharge sheet it just listed the arm problem, none of the other symptoms. I don’t know if the doctor didn’t catch that there were other symptoms, or if he just listed the one.

We returned home and I tried to eat again, but could again only manage a few bites. The numb feeling in my arm was being replaced by a squeezing pain, like a blood pressure cuff that was on too tight. The numbness in my legs had crept up to my lower torso – it felt like fingers of that odd feeling were reaching up further onto my abdomen. The bathroom problems continued.

When we finally reached the neurologist’s office, my husband went inside to get a wheelchair for me. He wheeled me up to the receptionist’s window….where we discovered that they couldn’t see me because they did not accept our insurance. My husband called the insurance office to explain what was going on, to explain that we had followed the procedures our insurance company laid out, to make the point that they allowed out-of-network doctors if referred by one of their doctors…..but they would not budge. (I was in the wheelchair all this time, and we were still at the receptionist’s window. I felt very embarrassed and conspicuous that the whole waiting room was overhearing all of this, but I had the sense that they were pulling for us.)

Finally we called my family physician back, explained what had been happening since the last time we called, and asked him, “What we do now?” He referred us to the bigger hospital in Atlanta that was farther away – I guess we should have gone there in the first place.

So we drove over, sat and waited and filled out more papers, and finally saw a doctor. They ran a CAT scan and determined I was not having a stroke. They admitted me to a room at around 10:30 that night – and this had all started around 7:30 that morning. It had been a very long, wearying day.

In a touch of irony, the neurologist on call who saw me in the hospital was from the practice that has refused to see me earlier that afternoon.

Because this was Labor Day weekend, there was no one to run the MRI until Tuesday. So what they did instead was a myelogram. It is not fun. They inject contrast material into your spine and then turn you in all different directions, tilting the table up and down, while they take x-rays. They took some spinal fluid for evaluation while they were there (I was glad they did that all at one time and not as two separate procedures.) Over the next few days they took blood work to test for a variety of things. I did have an MRI several days later. The neurologist on call the first couple of days told me they thought it was something viral. But to rule out other possibilities, they checked for everything from lupus, MS, myasthenia gravis, Vitamin B 12 deficiency, Lyme disease, and a whole host of other illnesses. They put me on a three day course of steroids to reduce swelling on the spinal chord, and began some elementary physical therapy.

The numbness and pain were still there, but didn’t progress any further. My left hand and right calf were a little swollen. The bathroom problems continued. I was extremely tired, sleepy, fatigued very easily, broke out into a sweat just sitting up for very long, and felt somewhat nauseated, and though it helped to eat, my appetite was off.

On my eighth day in the hospital, one of the neurologists who had been seeing me finally gave me a diagnosis. The x-rays and MRI looked good, the spinal fluid was clear, all of the blood work came back fine except for one test showing I had been exposed to the Epstein Barr virus in the past (which he said was not a factor now) and another that showed my ANA antibodies were elevated. High ANA antibodies are an indication of lupus: mine were not high enough to indicate lupus, but needed to be checked again in a few months. He said they had ruled out bone problems on the spine, lupus, MS, and a whole host of other possibilities. The diagnosis he gave me was transverse myelitis (which I had never heard of before – most people haven’t.) He said that in TM they believe a virus attacks the spinal cord: where it hits determines what symptoms you have. He wanted to put me in the rehab unit of the hospital, but the insurance would not pay for that. So he sent me home and we were to arrange for physical therapy.

We were able to talk our insurance company into allowing me to have physical therapy at home since I was unable to drive and their PT office was 45 minutes away. For about a week after getting out of the hospital, I was extremely fatigued. My husband, Jim, needed to return to work as he had used up all of his paid time off, and another homeschool family arranged for their teen-aged daughter to come over in the afternoons for several days. After about a week I was able to resume a scaled-back homeschooling schedule. PT continued for 3 months, 3 days a week. The physical therapist was a petite lady and very sweet. She didn’t mind at all if the kids came and wanted to watch or ask questions.

Over the next three months I progressed from a walker to a cane to walking alone, though wobbly. My balance has been greatly affected. For a long time I had much more trouble with balance standing still than walking. My knees and ankles sometimes “go out.” The fatigue lessened greatly but is still a factor. The numbness has subsided a good deal, but is still there and flares up from time to time. I have pain right between my shoulder blades that flares up from time to time, like a muscle cramp with a vengeance. The pain in my arm also flares up from time to time. My right leg does not feel cold or pain. I still have assorted bathroom problems –that has probably been the most frustrating for me. I have odd little muscle twinges and twitches or tremblings. That used to just about drive me crazy: the way my neurologist put it was that my nervous system was affected, making it more responsive to stimuli. So whereas beforehand, I had a little twitch in my eyelid sometimes, now something like a sneeze can set off a shower of twitches all around my eye. Stress, illness, not getting enough rest can all trigger a flare-up, but sometimes symptoms flare up greatly for no apparent reason at all.

When I first began to be able to drive again, one of the first things I did was to go to the library and try to look up information about TM. But there wasn’t much that I could find: my oldest son found one two-page article in one book. So I began to look up some of the other diseases that the doctor had ruled out: MS, lupus, etc. It scared me because there were some similarities, especially to MS. MS is probably the most closely related to TM; in fact, the neurologist had said that there was a 20% chance of this “turning into” MS, but, he said to concentrate on the 80% chance that that wouldn’t happen. Since there is not a particular test for TM, for a long time I feared that they missed something, that I really did have one of these other things.

A little over a year later we got a computer. As I began to learn how to use it and what the Internet was all about, one day I did a search for the words “transverse myelitis.” I discovered something called the Transverse Myelitis Internet Club, a subscriber list for TM patients, family members, and caregivers. I signed up, and I was so amazed to find people with the same symptoms, experiences, odd feelings, and problems I had. I sent in my “story” and had an outpouring of response. The TMIC has been a lifeline ever since.

As a Christian, of course I look at life through a certain “lens” or world view. I don’t remember for sure, but I don’t think I ever asked, “Why me?” If we have to ask that, we should ask, “Why anybody?” I believe that God created the world and people perfectly, but when sin entered the world, God’s creation was marred and will bear the consequences until the day He redeems it. So, the short answer to why disease and disability and pain and suffering are in the world is that it is a fallen world. We’re not in heaven yet, where “there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away” (Revelation 21: 4).

I believe that God has a purpose for everything He allows. He’s not capricious or whimsical in His dealings with us. “But though he cause grief, yet will he have compassion according to the multitude of his mercies. For he doth not afflict willingly nor grieve the children of men.” (Lamentations 3:32-33). Whatever He does allow, He promises His grace for (II Corinthians 9:8: “And God is able to make all grace abound toward you; that ye, always having all sufficiency in all things, may abound to every good work”) and He promises that it will work out for our good (Romans 8:28: “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”)

I can say, with the Apostle Paul:

For this thing I besought the Lord thrice [more than thrice in my case], that it might depart from me.
And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong” (II Corinthians 12:8-9).

I’ve so often felt that I could serve the Lord better without the hindrance of TM: yet He has allowed it, has a purpose in it, and promises His grace for every moment as I depend on Him. A few books that have helped me that others might be interested in are: Rose From Brier by Amy Carmichael, A Path Through Suffering by Elisabeth Elliot, and When Heaven Weeps by Joni Eareckson Tada and Steve Estes.

Since this post is already so long, I putting the other “lessons learned” in separate posts: Fear, God’s Help, and Unanswered prayers and reasons for suffering. Each of those posts is much shorter, I promise. 🙂

16 thoughts on “Onset

  1. Barbara,

    I just have to tell you this is awesome. I’m not sure how you did it as I am a bit computer-challenged – but I love it! I need to get my tired TM body to bed, but will read more tomorrow.

    Blessings and hugs
    Linda

  2. Hi – thank you so much for the link to your blog. It’s always so interesting to hear another’s story when you hvae been through it yourself. You write so clearly and nicely 🙂

    Looking forward to reading more !
    Love
    Shirley

  3. Thanks, Linda and Shirley! 🙂

    Linda, I’m somewhat computer-challenged as well. My 22-year-old son is my in-house computer consultant, and I wanted to do this before he left the nest so I could get his help. 🙂 I had asked a number of other people who had blogs what service they thought was best, and Word Press came up again and again. It’s free, so that helps! 🙂 And it is pretty easy to use. I was able to set it up myself and then just needed to ask my boys for help in just a couple of areas (like how to make links.)

  4. For this thing I besought the Lord thrice [more than thrice in my case], that it might depart from me.
    And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me

    Barbara,
    I do not understand this passage and wish you would explain it to me. Your Blog is lovely and interesting. I too think that I would serve Our Lord better if I could get out of this wheelchair and walk, bur ir is obvious that he does not think the same way. Please help me understant…

  5. Hi Jude,

    I don’t know how well I can explain it, but I’ll give it a shot. 🙂 In the verses ahead of those in II Cor. 12, Paul speaks of having a “thorn in the flesh.” There has been much speculation as to what that was exactly. But whatever it was, Paul prayed three times for the Lord to remove it. God said no, that His grace would be sufficient for Paul, that by relying on Him for strength Paul would be made strong. Then Paul goes on to say he “glories” in infirmities, needs, persecutions, etc., because that makes him realize his own weakness and his need for God’s strength. When we think we’re strong, we don’t rely on God. But when we’re weak in some way, we know we have to rely on Him because we have no strength on our own. Hope that makes sense. 🙂 There is a hymn I posted earier today based on these verses called “In My Weakness.” You can find it here: https://barbarah.wordpress.com/2006/09/04/in-my-weakness/

  6. Barb,
    thank you so much for your inspiring words of encouragement. I too have TM. Was DX in December of 2005.on the 19. The hospital was trying to get all of the non critical patients out of the hospital for the holidays and I was one of them. So I learned what I know about TN through reading blogs from friendly folks such as yourself. I thought I had a stroke. But it wasn’t that at all. I truly beleive God is testing us to see how much we can take. For look what his son had to endure. I am not blaming God for what is wrong with me, all I am saying is that this TM is in his hands and I put it in his hands. I am on no meds, pt, exercise regimime, or special diet as of yet. I do go see a neurologist on the 13th of this month, so that my change. You know I didn’t understand the bladder and bower problems people were haveing untill it happened to me, so now I do, so wish me luck with that one. It would be nice to communicate with a nice person of GOD while going through this, so if you find time, email me sometime
    Thanks again for the enlightening artilcle

    Vickie

  7. Hi, Vickie,

    I just tried to e-mail you, but it didn’t work — I got a message saying “No known member.” 😦 I hope you’ll come back this way again.

    Here’s what I wrote in the e-mail:

    Hi Vickie,

    It was so good to hear from you! I’m so glad you found me.

    I found that my first year was the hardest, but also had the biggest recovery. Even now 11 years later I still experience some small improvements — as well as some good days and some bad days. 🙂 That goes with the territory, I guess.

    Let me share with you some other resources, if you haven’t found them yet:

    The Transverse Myelitis Association
    http://www.myelitis.org/

    The Transverse Myelitis Internet Club:
    http://www.myelitis.org/tmic
    (This is where I first found other TMers. It’s a great place to ask questions and compare notes with others.)

    The TMA Forums:
    http://www.myelitis.org/phpBB2/

    Besides TM, I am always interested in people’s spiritual journey. If you don’t mind sharing how you came to the Lord, I’d love to hear it. I shared my “journey” on my blog at https://barbarah.wordpress.com/testimony/ (not to sound impersonal by just referring you to my blog — it’s just that I already wrote it out there. :))

    Barbara

  8. Hi Barbara,
    I am so thankful a came across your blog. I’ve recently been diagnosed with TM. I am 45 and am having a hard time coping. I am so afraid that the doctors are missing something and that it is worse than even TM. I had a MRI and they found an lesions/abnormality at T4 and a few spots on my brain. I’ve seen 3 different nuerologist and I’m still afraid that they don’t really know and that I’m in a holding patern to see if the spot at T4 changes. My symptoms have been crazy and so many. I don’t even want to tell them all of the symtoms, because they probably think I’m crazy. I am a christian and I know this has brought me closer to the Lord, but I’ll be honest some days it seems so hard to hang on. I think I need to talk to others that have gone through this and I know I need to continue to pray and believe that god will get me through this. Well, Thanks again and take care.
    Jenifer

  9. Pingback: Time Travel Tuesday: Accidents or illness « Stray Thoughts

  10. Hello there
    Everything you mention is so familiar. I was diagnosed with TM 2004 and after 10 weeks managed to go back to work as a nursery nurse although i could only manage a 3 hour day instead of the usual 7 hours. Symptoms continued to be up and down until eventually, following a car accident in 2008, I had an exacerbataion of TM which unfortunately has left me in a wheelchair unable to co ordinate my leg movements. I had intensive rehabilitaion for 16 weeks which helped me to stand with aid and weightbear for transfers. I am still unable to walk and have repeated flare ups which cause terrible fatigue, pain, loss of sensation and of course frustration more than anything. I am no longer able to work, and need care throughout the day to assist with transfers. I dont know whether I am fortunate or unfortunate to remain strong and as independent as possible because this has had an adverse affect on my health. Last year through unassisted transfers I have fallen many times. Some resulting in fractured pelvis, broken ribs, torn shoulder tendon and sacro sprain. This has left me in an unfortunate position of now needing to be hoisted to allow my body to rest.
    I would love to hear from you to see how you are now.
    I enjoy reading your article and I do agree that faith does help although sometimes we may not understand the reasoning for all of our suffering.
    Thanks for taking the time to read this.
    Take care.
    Sue

  11. Hello there
    Everything you mention is so familiar. I was diagnosed with TM 2004 and after 10 weeks managed to go back to work as a nursery nurse although i could only manage a 3 hour day instead of the usual 7 hours. Symptoms continued to be up and down until eventually, following a car accident in 2007, I had an exacerbataion of TM which unfortunately has left me in a wheelchair unable to co ordinate my leg movements. I had intensive rehabilitaion for 16 weeks which helped me to stand with aid and weightbear for transfers. I am still unable to walk and have repeated flare ups which cause terrible fatigue, pain, loss of sensation and of course frustration more than anything. I am no longer able to work, and need care throughout the day to assist with transfers. I dont know whether I am fortunate or unfortunate to remain strong and as independent as possible because this has had an adverse affect on my health. Last year through unassisted transfers I have fallen many times. Some resulting in fractured pelvis, broken ribs, torn shoulder tendon and sacro sprain. This has left me in an unfortunate position of now needing to be hoisted to allow my body to rest.
    I would love to hear from you to see how you are now.
    I enjoy reading your article and I do agree that faith does help although sometimes we may not understand the reasoning for all of our suffering.
    Thanks for taking the time to read this.
    Take care.
    Sue

  12. Thank you for sharing your story. I’d never heard of TM before, but I’m glad that I know about it now. It sounds very frightening. I have Fibromyalgia (painful & limiting but not nearly as severe as your problems) and have had a range of unusual other problems. Your life can change so quickly, and what was once easy (like getting dressed) suddenly becomes a major ordeal. I think it’s hard for people to understand what it’s like to have a chronic problem/illness about which little is known and for which there may not be a clear-cut cure. I really sympathize with you.

  13. I have TM iv had it for 2 weeks now and I’m struggling. It started very suddenly and progressed quickly, literally over night, I was just wondering how you cope?

    • I’m sorry to hear of your TM diagnosis, Bekki. Mine came on suddenly and quickly, too, and it was a very scary time. Thankfully I had a good doctor and a supportive family and a helpful church family. Finding others with TM online at the The Transverse Myelitis Internet Club (http://www.myelitis.org/tmic/) was a major help, too — it was wonderful to be able to compare notes with others going through the same thing. There is a TM Facebook group as well, but I am not active in that.

      But the biggest help to me was praying, spending time in the Bible, and relying on God’s help, knowing that He had a reason for allowing this even though I didn’t know what that reason was. So often God brought just the Scriptures I needed for the day. I wrote more about that here: https://barbarah.wordpress.com/transverse-myelitis/gods-help/.

      I hope you have as much as recovery as possible, Bekki.

  14. Hi there. Beautifully written. I’m sorry for your struggle. I do have a question….if your MRI was clear, how do they know it is/was TM? Shouldn’t you have had a lesion?

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