Last year I had no idea what Transverse Myelitis was. This year it has taken over my life.
What is transverse myelitis?Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.
Symptoms of transverse myelitis include a loss of spinal cord function over several hours to several weeks. What usually begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet can rapidly progress to more severe symptoms, including paralysis, urinary retention, and loss of bowel control. Although some patients recover from transverse myelitis with minor or no residual problems, others suffer permanent impairments that affect their ability to perform ordinary tasks of daily living. Most patients will have only one episode of transverse myelitis; a small percentage may have a recurrence.
The segment of the spinal cord at which the damage occurs determines which parts of the body are affected. Nerves in the cervical (neck) region control signals to the neck, arms, hands, and muscles of breathing (the diaphragm). Nerves in the thoracic (upper back) region relay signals to the torso and some parts of the arms. Nerves at the lumbar (mid-back) level control signals to the hips and legs. Finally, sacral nerves, located within the lowest segment of the spinal cord, relay signals to the groin, toes, and some parts of the legs. Damage at one segment will affect function at that segment and segments below it. In patients with transverse myelitis, demyelination usually occurs at the thoracic level, causing problems with leg movement and bowel and bladder control, which require signals from the lower segments of the spinal cord.
I am still unable to function normally because my hips are not yet recovered and my nerves are still damaged. I still have the pins and needles that warned me of the attack. Severe numbing pins and needles from the waist down, and less severe in my arms. Nothing feels 'right', I am hypersensitive to touch, heat and cold.
When my attack began and I had pins and needles I tried everything to get rid of them, even pulling my ear lobes...honestly there is a You Tube video explaining how to do it! If you had told me then that I would still have pins and needles three weeks later I probably would have cried. Now, I find that I am used to them. The sensation is horrible but it's become a part of me now. Of course I still hope that it will stop someday, and I'm taking medication that is supposed to help. I can increase the medication every fortnight until I reach the maximum dose. I still have a way to go so I'm hopeful they will work eventually.
The weirdest feeling...when I lie down in bed it feels like my legs are floating!
I hate the way my hands feel. I'm happy that they are working now, but still everything feels strange. It's difficult to explain but I don't feel like I'm in my own skin.
I can stand and walk with support. The hardest thing is not being able to feel the floor beneath my feet properly. At first I had to concentrate really hard to get my feet and legs to move when I wanted them to. It's coming back now and I don't have to concentrate as hard, but they are not working properly. The consultant at the hospital referred to my walking as a spastic gait. I think it has a lot to do with my hips not working properly.
All respect to toddlers! Learning to walk is not easy.
I have pain, lots of it. I get shooting pain in my back, pain in my neck and arms, pain in my legs. The only way I can describe my feet is they are like I'm wearing really tight shoes. I'm sure we've all felt it, you've been on your feet all day and your feet feel like they are going to break out of your shoes by themselves if you don't take them off soon. It's such a relief to kick those shoes off at the end of the day...only, I'm not wearing shoes.
I get tired. Everything is an effort. I can take myself to the toilet or have a shower, dress myself even, but it all takes twice as long as before and when I'm done I'm exhausted. I can help in the kitchen for a while, I have a trolley walker for carrying things around and a chair I can rest on. It's still too much for me most days. I just don't seem to have any energy.
The worst thing is not knowing when I will recover, or even if I will recover. I'm optimistic, I always have been, I'm sure I can beat this and be me again. I just wish I could put a timescale on it. The recovery times are so varied, no two people who get TM are the same. Some stay paralysed forever, some recover with minor ailments, some have relapses, some recover really well. I just don't know which one will be me and that is frustrating.