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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.
What I have is Idiopathic Transverse Myelitis, my doctors have not yet pinpointed a cause of the inflammation, although I do have some test results outstanding. I was considered an unusual case as I had no symptoms before the attack. I had lesions, or inflammation in the cervical and thoracic areas of the spine meaning that I was paralysed in both my arms and legs. Fortunately the inflammation was not severe and my arms were back to full strength within a couple of days. my legs took a little longer and it was day ten before I started to regain strength in my left leg. My strength is almost back to normal now although this doesn’t mean I am recovered from the attack.
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.
Anyone who has a child with autism will have experienced that inexplicable feeling of confusion when they receive their child’s diagnosis. There will be relief that there is an answer, a reason for their child’s differences, combined with a sense of feeling lost as to what to do next.
When I first heard that diagnosis many years ago I began to read. I went to the library and read anything and everything I could find on Autism. To be honest a lot of it didn’t really feel as though it was written about my child and it really didn’t help.Things have changed a lot since then and now you can find a lot of information on the internet. You can also find other parents in the same situation to talk to which helps immensely.
I was recently sent a copy of How to Help Your Autistic Spectrum Child by Jackie Brealy and Beverly Davies to look at. It’s been a long while since I read an actual book on the subject of autism but it’s so good to have it to hand to dip into whenever I had the time and refer to whenever I needed to.
The subheading of the book is ‘Practical ways to make family life run more smoothly.’ Now, if you do have an autistic child at home you will appreciate any help at all to make life run smoothly. Life with autism can be anything but smooth running.
The book begins by outlining the key features of an autism spectrum disorder and how you can spot if your child has one. It then goes on to offer help and advice in all sorts of areas such as communication, behaviour and obsessions.
The book talks about schools, how to choose the best type of school for your child and how to help your child to cope with school life. It outlines the pros and cons of choosing a mainstream school or a special school or whether home schooling would be best for your child. It also gives some advice on what to do when problems arise at school such as bullying.
There are also chapters on treatments and therapies and getting help from professionals. The book also goes into teenage and young adult life for someone on the autistic spectrum.
Unlike many books on autism I like how this book has a very personal feel. The authors know what it’s like to be the parent of an autistic child and the book is interspersed with little personal stories. The book is also a journey from infancy to adulthood and tells you how you can cope with everything that happens in between. It is written in a way that is easy to understand and would suit all kinds of parents.
To conclude, I would recommend this book for any parent of an autistic child, no matter where they are on their journey. You can read from beginning to end or just dip and in and find useful information that you need at the time. It’s not a huge book, the information is concise and practically presented.
You can buy How to Help your Autistic Spectrum Child in paperback on Amazon for £12.99
New Years Eve was peaceful for us, we did the same as usual, enjoyed some snacks, a bottle of wine and watched Hootananny on the TV. We were a little subdued as my Father-in-law had passed away suddenly the day before and it had been a big shock, particularly as I was with him at the time.
I went to bed feeling fine, I didn’t even feel tipsy, just tired.
I woke up New Years Day with pins and needles all up my right side. I thought they would go away and got on with my day, busying myself as much as possible to take my mind of them. They didn’t ease so I turned to Facebook and asked my friend for tips on how to get rid of pins and needles, but nothing suggested worked at all.
Around 11am I decided to call 111. I just wanted advice because these didn’t feel like normal pins and needles, they were overwhelming and even numbing. After taking my history they decided to send out an ambulance and I was like, what! I only have pins and needles.
The ambulance came checked me over and wanted to take me to A&E. “but I’ve only got pins and needles” I cried, I don’t want to go to hospital. So, they left me.
An hour later the pins and needles started on my left foot and I actually felt them rising through my left leg and starting in my left hand.
This really isn’t right I thought and sheepishly called my brother and asked him to take me to A&E.
I walked into A&E just before 3pm. It took ages to be seen. I went to the loo and felt a bit shaky but ok. At 5pm I’d been to give my details to a nurse and they finally called me to a cubicle. But I couldn’t stand up or walk. While on the cubicle bed I quickly lost all sensation in my arms and legs apart from pins and needles. I had no strength at all and was paralysed.
I was taken for an MRI but once inside the machine I had a panic attack so I had to come out. I was admitted to a ward.
The next morning I was taken to the MRI again but with sedation. I was in there for half an hour while they scanned my head. Then I came out for two minutes before they put me back in for fifty minutes to scan my spine. They wanted to put dye in and put me back for twenty minutes but I really couldn’t take any more so I was taken back to the ward.
They found inflammation on my spine and called it Transverse Myelitis. In the UK it’s pretty rare unless you have Multiple Sclerosis, which I don’t. I’ve had blood tests and a lumber puncture, where they take out some of the spinal fluid, but so far no answers as to why this happened to me.
I spent twelve days in hospital, five of them on intravenous steroids.
The day after my paralysis I regained my right arm, then slowly afterwards my left. A few days later I started to gain strength in my right leg and ten days later a little strength in my left leg. So, I’m still not walking unaided but I’m so grateful that I’m not having to be lifted anymore.
The pain is continuous and the pins and needles have not stopped, not for a second. Everything feels weird and I’m hyper sensitive to touch. The symptoms affect me from the waist down, and both arms. I have never in my life felt so awful, but I’m staying positive that I will make a good recovery. No-one knows if I will recover, or if I do, how long it will take. It could be weeks, months or even years. I may be permanently disabled.
I feel like my life is on hold at the moment. I’m taking each day at a time and feeling happier now that I’m home and can be with my children, even if I can’t do anything for them. At least I can speak to them, read to them, and cuddle them, so long as they are gentle with me.
Who would have thought that pins and needles could be so serious!