I get asked lots of questions, most of them repeatedly because it's such a rare condition and no-one really has all of the facts. Every sufferer is different and every recovery is different.
In my post today I'm going to attempt to answer some of the questions that I get asked in a way that people will understand. However, please remember, not every who has Transverse Myelitis will be affected in the way that I am. I will also include information from the Transverse Myelitis Society throughout my post.
The first question asked is
"what is Transverse Myelitis?"Well, everyone who has Transverse Myelitis has had some sort of inflammation in their spinal cord which has damaged the nerve coating, myelin. The damage can be on any part of the spinal cord, it can also be in several parts of the spinal cord. Depending on where the damage is a part of the body will be affected. If the inflammation also incurs in the brain then the diagnosis will more likely to be Multiple Sclerosis.
"Can you be fixed with an operation?"
The answer is no. But some sufferers do have operations later on to release ligaments that have been trapped by the condition. For example, sometimes the feet go into a spasm and the sufferer is unable to put their foot flat on the floor, then they may have their Achilles tendons lengthened to assist the foot in returning to a more normal position. A sufferer may also have a baclofen pump inserted because the medicine has strong side effects and works better for some if it is directed into the spinal fluid to ease muscle spasms caused by TM. Some sufferers also need surgery to help their bladders work properly.
The spinal cord damage itself cannot yet be fixed by operation.
"Is it Contagious, are your children more likely to get it?"
" Can you be fixed by physio therapy?"
A lot of sufferers do have neuro physio therapy to help ease their condition. I have mine weekly at the moment. My therapist has told me that they can teach me to walk again, fire up the nerves that are stopping my brain communication with my body. It's like learning from scratch, like a toddler, because what I knew before has been through the damage to my spinal cord. I can also learn to deal with the pain and discomfort.
"Do you take medication?"
Most sufferers do, so do I. The most common medication usually given at the beginning of the attack is steroids. They help a lot in getting the body to spring back into action. Until I had intravenous steroids I could not move my legs, or feel anything from the waist down. The most common medication is a neuropathic drug called Gabapentin or one of the other forms of Gabapentin. You can build up to quite a high dose of these drugs but they do come with side effects. Another common drug is Amitriptyline which has an effect on the chemicals in the brain. It also helps me sleep so I only take it at night. Painkillers such as paracetamol and ibuprofen can also be taken regularly to ease pain. I also take Naproxen, a stronger painkiller. That's as far as my knowledge of treatment drugs goes, but I know that some may also have stronger painkillers and even plasma exchange to help their symptoms.
"Will you get better?"
I can only hope, the truth is no-one really knows. Initial recovery takes from two to eight weeks. As it's all so vague I'm going by what I've learnt from other sufferers. The initial recovery generally means from total paralysis to being able to move at all. The next stage is learning to walk again and this can vary greatly. Then you have to factor in where the damage of the spinal cord is. Some people don't even have their legs affected, but they can have the use of their arms and hands affected. Some are affected in their chest area which means they have difficulty breathing, eating and drinking. Some have issues around the middle which means they have digestion, bowl and urine removal difficulties. Some are affected in more than one area. Some are affected in just a small area, like just their hands or feet.
I've heard said that the quicker the attack the longer the recovery. Some are ill for a long time before being diagnosed with TM, others, like me, have the symptoms come on rapidly and severely. I've seen people making a massive recovery in just a few months, and others are still struggling for a good recovery many years later.
"What does it feel like?"
I was asked this by a friend suffering from disc problems in her cervical spine (neck.) She was telling me about how she was hurting and expected me to be feeling similar. I don't think it is.
My inflammation was in my cervical spine and also around the Thoracic spine (middle back) but quite low down my back, almost at my lumber region (lower back) The cervical means I have problems with my arms and hands, the thoracic means I have problems from the waist down.
It is really difficult to describe how I feel. Pins and needles is the most obvious explanation but even that doesn't fit properly.
Imagine sitting on the floor with your leg bent beneath you for a long while, then when you stand up you feel like you are going to fall because your balance has gone and your leg is tingling wildly.
Yes, it feels like that in my legs all the time. My feet are slightly worse, I cannot feel the floor properly.
My arms are less affected, I have pins and needles but not so severe and my fingers ache. I cannot lift anything vaguely heavy like a saucepan.
Also, I can't bend properly. This is even difficult for me to understand. I can sit properly with my knees bent, so why can't they bend when I'm standing. If I'm on my feet then my knees want to stay rigid and it takes an awful lot of effort just to bend them a little to walk without dragging my feet.
I cannot stretch up to a high cupboard, or bend to a low cupboard with out extreme stress.
On one of the support groups I visit for TM someone once mentioned Banding and I though yes, that's what I feel. I don't know if it was the same for them but the word is a good description of the feeling I get in my body where I feel like I'm enclosed in a tight elastic band. It's like my skin (the band) is getting tighter and tighter and every movement is pulling on it like an elastic band. It's not continuous, or all over at the same time, but it comes and goes throughout the day. It's more noticeable at night when I'm trying to sleep. I only get it in my lower body from the point where my spine is affected and down. Mostly I feel it in my feet and legs, but sometimes I feel it around my middle which crushes up against my ribcage and makes breathing difficult.
I also have a weird sensation in my skin which causes pain if anyone brushes against me, and I can't wear certain materials without them feeling like they are ripping into my skin.
I also have a lot of numbness remaining in my hip and waist area which means I find sitting down on anything hard difficult or uncomfortable. I also have bladder and bowel issues due to this numbness, but thankfully I'm managing without intervention.
"How Did You Get It?"
IN hospital I was tested (blood tests and lumber puncture) but they could not find any cause for my TM, so it's idiopathic. It was not caused by any type infection, although some sufferers find it develops after an infection.
"How were you diagnosed?
I was incredibly lucky, a lot of sufferers do not get diagnosed correctly so quickly. The onset of TM can be like so many other conditions and it is often mistaken for MS or Guillian Barre's Syndrome. A the hospital where I was admitted my care was transferred to one of the leading neuro consultants for Transverse Myelitis so I was diagnosed immediately after my MRI scan. When I went to my GP after I'd been released from hospital he had never heard of TM.
I had mild back pain, mostly across my shoulders which I noticed while driving. This started a couple of days before my attack. Then on the morning of January 1st I had pins and needles in my right leg and arm. I couldn't shake them and I started to get worried. Once I started feeling them in my left leg and arm I decided something was wrong. Pins and needles can often be a cover for pain and I began to think that something was very wrong. By the time I was taken to a cubicle in A&E I was paralysed in both my legs and arms and completely numb. The Drs where sticking pins into me and I could not feel them at all. The lifted my limbs and I could not hold them so they flopped back down. The first words mentioned were MS but the MRI ruled that out and I was diagnosed with TM.
I hope that I have in someway enlightened you about Transverse Myelitis. If you would like to know more you can always visit the TM site www.myelitis.org.uk
Why do we have a TM awareness Day? Well I think this last Key Fact Explains it. We need better treatments, the ones currently available do help but there are two thirds of everyone who has ever had TM still suffering, which means more needs to be done. We all dream of a cure for TM, it may be possible one day.