Learning to Accept

My name is Lucy and I am 22. I was diagnosed with TM in August 2013, a few days before I turned 20. My story started at least 9 months before I received an actual diagnosis, and now I am slowly learning to accept and live with this condition.

It was at least 9 months from the start of my symptoms before I received a diagnosis. At first I noticed that I was getting tired and worn out more quickly and I had to urinate a lot more frequently, and when washing up afterwards, my hands were really painful in the palm like they were burning or being ripped open by glass. At first, I just thought it was the soap that I was using. I then noticed that while going to the gym and using the exercise bike my right foot felt like pins and needles all over it all the way up to my ankle, which I initially thought was because my trainer was too tight. The pins and needles sensation progressed over a period of a few weeks up to my knee but after a few minutes it would ease off. I used to swim 3 times a week as well for about an hour until I noticed that I would experience really bad neck pain on the left hand side almost in line with my shoulder, which I had never had before so then I started easing off the amount of gym/swimming I was doing, as I attributed it to overdoing workouts.

One day a few weeks later I had just gotten out of the bathtub and put my underwear on, leaned against the sink to brush my teeth and felt pain from my hip on the left side downwards. It really hurt to touch the cold enamel, and not long after that I had pins and needles constantly in my left foot including the sole of my foot and toes all the way up to my hip which then progressed to both sides over the next couple of weeks. At that point I finally decided to go to the doctor’s office, where I was prescribed tablets for inflammation and a muscle relaxant but I was never told what the problem could be. After taking the course of tablets the pain only worsened, the pins and needles so bad that anything touching the bottom half of me was the worst pain I had ever felt, and walking was a nightmare, from the waist down I was very sensitive to temperatures. I was numb and I felt as though my legs were like ice on the inside but to touch them they were a normal temperature, and the burning in my hands was really bad, and I began to get pins and needles in my head as well as my left shoulder blade.

I went back to the doctor and explained all this to him. I was given a blood test and was then told I was vitamin D deficient. I was instructed to buy a supplement which I did, but nothing changed and it only got worse. My hands were starting to lose feeling and became sensitive to temperatures, I couldn’t grip things properly and they started to spasm when I held a pen or something small. I went back again to the doctor’s, office and again I explained all of this to them. I was then referred to a neurologist.

When my appointment date came for the neurologist I was close to tears and frustrated that I had gotten that bad and no one was listening to me or wanting to help me. I was so tired and drained all the time, my entire body had pins and needles, spasms, burning, and by that point I had also begun to have extreme banding in my torso and extreme dizziness, muscle weakness/lead-like feeling in my legs, they were just so heavy and weak. I had no feeling in most of my body but anything hot or cold hurt me so badly it felt like my skin was being ripped apart. During my appointment the neuro did a few tests with his pen on me to test my sensation and tested my reflexes, then ordered a MRI.

Once I had the MRI and I went back for the results I was told I had a touch of swelling high up in my neck which is called myelitis. I was prescribed steroids and then sent home so I was left to find out on my own what TM is, how to manage with it and if there was a cure. Six months after my first doctor’s appointment I finally had a diagnosis but it didn’t make me feel any better. After the high dosage of oral steroids, the doctor prescribed another lot over a longer period of time as the first dosage hadn’t done anything, and the second lot didn’t work either.  I had to go back to the neuro and was prescribed over time a number of things to help manage the nerve pain, none of which helped me. They just increased the fatigue, dizziness or urination even more. I had a number of electrical tests in my brain and feet to check responses as well as 2 sets of MRI’s and an immunology blood test which all came back as satisfactory. Over time the pins and needles settled down but everything else was still very much there periodically though out the day.

During one of my many appointments I mentioned the dizziness and I was told by my neuro “It seems like every time you come here you have a problem” which made me feel like rubbish. I was also scheduled to have a lumbar puncture to test my spinal fluid to see what was causing the dizziness. All of this was a year ago now, so after 3 different appointments, one under x-ray and 10 attempts at the lumbar puncture, it caused me too much pain to have done so since then I have just been left alone.

I struggle everyday with one thing or another to do with TM and some new symptoms have appeared, such as loss of memory & concentration, not focusing properly especially on words. I tend to stumble over words or sentences or not understand what certain words mean or say, I have balance problems, on and off ear trouble, nerve pain, problems swallowing which causes me to choke so I don’t have much of an appetite and I don’t drink much. I don’t go out anymore on my own or with my friends because I struggle to focus properly on what’s going on around me which makes my dizziness worse.

I have learned to manage some of my symptoms during daily life by not doing too much in one day; otherwise I suffer really badly for the next 5 or 6 days with tiredness and lead like legs. I rest when my body tells me to, and I always make sure I always have a few sanitary pads just in case I can’t get to the toilet on time. It has been a little over 2 years since my diagnosis and I have learned a lot about the condition from things I have read on the internet and with help from the TM society on Facebook. I have come to terms with the fact that by now because of the time scale I will never make a full recovery from my attack, and I will always have these symptoms to a certain degree, but I am so grateful I wasn’t one of the unluckier sufferers that have been paralyzed with this illness. I have held down a full time job through the whole process and I have very supportive friends, family and partner who have been there for me from the beginning of my attack.

Neuroimmune disorders like transverse myelitis are rare; more than 50% of people with transverse myelitis are initially misdiagnosed. Join the TMA’s ASAP Challenge, a matching fundraising campaign made possible through the generosity of The Madison Charitable Foundation. The ASAP Challenge supports the training of clinician-scientists.  You can make a difference by improving quality of patient care and accelerating critical research.

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