I work in elderly care and in an effort to better understand the clients I work with, I have been researching their conditions. I was looking at the symptoms and treatments for Parkinsons, and reading about disease onset and diagnosis. While doing so I kept getting links to ms. I began to look at ms, for although I do not work with clients with ms at the moment it sees likely that I will at some time in the future. Now I am partly regreting that particular detour…
I am 45 and always considered myself fit and healthy despite two particular afflictions. In 1979 aged 11, I failed routine school eye test. I was refered to an optitian, then a doctor and then to addenbrooks hostital opthalmology department. I attended a clinic weekly and had electrodes glued to my scalp, at the end of the session they used nail polish remover and a metal comb to loosen the glue. I was forever pulling glue out of my hair. The end result was that there was nothing they could do about the loss of vision in my left eye. They suggested that I was born with it and said nothing could be done. No one questioned this further, and it was an acceptable excuse for my general clumsiness and balance issues. Including the tendency to lean into people when I was walking along side them. At about the same age I experienced the first instance of temporary paralysis. I was on the netball pitch and put my arms up to catch the ball, which subsequently hit me in the face as my body had frozen and the pain was great I could not talk and felt like I could not breathe. I had to be walked off the pitch still with arms outstretched, unable to say what was wrong. The embarassment was great, I avoided netball from then on - hockey proved my forte anyway.
Following on I experienced the same issues with my back probably about once every couple of years. By the time I reached adulthood I had become used to it. I knew the pain would pass and tried to block it out. I never told anyone about it through embarassment. Episodes became more frequent in my mid twenties but were still short lived. And my lack of vision in my left eye was not considered a problem …because according to the experts I must have been born with " what you have never had you will never miss". My mum and I did wonder why the issue had not been detected before during school eye tests, and they implied that I must have been cheating (albeit with good intention) on the tests and remembering the chart. My left eye looks normal, and moves correctly but remains useless interms of working vision (I see shapes, dark, blurred, muted colour and nothing in the periphery). We were told that the optic nerve does not trainsmit information from the left eye, so my right eye does the job of both.
In the last 10 years what I decided were back issues continued to become more frequent, more painful and last much longer - turning from hours to days and then to a week or more. Beginning suddenly often with a sharp pain in my ribs that made me catch my breath or with a stabbing burning pain under my right shoulder.that caused cramping and twitching and spread around my back and chest. I would breathe as shallowly as possible to limit pain. laughing was out of the question. Oddly I think this method of pain management was of great help during labour.
Pain relief …who needs it! until the final stages of labour I had it covered, and by the final stage it was too late anyway. with every painful contraction I simply retreated into my now well visited sanctuary in my mind. It appeared so odd to the midwife during the delivery of my second child that she slapped me round the face as she though i was unconscious. But my first labour was not without its problems, it was long and very tiring and the consultant concluded I lacked the natural urge to push. Not a problem on my second as I asked the midwife to tell me when I had to push and how.
In that last four years I have had more minor issues. None of which I considered serious enough to warrant medical attention. numbness and weakness in my left arm, occasional twitching and jerking, bouts of poor hand eye co ordination. dizziness, loss of feeling in thumb on right hand, numbness of face on left side. All these things can last between minutes to weeks. I did not feel my thumb for months. But I put them down as normal signs of aging,stress, trapped nerve, carple tunnel, dental pain and tiredness. I waited to see if they would ease before visiting the doctor and they all did. getting an appointment for non emergency issues takes weeks and I did not wish to appear a hyperchondriac. My back pain comes about every 5 - 7 weeks on average. My GP gave me tramadol to take if the pain gets too bad. She has said my back pain is inflamation in nerves causing the muscles to go into spasm. She refered me to a physio for stretching exercises too.
When I began to read about ms the “ms hug” sounded all too familiar. reading about other peoples symtoms I began to make worrying connections. All of the following issues I experience at least once a year
urinary frequency -occ asional inability to urinate
grinding teeth, jaw tremor, jaw locking
seeing bright lights in peripheral vision (oddly in both eyes)
sudden and shattering tiredness
occasional problems writing or with fine motor skills
stiffness or numbness in ankles, knee and hip
forgetting what i am saying mid sentence ar being unable to find the right word.
Getting stuck on a word and repeating it a few times. (this is usually when i am tired but is frustrating - I feel very out of control)
headaches base of skull and top of spine.
eye pain either dull ache or sharp stabbing pain.
Having joined the dots I must admit there is a possibility that I have relapsing remitting ms. I have made an appointment with my GP to discuss (non emergency 12 days from now), but I am in two minds as to whether to cancel it. Is there any benefit to having a diagnosis when symptoms are manageable. I am fit and active, give blood, generally I eat well and take vitamin supplements ( inc vit d3 because of early menopause). I am sure many of you will have also asked this question yourselves, does diagnosis change any thing for the better or does it make certain things worse - work, relationships etc?