Thursday 26 February 2015

Multiple sclerosis? Sounds bad but lots of positives

Headline is I (m) have MS.
Here is the background and story so far, a long way to go but its something I feel I should share. Partly as a cathartic act, partly to increase public knowledge of a disease I knew little of til recently and am still learning about in the hope it may help others have a positive journey through the disease, be it as a sufferer or supporting one.
So, it all kind of started about 18 months ago when at work one day I felt a little odd, had a few visual problems, spotting in eyes etc but thought nothing much of it. I worked in a less than ideal environment, a locked box with no natural light or air, staring at 4 (no less) computer screens for about 8 hours without the recommended break every so often as walking to fresh air meant a body search and possible loss of shoes. Then on my pleasant cycle ride home it ratcheted up a notch, blind spots appeared in my left eye. In the fresh air and pleasant August sunshine this was a worry.  I was meeting C en route, and explaining the problems I was having she convinced me to attend the local eye infirmary for a check up.
They thought the symptoms were indicative of a detatched retina, possibly atrophy of the vitreus humour. Essentially old age setting in early ( very early I thought). Problem was that over the next few days the examinations they preformed didn't show any real evidence to back up the hypothesis.
When 3 days later the right eye followed suit they decided it wasn't anything so obvious and suggested I see my gp for a referral to an opthamologist and maybe neurologist.

The symptoms disappeared over about 6 weeks, and nothing was found with my eyes and only some minor inflammation in my brain that could not conclusively explain the syptoms. So I was left with no explanation and no sign anything had ever been wrong.

Fasr forward one year and I developed a facial twitch, quite minor, but with the optical history, my gp refered me back to the neurologist.   After another mri he suspected ms, more inflammation but no physical symptoms. So a referal to an ms specialist.  Christmas came and went, and in the new year I developed what I can inly describe as a bit of a lazy leg. I was having to concentrate to walk normally. My appointment  with the ms doc came, and she linked all the symptoms to give a diagnosis, that on the 11th February.  
The symptoms faded and I went back to normal, it hadnt really sunk in.
Then a more severe relapse occured, over a week I went from feeling fine to not being able to walk without severe difficulty and a stick.
I was given high dose steroids to reduce the inflammation and walking became easier.  Whilst in the hospital I was offered a disease modifying treatment called Lemtrada, which I will begin on the 16th March.  The positive I am hanging on to is that I have had little life affecting symptoms, and have been lucky enough to be placed on treatment in little over a month of diagnosis that shoulder rid me of symptoms.