My MS

It's hard to pin-point when MS first entered my life. It was around the Spring of 1999 and I'd not long left University and started work. I suddenly found that any extreme exercise or heat had a detrimental effect on the vision in one eye, to the extent that I could barely see from the affected eye.

I took myself off to my GP who admitted to being no eye-specialist and dispatched me to the local hospital which happened to have an eye casualty unit. Diagnosis: optic neuritis, one of those things.

And then it happened again, twice. By this point I was insistent to all medical professionals that three times was not 'one of those things'. During one trip to the GP he did wonder if it could be MS but this was when the standard test was a rather unpleasant lumbar puncture and the conversation went no further.

I continued to worry away the medical profession. During my time at college I'd blacked out whilst driving a car (turned out to be an intolerance to anti-depressants) and I'd had a lot of tests then including an EEG and and ECG. My records were pretty clear on what the problems weren't... at one point I had a chest x-ray to rule out Sarcoidosis.

So I was actually feeling pretty good apart from the repeated eye problems... and for a while I decided to write it up to one of those things.

Fast forward to 2001, more symptoms began to join in. Pins and needles in my hands and fingers for no reason; unbearable itching over random (and disparate) parts of the body and numbness when I walked starting in my feet and working up to my knees.

Finally in 2002 (4 years after the problems started) and more backwards and forwards trips round GPs and hospitals - and eventually a Neurologist; an MRI was ordered, but the result slightly inconclusive (not truly enough active lesions visible). I probably had MS, and was referred to my MS Nurse.

This is the point where I entered a stage of denial. The attacks were infrequent, and more inconvenient than disabling. I didn't believe I had MS (I even threw away all the hospital correspondence at that period).

During the next five years although occasional problems would arise there was nothing too serious that stopped my life from progressing.

This changed in 2006 when I started having trouble walking. At first it was just the occasional stumble or weakness. I'd use a stick for a few weeks here and there and then get on with things.

Then in 2007 MS finally beat me. A horrendous bout of vertigo and muscle weakness sent me to bed for the best part of six weeks... I couldn't walk. Steroids and physiotherapy got be back on my feet again - but I could no longer walk independently. The same thing happened again in the late Spring of 2008 and another four weeks were consigned to bed.

There have been other relapses that haven't been quite as dramatic... twice I've lost the use (almost entirely) of my right hand (yes, of course I'm right handed!)... I've had another half dozen bouts of Optic Neuritis (in both eyes).. I did once lose the hearing in my right ear for six weeks; and probably most amusing for the rest of the world I lost all feeling on the tip of my tongue for several days and could barely speak.

At some point the balance and the walking stopped getting better, and I took to 'bi-lateral' support (crutches) which do help me get around quicker. I also agreed to get a wheelchair for 'emergencies' (thank goodness).

Now I've accepted that I share my life with the illness, and most probably, like the frog in the well it will be to steps up and one step down... I'm not getting out of the well.

2 comments:

  1. Man! I was diagnosed in 2000 and I am currently going through what you described happening to you in 2006. The Vertigo is worsening and the leg weakness has appeared.

    I sense the disease in progressing, and I am now motivated to do something about it. I am doing research I will share on a new blog I'll start soon.

    Hopefully we can be blog buddies and help one another. Thanks for being courageous and sharing your story. I will do the same soon.

    Kerwin

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  2. I look forward to reading your blog! Do drop back and share the address - I've found with MS it always helps to talk!

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