Thursday, October 14, 2010

How long have you had MS?

October 14, 2010

Do you remember when you first found out you had MS? Do you know how long you have had it? It is unlikely you really know. Most doctors treat the symptoms long before they even think of MS. After all, if you have a problem with your eyes, for example, they treat your eyes. If the symptoms go away on their own, chances are you will both forget it. You may go through that process several times before anyone starts to wonder about the problem being bigger than the symptom. Here is how it played out for me.

Doctors had been talking about 'maybe it was MS' for a few years but no one actually made a diagnosis or at least never told me they had. I was unable to work at anything - the market was depressed and my age worked against me. I'm an accountant and a paralegal and without any feeling in my right hand, holding a pen for more than a couple of minutes, or typing is pretty impossible especially when there were time requirements. So I have been on O.D.S.P. since my savings ran out a few years ago.

But for the years between a cancer operation in 1990 and O.D.S.P. my savings and the odd job kept me going. And my sister in South Africa put a roof over my head for about three years. It was while I was at her place that I knew I had MS.

I loved to walk and I loved walking around Polokwane checking out the flowering trees and the beautiful birds and the odd wild animal. Christmas is a real fun time for a Canadian to be in South Africa. It is hot with temperatures going up into the mid thirties Celsius and it is very dry. I would go to the mall and have the grandest chuckle at the cotton wool snow and those poor native's dressed as Santa complete with padding to make them seem fat and jolly. Everyone would sing "Jingle Bells" and I always wondered if they had any idea what a 'one horsed open sleigh' was. There certainly were none anywhere to be found in South Africa or anywhere else on that Continent, for that matter.

I was headed home from one of these jaunts when my left foot broke the rhythm by flying off to my left and at a weird angle, nearly sending me flying. Initially I told myself I must have stepped on something but it did it again with my next step and the one after that and the one after that. I knew I had seen that gait before. A gal I used to know who had MS started out like that. Hers got much worse quickly and she eventually could not control her limbs or her speech at all. My little episode went away after a couple of days but I knew. A few months later I was back in Canada.

I mentioned my fears to the doctors here and they just fluffed it off and gave me anti-depressants. They also got really ticked off at me for ‘self diagnosing’. I do not understand their anger. I have lived in this body for 65 years and am very tuned in to it’s little foibles; they looked at a few isolated portions of it for less than 20 minutes and claimed to know more about it than I did. And they did that for the next 6 years.

During those 6 years I went from walking to walking with a cane and then to depending on a walker. I also went from being able to do short term jobs to not being able to anything in an office. If you never thought about it before, just think of how many of the usual office procedures depend on your hands and fingers being in working order.

My right hand had been pretty well useless at doing things above waist level since that breast cancer operation in 1990. Well I thought it was useless but it got more useless. Back then I couldn't move my arm above my waist but I could feel things. Now I was experiencing moments, sometimes days of being unable to feel anything. Glasses and mugs slipped out of my hand to the floor if my concentration wandered; buttons were impossible to do up. My writing went from pretty good to unreadable. My doctor's response - give me yet a stronger anti-depressant. So I moved from small town Ontario to small city Ontario. And I got a new doctor. My Dr. Yau is a gem, a diamond that would make Cecil Rhodes' discoveries fade in comparison. Sadly for me, she isn’t an MS specialist. She’s my G.P.

The first noticeable difference - she listened to me. Then she didn't fill me up with "head" pills. Then she sent me to a fabulous little place here in Ottawa - The Elizabeth Bruyere Day Hospital. There they taught me some excellent exercises to keep from atrophying totally. They showed me some household devices that would help make some things easier - a great little gadget to make getting out of the bath easier; a scooter to make trips to the grocery store and back possible etc. And sometime during the three months I was going there, my bladder up and quit. So they taught me how to catheterize myself.

I'm not sure but I think it was the bladder thing that really got the ball rolling. My next trip was out to see the MS people at the Civic Hospital. The doctor I saw there fired questions at me. Questions about fainting, tripping, numbness and etc etc etc. Lots of the areas he touched on were familiar – sort of. I grew up on a farm before Medicare, We did not go to doctors unless we were super sick. I didn't change after Medicare. I seldom got sick and I went to doctors even less often.  But I had had little problems with most of the areas he mentioned. Few had been bad enough and none lasted long enough to send me to a doctor. Well except two.

Question: "Have you ever suffered temporary blindness?"

Answer: No but I did have a strange thing happen back in 1988. I suddenly had black spots in the middle of whatever I looked at and that turned to double vision. I had at least a half a dozen tests. They were done at The Calgary Children's Hospital, but they could not find the cause and no one even suggested MS. It lasted about three months and then just up and disappeared. It has never happened since so I just wrote it off as some sort of quirk." And

Question: Ever had any strange incidents that we haven’t mentioned yet?

Answer: Yes. Once my back just gave out on me without warning and for no apparent reason. I could not hold myself erect no matter how hard I tried. I went to a doctor who gave me lots of tests but never had an answer. He recommended physiotherapy. It didn’t make any difference so I took it upon myself and strapped my back. I.e. I taped it tightly so that I could walk upright. About a week later I was fine again.

Those two questions plus all the others plus the MRI results plus the failing bladder and finally I have a diagnosis. Multiple Sclerosis!

Then last year, CTV’s W-5 showed me The Liberation Treatment. A possible Cure? Treatment? Hope? And that possible cure/treatment/hope is called  Angioplasty for CCSVI (Chronic cerebro-spinal venous insufficiency). But it isn't available here. I can fly all over the place and get it done if I pay for it myself. But I cannot get it done in Canada, one of the most modern, rich, progressive countries in the world - well unless you are talking medical procedures - that is a trip back to The Dark Ages!

Yup folks! Only in Canada! Here I am, finally with a diagnosis and running into more medically inspired smoke and mirror jobs than ever before. Like 'let's collect more money for research.' There is no profit in cures, only research. Like we need placebo trials for CCSVI. See Placebo Effect on the page entitled 'What Are MS Dragons' for a brief monologue about it. Please feel free to turn it into a dialogue by adding your 2 cents in the comment area.
So, have you figured out how long you have really had MS?? Officially I have had it for a year. Unofficially - Who Knows?

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