It started with a little tingle on my tongue

In October. I couldn't see anything in the mirror and thought it might be a pimple. The tingling grew over a few weeks and covered half my tongue. By the time I spoke to my family doctor in November there was also a little numbness on my lips, right side, same side as the numbness/tingling on my tongue. He said it sounded neurological and sent me for a CAT scan, which came back showing something so he sent me for an MRI. None of this happened quickly, it took months. Finally in March I was sitting in a neurologists office and handed her the disc of my MRI. She opened it on her computer and she looked at it for a while then turned to me and said, MRIs are wonderful, they show you what is happening in your brain...but unfortunately they don't come with labels. It looks like MS, but it could be a few other things that I would like to test for just to rule them out. This could even be from drugs you are taking but there is an awful LOT of this so I doubt that. There appeared to be MS lesions in my brain. She set up blood tests, an evoked response test and another MRI of my spine.

I am still waiting for the second MRI but had to call her last week to let her know I didn't think I could wait to see her at end of June...symptoms were worsening. I feel like I am walking on a boat in rough water most of the time, my vision is giving me trouble and my brain feels like it is in a thick fog.

Sitting in her office this time, she told me the blood tests had ruled out Lupus and another thing. It appears to be MS. Since the symptoms began to worsen, I remembered feeling like this once before, 27 years ago when my son was beginning grade one. Brain fog and staggering gait...I thought the rose dust I had been using did it to me and went with the bottle to my doctor. He sent me up to the hospital and they kept me in.

I was crying because I was missing Craig's first day of grade one...they picked up on that and thought it was the problem...hysterical mom loosing her son. I insisted I wasn't like that but they sent in counselors. So frustrating.

One night, still in a corner of a room in emergency, I heard a woman in a bed telling a doctor her symptoms and they were like mine. They had already diagnosed her with MS. I can't remember how long I was in hospital, it was under two weeks and they took CAT scan, other tests, found nothing. On the day they sent me home they took a spinal tap and did not tell me to lie down for the rest of the day resulting in an agonizing headache that lasted days. They sent me home instead, telling me to eat more, gain weight and relax. Two weeks later I was back for a check up and they told me it wasn't MS. Gain weight, relax.

Over many weeks the symptoms lessened and over the years I forgot about them, mostly. The episode did bring about a spiritual rebirth, I became a Christian, which is another story that I won't tell here.

I thought of all this again over the past few weeks as my symptoms have been worsening and mentioned it to my neurologist this week. She said it was likely my first MS flare up, she took the details and will contact the hospital in Montreal. Even after 27 years, the records will be available.

She told me how they halt a flare-up now, large dose steroids, which I began today. They did the first iv in the hospital this morning and then I went to work. The remaining treatments will be done by a homecare nurse for the next 5 mornings before I go to work... next week I will take prednisone in large doses that gradually diminish. This will stop the flare-up and lessen the damage remaining.

She wants to talk about long term MS drugs when I go back in a few weeks. I want to talk about recent developments in MS research. An Italian doctor, researching MS because his wife had it, discovered angioplasty opens blocked veins that trap iron deposits in the brain which cause the MS lesions. With everyone they perform this procedure on, their symptoms disappear. I want to be part of a clinical study.

The Baxter box arrived tonight, packed with IV pump, and medicine. Homecare nurse will arrive between 7:00 and 9:00 AM then I will go to work and keep my wrist covered. I have seen them terminate many people because they were sick--didn't want to be saddled with the insurance costs or long term disability. Nothing personal, it's just business.

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