My MS Diary: The Beginning

Community Member

I bet that each one of us can recall that moment when we were first diagnosed with Multiple Sclerosis.   For some of us this moment was preceded by months or sometimes years of testing. The details of the journey can become a bit hazy.   But the words, "You have MS" will always ring with bell like clarity.

I have been a blogger for many years now.   And during the time when I first began to have symptoms of MS, I was writing about my experiences on-line as they happened.   This October will mark my second anniversary of my official diagnosis of this disease.   A lot has happened since then.   I have been living with my MS now for two years.   MRI's are now old hat.   I have become more accustomed to having weird and sporadic symptoms which appear and disappear sometimes within the same day.   I have gotten to know my body a whole lot better.   And acceptance is finally seeping in that I may have my buddy, MS, for the rest of my life.

But at the beginning I didn't know what was happening.   I was frightened, angry, and just trying to make some sense over what I was experiencing.   I am going to share a blog entry I had made following the first time a doctor had said that I probably had MS.   I would need further tests and confirmation from a neurologist but when the word, Multiple Sclerosis, was first uttered to me I knew.   I knew I had it.   And I was right.

I am sharing this in hopes that it may help someone who is currently going through the diagnosis process that they are not alone.   The feelings of anger, grief, and disbelief are all very normal.   I hope that you too can share your story of diagnosis here.   This is but one way we can support each other  and that is  by sharing our stories with one another.

My MS Diary (** June 2007 )**

This will be the beginning of my on-line diary about my experience with this disease, Multiple Sclerosis. I have been noticing that some people have named their disease...some calling it "The Beast" or more pet like names like Fred. Since I just obtained knowledge of my friend here...I don't have a name yet. But I am open to suggestions.

This really is a story with a long history of strange events and synchronicities which I am only now coming to process in my conscious mind.

I can only say with 100% certainty that this was meant to be. This event has meaning in my life just like most of the happenings in my life. And you can believe this or not, no matter. But I believe and this is what will carry me through this journey.

Apologies already for sounding like some pop psychology book. Sometimes the cliches you hear about life become real. You live them and all of a sudden they aren't cliches anymore. You get it.

At any rate here I am and I wonder where to begin with this story.

I just got diagnosed on Wednesday May 30th at about 1:44 in the afternoon. Strangest thing about the time. I had been waking up at that exact time but in the morning for about a week. I would foggily see the flash of my digital clock with that time. I thought about how peculiar that was and then I awoke to find my youngest son had drawn the number four with big lights around it and had left it for me to see on the kitchen table. I knew something would happen at that time but I didn't know what. Now I know.

On Wednesday I was waiting for the call from my doctor. I knew it could be yet another day to wait but I was hopeful should he call early that it would be good news. I had one phone call before his. I raced to the phone and began hearing a voice that sounded so much like my doctor's but then the voice said..."This is Sprint and we have a cell phone for you." I slammed down the phone in disgust. Finally THE phone call came and I was waiting for him to say "Nothing could be found and you nothing to worry about." I was even ready for..."The MRI is inconclusive so let's do more tests."

But those scenarios I had so carefully planned did not happen.

It was a rather short conversation and I actually have it recorded. My answering machine had started to pick up and so it is all there. He talked of lesions, white matter, swelling and inflammation. The word demylenization (I need to check the spelling of this) came up. Lastly the diagnosis came when he said the word I had known but was dreading. Multiple Sclerosis. There were some pauses on both of our ends. I am sure doctors do not enjoy saying such things. And I sure know that we patients don't like hearing such things. At first I am not sure I did hear it really. I thanked him for telling me and he gave me the number for neurology as this would be my next stop along my journey.

After I hung up the phone my first response was fury. I was ranting to myself out loud. "He did NOT just say that" A stream of explicatives poured out of my mouth. I wanted to break things. I wanted to punch holes in walls...anything to make this stop.

But yet I knew. I knew all along. On the way to the MRI the previous day I asked my gut if I had this. My gut...who is never wrong said, "yes".

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