Hi, ((((((Becky))))))
AWWW!! You must be going to a teaching hospital for your medical care and testing
I'm sorry you got whacked with this. I know almost exactly what that feels like. In 1990, I was told I MIGHT have multiple myeloma (terminal bone marrow cancer) or amyloidosis (also not a good thing).
The thing that both you and I got whacked with was 'possibilities' (not to mention idiot doctors).
If you don't have symptoms, you DON'T have ALS. What you may or may not have is some of the signposts.
I have a blood condition -- extra protein in my blood -- protein clones. I actually have a condition called monoclonal gammopathy of an unknown significance. How's that for a name
I have a 25%-35% chance of developing multiple myeloma if I live long enough. I've had this (that I know about) since 1990 ... so going on 18 years.
Signposts -- picture this: I can be driving down the street and see a sign that says "Boston" and some other towns. That means if I take the "correct" roads, I'll end up in Boston. If you've ever driven in Massachusetts, you'd know that the "correct" roads are almost impossible to find -- especially since The Big Dig started
That only means that there is a possibility 1-out-of-100, 1-out-of-1,000, 1-out-of-1,000,000 ... who knows. They never gave you odds. That means they DON'T KNOW.
I know how hard this is to adjust to. I was crying all the time. The topper was that there was a book excerpt in the Readers Digest right at the same time that I got this diagnosis. I was a walking mass of terror and panic and just plain sick-to-my stomach.
What I finally did was make an appointment at another hospital with a hematologist/oncologist. He sat with me for an hour and went over all the tests and told me -- you DO NOT have multiple myeloma. He explained about odds and about over-testing in teaching hospital settings and also about doctors who have no heart.
Becky, no one, ESPECIALLY a doctor, can predict the future. If I were you, I would go over to the
Alzheimer's Disease forum and read a little and talk a little. You'll find that you don't BELONG THERE yet.
Becky, I believe in interventions by The Universe. Sometimes because there is a lesson that we have not learned that we must learn. Sometimes, The Universe wants us to teach someone else what we know. In your case, I'm wondering if The Universe is guiding your steps to where YOU ARE NEEDED, to where you heart should be!!??
You've learned in an instant from a very cruel doctor what it feels like to get that diagnosis. What better person than you to help others who have been given that diagnosis (when the diagnosis is true).
If I were you, I'm make an appointment with an Alzheimer's specialist in your area to go over your test results. You have no idea how much this will help.
Then I would talk with my husband and arrange to get my 'affairs' in order. He should also. This is something that we don't think about, but, we should do, especially when we have kids.
Then sit down and talk with your minister or your priest or your rabbi, or, if you don't practice one of the formal religions, go somewhere nice and quiet, like a quiet room in the library, or a park bench next to a pond or a lake, or your back porch or your patio and just sit and think -- think about your life and your family and feel the connection that you have with The Universe in your heart. You'll get to the point where you'll feel acceptance and peace in your heart and your soul.
That's when you look into maybe doing some sort of volunteer work in the Alzheimer's community. Maybe brush a lady's hair. Or read to a man. Or stuff envelopes. Your heart will tell you where to go.
Becky, don't look at this as an END to your life. Look at it as a opportunity to set your feet in the right direction and to become a more integral part of The Universe.
It takes time to adjust to something like this. A LOT OF TIME. Even though you DO NOT HAVE Alzheimer's right now. Even though what he told you is NOT TRUE right now. There's always gonna be a tiny, little corner of your mind that says "what if". Listen to it. Hear it. But, don't make it the number one thing in your life. It's a signpost, nothing more. Doesn't mean that you'll EVER go down that road.
BIG HUGS.
Barb
