Hello all.

I am also new, I am young 28 year old female. I have absolutely no symptoms. None. I am perfectly healthy, however, I went in to discuss a recent MRI I had gotten for some Migraines I have been experiencing. My neurologist did a thorough exam and said I was perfectly normal. However, on MRI I had findings consistent with those of ALS, not MS, not stroke, not tumor, nothing. THe only thing he could think it to be was ALS, but after examining me, he said that I have absolutely no neurologic signs.

My question is, what the heck does that mean? Am I going to get it? Do I have it and the signs havent showed up yet? Is it something else? I am so upset adn confused right now. He wants to "observe" this. But in the meantime I am thinking of how to plan for my two little babies for the day I will be gone, or think about my husband having to care for me. I mean, I know Im freaking out, but how do you handle news that it may or may not be somethign like this?

Hi Becky and Welcome to NeuroTalk. I see that you have located our ALS forum. What a scarey dx to plant in your mind with no symptoms.
Sometimes I wonder about doctors.

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

Thank you for that. I appreciate insight. and yes, I feel like the what ifs adn the "lets wait and see" are weighing me down. I am a wreck! The silly thing is I feel absolutely fine. So thank you. I will continue to monitor my life and my possible chance of this disease. Again thank you. And small question, what does this ahve to do with Alzheimers?

__________________________________________________ _______________

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.

Sorry, ((((((Becky)))))),

I meant to refer you to the ALS forum

I've got fibromyalgia (fibrofog) and I'm getting up there in years too (just plain fog) -- sometimes my words and letters flip -->> ALS -->> ALZ I've given up on trying to fix that too

Hugs.

Barb

Becky,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene

Hey, Becky.

Another opinion would be a very good idea. Have your MRI checked carefully for any structural irregularities, including Chiari Malformation. Chiari (or "Arnold Chiari," as it is sometimes known) is a congenital defect of the cerebellar tonsils in the lower back of the brain. Chiari can range wildly from no symptoms at all to severe, debilitating migraine-like pain, neck stiffness, vision problems, gait and balance issues, and many others. A slight herniation can result in these symptoms, and an inexperienced physician can easily dismiss its significance. If your doctor ever said the word "Chiari" to you, get your films checked out by a neurosurgeon who is knowledgeable about Chiari. You can get a referral from the following sites:

www.WACMA.com
www.ASAP.org
www.chiarione.org
www.conquerchiari.org

Good luck!

LIZARD

Thanks for the Chiari info, but that was ruled out at the beginning. I do want a second opinion, but I feel impressed to jut wait it out a few months and see if any sympotms arise. I feel great! I have nothing that is even close to what most experience in the beginnings of this disease.

I guess for peace of mind, I should seek a second. But again, I fear all they will say is "lets just give it time". Anyone know where I could find a good ALS doc in Utah?

LOL! No problem, everything you said made sense until you started talking about Alzhiemer's. I got a little confused there, but now that I know you meant ALS, it all makes complete sense. Thanks again.

Becky have you gone to the ALS forum recently and read Lisa's post?