First Post

[CGAR]

Hi everyone,
This my first post.
I'm pretty excited to be here as I've learned so much from reading about everyone's experiences.

I just turned 40, and have been diagnosed with Bulbar ALS.
I'm married, have two kids, and love life.


Strange thing, I was diagnosed with ALS, by the ALS clinic in Hamilton, Canada.
After the diagnosis(about two weeks), I had a head MRI which the Dr. said won't show anything, but only a matter of routine.

During the follow up appointment he pulled up my MRI results, and I said, "let me guess, It came back fine!"

He was stunned and said, "no, not really"

It appears I have had a couple of strokes on the left side of my cerebellum.

Now, where once I had accepted the ALS diagnosis, now I am again taking a ride on the emotional rollercoster.

Obviously, we think all the symptoms are stroke related, but the Dr. says he won't take the ALS diagnosis back, only that the strokes could have been from a long time ago.

Doesn't seem right as I have always seemed healthy up until about June when my speech was affected and I started with weakness in my right arm/hand.

Anybody have any suggestions/comments/hope for us?

Cheers,
Casey

 

[Al]

The Docs at Mac are some of the best. I'd believe what they say. The EMG/NCV must have showed positive signs.

AL

 

[lisaohgee]

my mom had no symptoms either until she had weakness/numbness in her hand. I am sure that's not what you want to hear, but I also don't want to give you false hope.

I am so sorry you have to live with this. Your family as well.

 

[CGAR]

Al,
I've read many of your posts, and it's good to hear from someone around the area.
I live life pretty positive, and have a great support system with friends and family, so if life serves lemons, I'll find a way to make lemonade.

I look forward to talking with you.
Cheers,
Casey

 

[notgivnup]

Hi Casey,
So sorry about your D X. But you have come to the right place for help and support on this journey. The emotional rollercoaster is always a struggle, this is the place to ask questions or just vent if needed. I have found I can maintain my santity (although some might disagree with me...lol) with the help and support I get from all these loving people here. I Pray for the best for you and your family.

 

[10starr]

As a daughter of someone with bulbar ALS I would suggest several things:
Plan now some fun trip you would want to take with your family and do it now, don't wait. Enjoy it thoroughly!
Tape record your voice alot for your family. It will mean so much to them down the road as your voice changes. This is one thing I did not do for my mom and regret it.
Tell your loved ones exactly what you wish for in your health care now, before your health condition worsens, so they can respect your wishes. Make sure it is in writing!
Make sure all of your legal matters are in order and very clear, plan in advance so later the emotions won't get in the way.
Then, enjoy your life and look for all the blessings even with your diagnosis. Remember you are an individual, not a statistic.
Don't let ALS define who you are as a person.
Know that is it ok and human to feel many different emotions throughout your journey.
And lastly, accept help from others willingly and with gratititude.

I hope these might help you....

May you be strong and God bless......

 

[Alyoop]

Like Al said, your EMG must have shown LMN signs to get an als diagnosis. Strokes are UMN and will not show up as denervation etc.
It's lovely to hear from you and I love your bubbly attitude. Welcome
Aly

 

[Al]

Hi Casey. I'm in Orangeville and go to Sunnybrook.

AL.

 

[CGAR]

Thank you for all the kind and positive words.

The EMG I had is where I am still holding onto hope.

The EMG was not completed by my ALS Dr. but another.

While completing the EMG, he said some loss was showing in the right hand, and showing carpal tunnel.
he said he would be stretching to say there was any loss in the left arm/hand, and no loss showing anywhere else.

This was done before finding out about the strokes. Would the strokes not show a loss if that was the side that was affected?

Anyway, I don't think my ALS Dr. read the whole EMG report, because when I explained what the EMG Dr. was saying during the EMG, he then started to read the report.

I don't think I am holding onto false hope. I guess I'll know more after I have another EMG.

I don't think I have progressed at all since June, and other than some speech issues and some weakness in my right hand/arm I am able to complete all my usual activities/duties.

It seems like the mind is the biggest enemy.

 

[rose]

Hi Casey,

Welcome to the forum. Your upbeat attitude is so nice to come across!

 

[CGAR]

Thanks Rose!

Shame you're a Steelers fan.
Around here that's a bad word.

Any chance you'll become a Pat's fan?

Cheers!

 

[Sequoia]

Welcome Casey!I think 10starr has a good list of things for you and all of us. Especially record your voice, if you are still understandable. Have you heard of voice banking? It is a wonderful thing for your family to hear your own voice ask for simple things. If you are interested, go up to the blue bar above and open "search" and type in Voice Banking or speech devices" . Your attitude is great! Keep looking for the simple gifts of life...are you still able to walk? eat? rejoice in these taken for granted things....((hugs))

 

[rose]

Casey,

Chances? NONE, but, I do happen to be madly in love with a Pats fan, if that qualifies 8)

 

[CGAR]

Yes, more than qualifies!

 

[HelenL]

Yay, another Pats fan heard from...

I live about 40 minutes away from the stadium (yet sadly, never go!)