when did it all start for you?

[Filmmaker]

I wonder if some day, docs will find a way to diagnose ALS way before symptoms become obvious... As far as I a concerned, my real problems started three and a half years ago, but thinking about it, I can date back my first symptoms to more than ten years ago, when I started having what I though were stomach cramps, and started feeling tired quickly (I was only 21)... I also had off an on tingling and burning sensations and difficiulty breathing that were attributed to anxiety so docs prescribed antidpressants and that was it... So when i started complaining about spasticity and very painful cramps, they again thought I was depressed and that was it... it took serious weakness and atrophy to be considered diffrently... Anyway, i just wonder if you had a similar eperience and maybe ALS is a long chrnic disease, it doesn't kill within 5 years but maybe within 15 (10 being undiagnosed...)

 

[Ms. Pie]

Not I. I was diagnosed pretty quickly after my right hand showed atrophy. I didn't really give ALS a thought until around the time I was being diagnosed. Dom't freak out. If you'd had symptoms of ALS 10 years ago you be dead many years by now. Let the doctors diagnosis you.

 

[seaside]

Be careful dredging up your old medical history:

https://www.alsforums.com/forum/general-discussion-about-als-mnd/17560-how-do-you-cope-really.html

it makes your story less explainable.

 

[Filmmaker]

I'm not talking about final diagnosis, I have mine now, I'm just asking if ALS, like cancer is actually stth that has been evolving in our body for 8 to 12 years before we realize there's sth wrong, so I'm asking if anybody has experienced very small still unusual symptoms when they were still healthy.

 

[Ms. Pie]

Oh, sorry. What was your diagnosis?

 

[Ms. Pie]

Ah, I see from your prior posts that you've just assumed your diagnosis. Again, if you had symptoms 10 years ago you'd be dead by now without a vent. I had clinical weakness a couple years before I noticed atrophy in my hand. Everyone is different. Good luck to you!

 

[Filmmaker]

thanks! No I got my ALS diagnosis two onths ago, now my atrophy is quite clear in my hands and left foot. unfortunately , i can't walk without someone helping e since last week so it is progressing quickly now...My old previous symptoms were not ALS but I wonder if they were not just anouncing it even though it declared itself much later. That's why I'm asking if some of you felt the same... you know sometimes you think "oh, now those little unsignificant sx make sense..."

 

[Ms. Pie]

Your guess is as good as mine regarding weird unexplained things through one's life. Nobody knows for sure.

 

[Ms. Pie]

Oh, I see where you said you have an ALS diagnosis. Sorry about that.

 

[psych1rn]

My husband has ALS. He was diagnosed in Feb of 2011 but had symptoms for 3 years! He is currently in the hospital...again...with pneumonia. He has since developed an ileus. So now the bowel is not working! They are doing all they can together him going again. If not, then we have no choice except to go back home on hospice care. If it goes on long enough the bowel will become necrotic. That leads to peritonitis and sepsis. This is so difficult for him. It's like being buried alive.......

 

[sadiemae]

You can drive yourself crazy by going back in time trying to figure out When everything could have started. My husband does this a lot and it drives me crazy too. It is What it is.

 

[Poet Chistopher Robin]

It was in 2009 for me and it took them until June 2011 to say what it actually was, if I had not of pushed for a second opinion on a broken knuckle they would never have found out what it was, And even once they had discovered what it was it was placed on record and buried for another six weeks

It was not until I saw a urologist that he found it and mentioned it

 

[hjlindley]

I remember sitting at my new dining room table, 6 months after the divorce and about 18 months after my Mom died. For the life of me, I could not get the top off my yogurt container. Thne ziplock bags, then buttons. That was all in 2009. Moved me ulnar nerve (boy, was that in bad shape), hand kept getting weaker and weaker. Probable diagnosis end of 2009, definative fall of 2011. Distal weakness. All things considered, I am one of the lucky ones.

 

[notme]

thanks! No I got my ALS diagnosis two onths ago, now my atrophy is quite clear in my hands and left foot. unfortunately , i can't walk without someone helping e since last week so it is progressing quickly now...My old previous symptoms were not ALS but I wonder if they were not just anouncing it even though it declared itself much later. That's why I'm asking if some of you felt the same... you know sometimes you think "oh, now those little unsignificant sx make sense..."

Who exactly diagnosed you with ALS? I'm a bit confused, as much of your history just doesn't relate to ALS.

And it wouldn't move this quickly--not in a matter of apparently days. Are you sure you have the proper diagnosis?

Spasms in the stomach have absolutely nothing to do with ALS. ALS affects voluntary muscles--the stomach isn't a voluntary muscle. That's why it doesn't cause heart issues, for instance.

There are a lot of other things that can and should be ruled out--and I wouldn't accept an ALS diagnosis at your age without every one of them being ruled out first.

Even your facial spasms are unusual for ALS. I have trigeminal neuralgia--horrendous facial pain. Who diagnosed the spasms?

There is just too much in your posts that doesn't seem to make sense. You're trying to lump all things together that perhaps shouldn't be.

With only one leg affected, for instance, with braces and/or walkers you should be able to walk.

They might find someday that ALS is auto-immune--kind of like MS. MS can take years to diagnose, by the way. A clear brain MRI can't rule it out on its own -- not when there are other symptoms--and it's much more likely in your age bracket.

 

[jb63]

I walked around with foot drop for 6 months before stepping into my neuromus doc's office. Pretty sure that was MND.

Janet