1st anniversary since diagnosis, 4 years since onset, today 8/29/2014 :-)

Started noticing foot drop July 2011. Still waiting for definitive diagnosis. Still possible, on riluzole but just got my 2nd AFO. Happy? Anniversary, I guess?
Vincent

I'm so glad to have you as a friend Max. I look forward to your next anniversary and hopefully puppies!

It's a tricky one for Chris.

August 2010 he was having some problems with waking with burning sensations in his hands and I don't believe this was ALS. He had been a maniac digging up the huge vege garden and I suspected this was his problem and got him to go to a physio. Where ALS comes in is that the physio said then - you have muscle wastage in your shoulders. The physio fixed the problem with the burning sensation in his hands and it never returned. I would massage his shoulders and he would say they never used to feel like this! We were a new relationship, not quite a year, so I would shrug as I hadn't felt his shoulders before they had been like this. At that point zero clinical weakness or fasciculations. But later we have certainly wondered as once his arms started to atrophy I noticed the muscles felt exactly like his shoulders had back in 2010.

No real symptoms of anything wrong until August 2011 he had a bad flu, and after it was gone he kept doing this weird little throat cough, which I now know were tiny laryngospasms.

End of May 2012 was when he noticed he couldn't whistle anymore, had jaw clonus and then started slurring and having trouble drinking water. It was minimal however at this point, and took about 3 months til it was always obvious to everyone.

Diagnosis May 2013, we started seeing doctors at my insistence concerned with his speech getting worse in October 2012.

Flew free on his new wings April 2014.

I never can quite figure what to say about 'length of time', but I know that you don't have muscle 'wastage' without a cause.

My opinion - it was trying to take hold of him from sometime in 2010, but it succeeded in 2012.

Depends on how you calculate - he was gone 11 months after diagnosis, but 4 years after first hints at something wrong was noticed.

I'm forever glad we never suspected anything was wrong until until early 2013, because we lived life like the happiest newly wed maniacs you can imagine and I wouldn't be robbed of that time for anything!

MaxEidswick said:

1st anniversary since diagnosis, 4 years since onset, still kick in'... Well, kinda kick in'

Click to expand...

Max, I know it is not really a "happy" anniversary, but given the alternative it's certainly preferable!

Now shoot some moonshine through the PEG tube and be happy!

Max, I for one am so grateful you are celebrating 1 year. You have answered a lot of my questions and offer a lot of support to all of us who are newer to the forum.. Hope you have a tremendous Labor Day. Cook on the Green Egg for Sandy, enjoy a cold beverage with her and watch a gorgeous summer sunset. Cool weather is coming!

Max = no peg (but moonshine of some kind will go down I'm sure)

>Max = no peg (but moonshine of some kind will go down I'm sure)

Right ... Cheap Pinot Grigio for me ...

Well into day one of year two

Ditto on the Cheap Pinot Grigio, Max. I'll raise a glass tonight in your honor. Thanks for all your posts - and here's hoping lots & lots more.
My one year "anniversary" is in 2 weeks. My symptoms started more than a year before that & the weakness in my left arm & hand was attributed to 3 herniated disks in my neck (I've met 2 others at ALS Clinic with the same story). Heading to Houston this week for ALS Clinic on Friday.
Dianne

>Heading to Houston this week for ALS Clinic on Friday.Heading to Houston this week for ALS Clinic on Friday.

if you need a place to stay, you are welcome here. we are in the nw about 40 mins from Appel.

Annie's first symptom was foot drop which started 2 1/2 - 3 years before diagnosis. It was originally attributed to compression of the peroneal nerve. She was told not to cross her legs - something that she rarely did. Eventually it became obvious that something systemic was going on as other parts of her body became affected.

Very glad to hear your anniversary report, Max. Sincerely wishing you and all our other PALS many, many more.

-Phil

Thanks, Phil

I was diagnosed either 3 months or 5 months after onset, but only because I self referred straight to a neurologist. 3 months from first noticing a wonky gait from foot drop. 5 months after my normal walking pace slowing down significantly, which can hardly be called a symptom, it's so subtle. But I'll bet you money that if they had done an EMG back then, they would have seen degeneration of those nerves in my right leg.

Happy anniversary, Max! You are a ray of sunshine.

>Happy anniversary, Max! You are a ray of sunshine.

Happy Anniversary Max. Glad you're still kickin, sorta. You offer so much support on here.

My PALS was also self referred to a neurologist in January this year because of his weakness in his left hand. He thought it was just because he was getting old but when he couldn't shuffle a deck of cards we knew to get it checked out. In hindsight he recalled he had difficulty with fine control with his left hand while painting overhead the prior September. It's moving pretty fast, almost no use of with hand and experiencing foot drop.

Sherry

ALS sucks, but IIWII ("It Is What It Is!") ...