Old 07-15-2014, 03:54 PM #1 (permalink)
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Default Onset

so many say onset such and such a time....this really is noticeable onset...onset could be months or years earlier...example, I noticed a problem when I could not turn key in lawnmower with left hand...I am right handed....went to dr, right hand squeeze strength 90 lbs, left hand squeeze strength 45 lbs so onset was a lot earlier than when I noticed a problem....have read that als can be dormant for a long time before raising its ugly head...maybe this is why some progress so much faster than others...longer dormant, faster progression...or maybe other way around, longer dormant slower progression....just guessing
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Old 07-15-2014, 04:15 PM #2 (permalink)
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Default Re: Onset

You might be on to something there. I know that I didn't have a clue that my fvc was down until my first clinic visit.
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Old 07-15-2014, 04:53 PM #3 (permalink)
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Default Re: Onset

Its funny you say that Dalvin. My husband had no idea either. He thought he had allergies or a lung infection but presented with a fvc of 44%. He said after his diagnosis he hasnt felt "well" for a long time but nothing specific. Just tired, not sleeping real well, aching , sort of stuff. I noticed the fasciculations in his arm when the unexplained muscle cramping started at night. 4years before his diagnosis. This was explained away by diabetes, electrolyte imbalance,dehydration,etc. I know when the muscle cramping/fasciculations started because the cramps were so bad he couldnt straighten his leg an dI would wake up to him in agony and need to help him.
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Old 07-15-2014, 05:24 PM #4 (permalink)
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Default Re: Onset

Interesting how we all are so different. Twitching started for me last July, and cramping followed in October along with weakness in left leg and foot drop. I didn't realize I had lost so much left hand strength as well until diagnosis in December. I call onset last July, but you are right, there were possibly subtle things I didn't notice earlier.

Progression seems on slow side I guess, since I can still get around (slowly) independently.
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Old 07-15-2014, 05:51 PM #5 (permalink)
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Default Re: Onset

This is all so true. My first sign was not typing well...little finger missing the keys and a constant stream of "r"'s in the middle of words. Left hand began to loose tissue and fasiculations and after all kinds of hand surgery for carpal tunnel and ulnar nerve, my left hand strength dropped to 8% of right and right leg dropped to 20% of left. I'm kinda lopsided now lol. Now it is my lower back, right side and diaphram...so if someone sees a pattern other than random bolts of lightning from Olympus give me a holler.
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Old 07-15-2014, 06:02 PM #6 (permalink)
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Default Re: Onset

My husband slurred his speech occasionally and I even asked a couple of times if he had been drinking. He hadnt and wasnt amused by the question. He has also had some memory issues. Is that common? They started recently when he before he began his Riluzole but have gotten worse.
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Old 07-15-2014, 06:43 PM #7 (permalink)
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Default Re: Onset

Gooseberry, I don't think the memory problem is related to ALS. I read in one of those med. journals laying around the docs office and asked him about it that memory issues are pretty common in the general population after the age of 50 and progressively get worse as we get older. Since most of us are past that age it's not surprising when we forget things. I too have experienced it, call someone by their name one minute and the next can't remember it.
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Old 07-15-2014, 07:48 PM #8 (permalink)
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Default Re: Onset

I had had severe cramps at night for at least 3 years and started with dehydration symptoms in late 2012. Didnt start getting twitching and loss of strength till past 3 months
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Old 07-15-2014, 09:34 PM #9 (permalink)
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Default Re: Onset

Now that you mention it, my pals would get cramps in his legs at night many years before diagnosis. He also had sleep apnea and was tired all the time. Gave him meds for RLS and off we went. So many things looking back.

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Old 07-15-2014, 10:55 PM #10 (permalink)
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Default Re: Onset

my husband says he noticed small things about 2 years before diagnosis. he actually thought that he had Parkinson's disease and was hiding his symptoms from me. I noticed symptoms about 8 months before diagnosis but wrote them off to age and stress--things like exhaustion, high emotions, weakness. the slurred speech and stiff gait were the first things I was really worried about--they started increasing about 3 months prior to diagnosis.
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Old 07-15-2014, 11:16 PM #11 (permalink)
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Default Re: Onset

My husband and sister noticed speech changes 3 years ago. I had trouble keeping up with my class in 2012 - 2013 year. I saw my atrophy in my right hand in March 2013.

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Old 07-16-2014, 01:25 AM #12 (permalink)
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Default Re: Onset

-----
Max - Wednesday, July 16, 2014 12:25:04 AM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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Old 07-16-2014, 04:17 AM #13 (permalink)
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Default Re: Onset

hind sight maybe years? he wanted every thing at the upper shelves in the frig. and all the electronics above the TV not below, 'course they didn't make entertainment centers with the dvd and sound system shelving above the TV's shelf, but boy did we ever hunt for one! He didn't want to have to bend to reach anything, I recall thinking how lazy can you get! ... and complaints of his toes feeling "funny"
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Old 07-16-2014, 05:34 AM #14 (permalink)
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Default Re: Onset

My husband had several years of muscle cramps at night--some so bad he shot out of bed from a sound sleep and spent quite a while working them out. Then came the fasciculations, first in his legs, then arms, then back and stomach. I wasn't too worried until I noticed a slight tremor in his fingers. He noticed the weakness last--now I'm glad we didn't know what those early symptoms meant.
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Old 07-16-2014, 06:16 AM #15 (permalink)
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Default Re: Onset

Pearshoot this is really interesting so long as the DIH don't get in here and scare themselves even more.

Chris and I discussed this a fair bit in the month of his diagnosis.

We moved onto our property in May 2010. He decided to create this huge maniac vege garden and started having some hand issues at night so I sent him to a physio. The physio fixed the hand issues, I don't think they were the ALS, BUT the physio noted that he had muscle wastage in his shoulders. I would massage his shoulders and he would say they never used to feel so much like cords. I would shrug, I hadn't know what his shoulders felt like before.

Once his arms began wasting, I felt sick as I would feel them begin to feel exactly like his shoulders had felt all those years before.

So I believe that yes, it can be slowly working on the body long before symptoms start that are noticeable to call 'onset'. What onset was Chris if his shoulders started wasting years before his bulbar symptoms? We decided it didn't matter - it just was and we got on with it.

I often commented that maybe many people really don't notice some of the little things, as they put it down to 'getting older'

But I'm interested in your last comment - longer dormant - faster progression? That was our experience. I'm kind of thinking that we will find like so many other things ALS that there will be a wide range rather than something we can say is always common.

glad you raised this tho, really interesting
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