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azhiker

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What does Symptom onset really mean? I am sure many PALS can think back further to incidents or changes in their life where the dismissed it as getting older.

My first symptom that made me go see a doc, was my person trainer noticed I had an abnormal gait when running (Jan 2016).

Or was it when I tripped and fell on the sidewalk crack, while running in Dec 2015 in Phoenix, AZ

Or was it during a business trip to Florida in October, 2015, I noticed a slapping sound with my right foot on the wooden raised platform I was running on. If I hadn't gone on that trip, it would have taken much longer for me to notice something was wrong.

Or was it back in April 2015, when I was training for the summer run season, that my times were off and I was running much slower than the fall of 2014 ( I nearly ran my PR in Sept 2014). I explained it away as an effect of the breast cancer treatment in the summer of 2014 (radiation and Tamoxifen )

What If I wasn't a runner? I probable wouldn't have seen any symptoms until March 2016, when I had trouble walking thru the airport without limping.

I am trying to put together my own personal timeline to calculate my progression.

If anyone has an official definition, please reply.
 

Nikki J

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I don't know what the official definition is. I would call it the first thing you noticed / remembered that in retropect was clearly MND BUT and a very big but when talking to the doctors it is better to have a later onset date because for most clinical trials there is a time limit of how long you are eligible after symptom onset and that is 2 or 3 years. The later they call your onset the better your chances of getting in a decent trial. And once it gets in your record you are probably stuck with it. My clinical notes have included symptom onset date so no chance of rewriting history. So I would " forget to mention" all that 2015 history
 

GregK

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Massive cramps in my rear thigh muscles.
Followed by foot drop.
 

WendyWooG

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Being asked why I was limping, and thinking really? Am I oh......
I really hadn't noticed.
 

affected

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My Chris was classed as bulbar onset.

However, more than 2 years before bulbar symptoms started he went to a PT for something not ALS related and the PT commented that he had a lot of muscle wastage in the back of his shoulders. He had no weakness at the time, but I would massage his shoulders and they felt very strange.

When his arms started wasting after diagnosis I realised that they now felt exactly like his shoulders felt ... that was eerie!
 

vw-fl

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The first symptom my husband noticed was when he was trying to scrape barnacles off the hull of our boat outside in cold weather. When his hand was warm he could grip the scraper but when his hand got cold he could no longer grip it. Turns out that the muscle at the base of his thumb and forefinger had atrophied. In retrospect we had noticed that his voice had become more nasal but didn't think anything of it.
 

robynp

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i had the same onset...i am not a runner but after 4 falls tripping over curbs and escalator..it was foot drop and later i started limping and then i had finger bending and cramping all on left side. Then the ALS dx.

Robyn p
 

[email protected]

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Welcome to the forum from another PALS living in eastern Iowa. I noticed changes in my gait, and balance difficulties several years before those symptoms became bad enough to get me to a neurologist. The issues with gait went back 4-5 years before diagnosis, but could well have been unrelated.

Ed
 

KimT

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Falling during a brisk walk/jog for no apparent reason. Following summer twitches and cramps in left foot.
 

faithandlove

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March 2014 - Getting ready for a vacation to Punta Cana. I was trying on sandals and flip flops and I could not walk normal with these shoes.

August 2014 Three parties at our house and I was limping and fell twice.

August 2015 Nearly fell into our pond (which is very rocky and could have killed me), and then I did fall onto the grass.

February 2014 Terrible cramps stretching my legs in the morning, and stiff legs when I got up.

September 2014 Breaking 4 glasses within 2 weeks time.

Summer of 2014 Difficult time getting in and out of our pool. Needed help.

Did not get diagnosed until June 2016?????
 

lgelb

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Hi, Robyn, welcome and feel free to start a new thread in the newly diagnosed section so we can learn more about you.

Best,
Laurie
 

Lkaibel

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I think this is a question to which even the PALS and CALS don't know the answer always. Example:

Spring 2015: Brian developed Trigger finger. Trigger finger is pretty common and the great majority of people who get it simply have an overuse injury. Our Neuro said though that it seems many people experience it within two years of an ALS diagnosis.

Fall 2015: Brian was doing some heavy remodeling work for a friend and developed severe nighttime leg cramps. Again, this is pretty common actually with extreme exertion. However, Brian had no history of leg cramps and these were happening nightly.

February 2016: Brian trips and falls on the way up a flight of stairs at night carrying a lot of stuff. To further complicate matters, he gets an injury to his calf that is known to cause foot drop that will lead finally to his diagnosis on June 30th. In retrospect, THIS is identified in his chart finally as the onset. I think you could say his true onset was the fall of 2015, and maybe even sooner.

I would actually add that back in the Spring of 2014, Brian started saying he "felt weak" or "had chills and just don't feel right", particularly in the morning. Very subtly, he seemed to tire more easily and need more sleep. Age, stress, who knows? Clinically, none of those symptoms point to ALS but the process starts somewhere and is probably much more systemic from the start than we know. I better zip it, I am giving ammo to the health anxiety crowd!
 

Hank

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I consider my onset when I first noticed something was changing. Weakness in my thumb and finger.
 

JennyC

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I would say its the first thing that you noticed...I'll bet for most PALS once they were diagnosed they could think back further to other incidents they had that might have been ALS related rather than the first symptom that caused them to go to the doctor.

For my mom the symptom that caused her to go to the doctor was a persistent weakness in her left hand, she thought she had hurt a nerve when she banged her elbow. Looking back now we know her first symptom was a month or two earlier when she fell over uneven side walk, the same sidewalk that she walked every day. She was so bruised on her face that she didn't even go into work for a couple of days.
 

KimT

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Jenny, I think you're right. In 2012 I stood up from my chair and twisted my left ankle for no reason. I was very thin and athletic at the time and was walking/jogging 5 miles a day. I had never sprained anything before but I thought it was taking an unusual amount of time to heal. I limped for several months before I could even walk 1/2 mile again. I eventually got to a point where I could walk fast and far but that ankle stayed "stiff". My muscles were strong and this made no sense. Fast forward and my left foot and calf were the first muscles to atrophy and weaken.
 
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