Symtoms years before getting ALS

[Alex123]

ALS has traditionally been considered a neuromuscular disease. But besides the fact that eventually it may have to be considered as a group encompassing many different diseases, it may also have to be considered a multi-system disease which affects more than just the voluntary muscles.
As a neuromuscular disease, ALS seems to appear "out of the blue" and the person affected most of the time considered him/herself as a healthy individual. But if we look at ALS as possibly affecting other parts of the body besides the voluntary muscles, we could think about the possibility that, if this was a process that started way before the first recognized ALS symptoms appeared, there might have been signs that something was not entirely normal.
In the case of other neurodegenerative diseases like Alzheimer's, I think researchers believe today that there are things that start to change 10 or 20 years before it becomes apparent that the person has the disease. Perhaps some day the same conclusion will be drawn with respect to ALS.
I am starting this thread as a place to share our thoughts and experiences with respect to this possibility. Some of the symptoms apparently not related to ALS may in fact not be related but just a coincidence. It is hard to know and nowadays only statistical studies could give us some hints. In the future when the biology of ALS disease is better known, there might be other ways to figure out if some process leading to the disease starts many years before.
I have many symptoms in mind but I am afraid that if I mention them this conversation might be too biased towards those symptoms. So I'll leave my comments for later.

 

[Nikki J]

This is part of what is being looked at in the preFALS study- a longitudinal study of people positive for one of the FALS genes. This study collects all kinds of data, health problems, environment, exercise patterns, dietary patterns etc. there are periodic site visit which include blood and urine, physical exam, strength testing, pulmonary testing, cognitive testing, mri, ncs eim and emg. You can argue certainly that FALS is inherently different but this collects real time information before onset.

I think I was fine before my first symptom which was weakness to answer your question. I think my relatives would have said the same except for one that had heart disease. There was someone at tdi a year or so back who tried to collect some data. I think he was looking for and found reports of gi issues before diagnosis but his sample was extremely small and taken from a possibly not representative group

 

[affected]

I'm not at all sure what you have in mind here.

All I can say about Chris, from his reports to me (we were only together 4.5 years so my knowledge of his past medical history is purely from him telling me) that he was ridiculously healthy prior to ALS.

He had adult chicken pox, which is a major illness.
He walked through a plate glass window which caused damage that sutures in an ER corrected.

Apart from that, he never had blood drawn for any illness, did not know his blood group, and had never been an inpatient in a hospital. He rarely contracted colds or flu. He was not an athlete but was a very active person physically and mentally.

His first symptoms of FTD preceded the ALS but were not recognised at the time - it was with hindsight that I saw the personality changes happening.

His first sign of muscle wastage preceded noticed or clinical weakness by around 2 years, but again not recognised by us as an issue at the time. It was just noted by a physio who was working on him for something not ALS related.

So it was working in his body for some years before we began to realise anything was wrong - his speech began to slur and he had trouble swallowing water.

Again not sure what you are looking for people to say, but that's a start from me

 

[twitchykitty]

I think that studies of this nature would be invaluable.
I've always wondered personally whether the immune system is involved in that when someone gets stressed or sick their immune system is comprised enough to allow ALS to rear its head when exposed to something, or whether a serious muscle injury sends a message to the brain that gets confused in that instead of starting the healing process it shuts the muscles down instead. I have read stories of people developing ALS post surgery and the amount of physically active ppl , whether through a lot of general exercise , playing sports or being in the army which is highly physical & stressful seem to be quite common in ALS. I Imagine muscles would quite regularly get damaged through injury that way .

My personal experience though My symptoms began just after my 28th birthday. For 8 years prior I had intermittent joint pain and muscles that were sore to touch in my limbs. I finally got it checked just 3 months shy of ALS onset and my ana was positive and my c3 or c4 count was 5 X normal and my RF was elevated, the report indicated a connective tissue disorder that mysteriously disappeared when the ALS symptoms began, funnily enough I had limb onset.

I also had 3 muscle tears prior to onset my left ankle twice ( mine started left side) and I tore a hole through 3 abdominal wall muscles a couple of years prior. That's just my two cents for what that's worth & just a few theories I have more

Bring on more studies I say !!!

 

[BillH]

A couple of my cousins who are fALS positive but not symptomatic are taking part in one of those ongoing realtime studies. Like Nikki mentioned, fALS may be different but it seems a good place to start, bot to look for precursor signs or situations and for trying to determine mechanism.

The PALS that I have known and talked with have all spent time trying to look back to see if they could figure out and identify the earliest signs and possible causes. None has reached a satisfactory answer and none was able to pinpoint anything. My Mom had knee replacement a year before her diagnosis but we all agreed that being past 70 and overweight was more probable cause than fALS. One of our friends thought for a time a broken and abscessed tooth might have been the cause but all his docs said no. I think everyone does it but I'm skeptical that any of us will stumble on it.

But I also say "bring on more studies! big ones, with lots of researchers and lots of PALS!" May the next gen live without the fear.

 

[bear1973]

My only 2 cents on this is that the cause might be very well environmental exposure, whether it be diet, toxins or something else that somehow effects one motor neuron then starts to spread because of glutamate toxicity. As for myself, I had a new house built in 2011. I have also, over the course of the last 15 years, been quite thin and muscular, often not eating until much later in the day, and drinking a ton of diet soda...that said, I have read reports claiming that aspartame is not good re: glutamate toxicity, although I read through wiki that studies have shown time and time again that the excess glutamate from aspartame is so small that it would not be enough to be considered "toxic"

anyways, it does make sense that not eating for most of the day then splurging later on in the day with food would have denied the neurons of needed energy for much of the day, stressing the mitochondria.

As for the new house built, I did a ton of painting, staining, and was living in a house full of new drywall, paint, carpet and almost certainly toxins in the air that never had a chance to clear.

So...could it be that years and years of a poor diet structure stressed the neurons, then exposure to more toxins lead to one motor neuron dying, then starting that action to spread....? I will never now, although if I had to guess, that might very well have been the case based on everything that I have read.

 

[Alex123]

I would like to clarify that my initial question was not in regards to possible causes of the disease but just other symptoms before the known disease symptoms started.
I was not waiting for a specific answer. I was just expecting symptoms that you may have noticed, which would probably be very different for each person. Of course, if some symptom is mentioned more often, then there is greater chance that it has something to do with ALS.
In my case, I have had some symptoms during most of my life that I can mention.
But the one that is most puzzling is that maybe three or four years before ALS, I had an episode of dysphonia. It was intermittent and it lasted for a few days. At the time I attributed it to acid reflux. But now I am not so sure. I have bulbar onset ALS, and the first ALS symptoms that I noticed were difficulty pronouncing consonants (problem with the tongue) and also a kind of raspy voice. Even after I was diagnosed with ALS, I was thinking that my voice problem (vowels) was due to acid reflux, even I understood that the difficulty with consonants was due to atrophy of my tongue caused by ALS. But later, specially after reading a lot about the disease and meeting other PALS at the ALS support groups, I had no doubt that my voice problems were caused by atrophy of the muscles that control my vocal cords.
But the question remains about that episode of dysphonia some years before.
The other symptoms that I have experienced before are not currently considered to have any connection with ALS. Besides acid reflux, I have had slow empting of the stomach, itchy skin without rash and skin scaling (like seborrhea) all over my body. About 20 years ago I also had arrhythmias for a few days without known cause. Also at some point (more than 10 years ago I am sure) I had arthritis in my fingers for a few months (at the time I thought it could be Lyme disease). In many occasions I had back ache. The x-rays suggested stiffness in the muscles that made the spine more straight.

 

[twitchykitty]

Oh dear, so I waffled on my theories in the first half of my post, I hope the second half was more what you were after

 

[ShiftKicker]

I'm not quite in the same category as you-currently it's possible PLS- but my experience was with profound fatigue for 2 years prior to motor control issues. I played a sport that demanded a lot of me, so felt it was just a result of getting older and expecting too much from my body. I powered through for over another year before admitting defeat. The fatigue combined with a sudden penchant for sprains and injury/ inability to recover or heal normally caused me to quit my sport. One of my original neurologists told me he thought it was actually just the beginning stages of whatever I had. The obvious neuromuscular issues came on suddenly after a bout of meningitis Nov 2014. I was assured by yet another neuromuscular specialist that in her experience some form of viral illness will, in her words, "throw you over the edge" into full blown motor neuron disease- and is not a cause in itself. I think she was sick of me trying to convince her my spasticity was due to a bad fever or encephalitis or something and that physio would sort it out.

It's an interesting question. Part of me wonders if I'm just searching for signs and finding symptoms after the fact. Maybe I was just getting too old to strap wheels on my feet and throw myself at other people at high speeds...but I sure miss it.

~F

 

[starente15]

My father had bulbar onset. He had symptoms AT LEAST six months prior to diagnosis that included head drop (went to a chiropractor because he thought it was muscular), raspy voice (ENT said he had thinning vocal chords due to age...huh??!), 50lbs of weight loss without trying (no doctor saw this as concerning). He had sleep apnea but hid the fact that he was sleeping upright for months because he and my mother slept in separate bedrooms. He had muscle twitching for more than six months months but hid it from everyone. He started falling asleep more than usual during the day. One day my mother couldn't find him and he was in the driveway in the car, asleep. The following week, he ate breakfast and went to his office. She thought something seemed off and went to check on him and he was sound asleep after just waking up. It took three attempts to rouse him and they went to the ER where he got diagnosed incorrectly with a heart attack and pneumonia. His CO2 levels were skyrocketing causing him to sleep and the CPAP was making it worse all along. Finally, a neurologist came by and suspected ALS and sent him to a better hospital. He was diagnosed two days later.

He was a vet and they consider ALS 100% service related whether it is or not. I believe they suspect stress or chemical exposure to be the cause.

 

[KimT]

I had odd symptoms years before my diagnosis. Muscle spasms in my neck, frozen shoulders, even diagnosed with fibromyalgia as far back as 1999. In 2012 I twisted my left ankle for no apparent reason. A year later I fell for no apparent reason. As far as cause, I was exposed to extreme second-hand cigarette smoke from the time I was born, lived on a highly pesticided golf course for over 20 years, worked in sick buildings. Had two hard hits to my head.

Interestingly I was reviewing my Mayo notes from 1999, when I was evaluated for migraine. They noted brisk reflexes.

 

[Statius@]

At least 5 or 6 years before the symptoms that led to my diagnosis I began to notice that my walking gait was off kilter--I felt like I couldn't maintain a straight line, though the effect was subtle. The primary symptoms leading to the diagnosis in 2015 were in my legs--weakness and poor balance. I also noticed around the same time some difficulty with sibilants--I would tend to make an s into an sh, but further problems with speech have so far been minimal.

 

[Buckhorn]

My husband's first symptom that I know of started maybe 5 years ago - tripping on occasion. He did not have foot drop, nor does he now. Then, about 1.5 years ago, I noticed he was showing what I thought of as accelerated aging. He seemed to be "shrinking", and needed to take breaks often. He had no heart or breathing issues, so I attribulted this to aging. He could still out-work most men 15 years younger than himself. Then 16 months ago, he injured his lumbar spine, & had pelvic assymetry, requiring that his pelvis be re-aligned. Two months of PT and three specialists later, (two orthos and one neuro-surgeon) all said they could not see anything on his MRI that would explain the amount of pain he was having. In March, 2015 he contracted a viral infection while we were in the Caribbean. This left him feeling very weak and his quadriceps (thigh muscles) started to ache the very next day after this infection. He continued to feel very fatigued, especially his back and his thighs. In July he contracted and was treated for Lyme's disease. (Oddly enough, his pain got much better (for a short while). He also began losing weight in May or June, approximately 20-25 lbs. over the next 6 months. The pain and fatigue continued, and he said his legs "felt like he ran a marathon" every day. In early September I noticed fasciculations in his right forearm and right calf. After this, he began to exhibit noticeable muscle atrophy. In December he was diagnosed with sproadic, limb-onset ALS.

I think that very possibly a "domino" affect happened with the viral infection he contacted in the Caribbean and then Lyme's disease just 4 months later. I suspect his neurological system was already compromised, or in the early stages of ALS. My husband never smoked, never took any illegal drugs, only drank alcohol in moderation, exercised very hard, got lots of outdoor exercise, ate lots of fruit, vegetables, grains and some meat and had never been admitted to the hospital. Doctors said he was in very good shape for his age. He did drink a LOT of diet soda each day, rarely drank water, and was exposed to Radon, household pesticides and fertilizers for many years.