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You are absolutely correct Kathy. I am a bulbar pALS and continue to experience a very rapid progression of the disease. I have not experienced signs of depression because I accepted my fate from the beginning and know that feeling depressed will only make things worse, not better. It is what it is, no point whining about it. I prefer to focus my…[Read more]

There are ~120 genes with mutations related to ALS in ALSSoD database.
But 3 genes are very common: C9orf72, which is found in half of familial cases, SOD1 in one out of 5 familial cases and FUS gene mutations.

Each of those genes are pathogenic only if the bear mutations, for example SOD1 normally protects us from oxidative stress, but some…[Read more]

In my opinion, certain factors about ALS can influence someone’s thoughts and feelings.   For example, bulbar-onset ALS has a less favorable prognosis than limb-onset ALS so if a pALS has the bulbar-onset ALS, it could cause the person to be more depressed and upset if he or she is focusing on that too much.

Obviously it is not any one thing that causes it to develop over time.  The onset of major symptoms is like the tip of an iceberg where the rest of it has developed over years or decades.  First, I think there is a predisposition caused by a virus that does damage to the CNS. Then the disease progresses from there.  Think Polio, and Shingles wh…[Read more]

How many different genes are there that they can test for to determine if someone’s ALS is genetic or not?

Dagmar, thank you for the information.   I do recall reading that now.  What I was referencing was another article I had read about it that has similar information.

I’m like you, Mike. I’ve been active in sports and fitness-exercise my entire life. And I have sporadic ALS.

But, I don’t believe my activity level was the cause of my ALS. Rather, it gave me a body that was in tip-top shape and better prepared to handle the challenges of living with ALS. If I had any loss of muscle strength, at least I was at a…[Read more]

Kathy – – I think you might have read it here in the forums 🙂 we have a discussion going in the Research Forum: https://alsnewstoday.com/forums/forums/topic/frequent-intense-exercise-is-a-risk-factor-for-als-but-is-it/

Basically, it matters whether you have sporadic or genetic ALS. According to this study, we need to differentiate between the…[Read more]

I personally think a high level of exercise has something to do with it.  I have noticed that a lot of pALS have said they exercised a lot prior to being diagnosed with ALS.  Yesterday I read an interesting article about the relationship between exercise and ALS.  I don’t know how to put the article on here but it was called:  Strenuous Exe…[Read more]

… and then there are those pALS like me, who despite living in the dry, desert area – – nowhere near water, coal, or power lines still get ALS. Maybe it’s not always caused by environmental exposure.

Was twitching your first and only symptom? This is scaring me.

And how long until you were confirmed by neurologist after twitching started?

My twitching started 6 weeks ago,last Friday neuromuscular specialist said all my testing is normal but I think maybe I went to early

And researchers need to do more comprehensive studies with long term survivors. Why some do better than others. Part of it I know is attitude towards the disease and it’s effects on you.  Fighters stand a better chance.

We do atrophy from ALS and it is not only due to lack of movement as a result of ALS.  I can prove it to be true based on my own hands which I constantly have been using.

I had my first major symptoms of ALS in 2006. Since then I have had strong Spasticity but very few to no twitches. Sometimes I startle especially when drinking coffee or listening to music with a headset.   

Unfortunately doctors don’t know what causes ALS, although there are many theories about what might cause it.  That’s one of the things that is so difficult about having ALS.  We don’t even know why we have it!  They need to have more of an understanding about what causes it in order to try to find a cure for it.

I’m so sorry, Lisa.

Ya, I have muscle twitching 24 hours a day. It started 2 years ago. It was one of the symptoms I had never experienced that led me to a neurologist and my ALS diagnosis. Twitching is exacerbated by any physical movement and stress. They are not painful. I do not take any medication to treat it.