Welcome

[u/Notmeleg]

I have a few things I would like to say, but first if you twitch and have perceived weakness as your only symptoms, this sub is not for you. Please leave and go enjoy your life, you do not have ALS or any other fatal disease.

The purpose of this sub is not to fear monger but for the benefit of the people. Many will suggest that my goal is to incite fear, but I am merely observing the circumstances around me, my own symptoms, what is going on in the world and looking at the trends and science backed data.

A common misconception. ALS is a very rare disease. It is not. Here I would like to quote Bernard Zipprich. Bernard has devoted 15 years of his life to health care work, he has been diagnosed with slow progressing ALS. He said “it’s about as common as multiple sclerosis, but because most people with it die within two to five years of diagnosis, only about 30,000 Americans are living with the disease at any one time.”

“By 2040 ALS incidence is predicted to increase worldwide by 70%” https://www.uofmhealth.org/brain-neurological-conditions/als-facts-figures

There are countless articles and studies stating that Covid has been proven to cause neuro inflammation. There have even been studies proving it has triggered Alzheimer’s, ME/CFS, and heart conditions in people. I can provide links to any of these upon request. So I ask why is ALS the exception? Because it is scary? ALS is believed to begin long before the 8-12 months someone becomes symptomatic and seeks medical attention and ultimately receives a diagnosis.

Many people would like to be positively reassured only to come back seeking that reassurance once new symptoms pop up. Coincidentally, these symptoms align very closely with ALS and seem to be progressive. BFS is not a diagnosis that is supposed to involve anything other than twitching and some perceived discomfort.

Regardless, I am not telling you that you definitively have ALS and no one here should be doing so. This is not the place for that, that is a doctors job. The reason I created this sub is because I refuse to sit back, endure progressive symptoms that match ALS and do nothing about it until diagnosis. I plan to continue following up with my doctors to get to the bottom of this as should you all, but there is value in accepting something real is going on here.

For one, if it is ALS, you should advocate for yourself. Why? You may ask. There’s nothing they can do for you if you have it. Wrong. Taking place right now, there are more trials ongoing or soon to take place for the disease than in the history of the known illness. There are currently around 150 trials across the globe. Intervention sooner than later is known to have better clinical outcomes and increase quality of life and lifespan and you never know you just might receive something that seriously slows it down or even halts it altogether. Two, even if it isn’t ALS, if you are like me, you are experiencing progressive symptoms, muscle loss, and much more that severely impacts your quality of life already.

My proposal? Let’s do something about it together. Take action. I want this sub to be a place where people can go for ideas, therapies to try, etc. There are people out there just like us, who are experiencing what we are. I am hoping that instead of waiting by idly for doctors to figure this out as we get worse, together we can find ways to help each other. I have found a few supplements that I believe have made a difference in some of my symptoms personally. I have read accounts of others having large improvements from their own trial and errors. No one should have to suffer alone, people should be free to speak on what they believe is happening to them, people in this community could come together and make a serious difference in each others lives. Even if we all wake up tomorrow and are cured, why not advocate for those who suffer from progressive diseases? If your symptoms and fear aren’t enough to recognize how horrible these types of diseases are, what would be enough to get more advocates for rare diseases and to start making some real change? That’s all for now. I hope that I have gotten my point across without any misunderstandings. Sorry for the long post!

[u/ShortPrint8169]

It’s definitely a good idea to create a sub for people like us.

I’m more interested in figuring out: 1. What that could be 2. Other people opinions 3. Their doctors opinion, suggestion of diagnosis 4. Testing they have done 5. Supplements, treatments etc

But if this sub is going to be more about ALS. Slow progressing ALS, “we have ALS, but we just waiting for it to progress” and things like that I wouldn't be that interested to stay, no offence.

I'm pretty sure none of us (including you) have ALS ( I have been following your story and other people as well). We don't really match ALS (no failure, no clinical weakness, clean EMG (in terms motor neuron issues) - we don't meet the gold criteria for ALS, main symptoms and test results).

Its pretty clear that its something new and unknown yet. And we should stick together and share our experience rather than think about ALS all the time.

[u/Notmeleg → u/ShortPrint8169]

I can only speak for myself here. But my emg was not clean. I had insertion activity in one of my muscles that were tested. The emg only tested a couple places at the time as the neuromuscular specialist I saw squeezed me in last minute.

I am not diagnosing myself with ALS but it is certainly still on the table for me based on my symptoms, progression and such. The goal of the sub is not for everyone to post their symptoms and ask for ideas on diagnosis or even if it could be ALS or some other neuro muscular condition. There are other subs for that, mainly BFS and ALSorNOT.

I want this sub to be for people who have real neuromuscular issues such as myself, who do not have a diagnosis. Could be symptoms of ALS, long covid, muscular dystrophy, anything it doesn’t matter. But everyone can come here to discuss all possibilities, research, advocacy, supplementation, therapies. We are not here to diagnose anyone OR rule anything out.

We are here to advocate for people affected by horrible medical conditions similar to our own and help each other by sharing what has helped us individually and hopefully it can help others in the sub too. Stick together like you said, try to help each other and who knows, maybe we will heal and never be diagnosed with anything. But sitting back and waiting for things to get worse hasn’t helped me or many others. So let’s help each other is my suggestion. If it doesn’t sound like it’s for you I completely understand.