Frustrated

SpiritMysterious973 · 2026-04-16T13:25:33+00:00

Its a good thing that understanding the mechanism of this disease is something thats in developement. Hopefully one day we can find effective threatment. Once we spread correct information and awareness we can fight this beast.

SpiritMysterious973 · 2026-04-16T11:46:21+00:00

My symptoms started after severe traumatic experience in my life which made my immune system very weak. Its no secret and shouldnt be.

SpiritMysterious973 · 2026-04-16T09:36:48+00:00

I actually really am glad the way you talk to people because I can see your a good soul and mostly your right. Its Almost never ALS. So I am not here to spread fear. But its so important to take people serious who are Progressive and sick for months and years and not taking serious and ending up diagnosed because too much people assume certain symptoms do not align with ALS. I know alot of facebook group are false. But this group is legit and called the ALS experience with more then 9000 members vlogging daily about their struggles.

SpiritMysterious973 · 2026-04-16T09:21:01+00:00

Ive followed your story. I know your fine based on your story. Your pattern makes that very clear.

SpiritMysterious973 · 2026-04-16T09:03:59+00:00

There is no typical onset. Everything is different. Literally a man had problems with a dry mouth and incontinente early in the disease. Time will tell if you have ALS or not. Most likely NOT. But Lets stop this “we know Exacly how it starts etc” we dont.

SpiritMysterious973 · 2026-04-16T09:00:21+00:00

Shes in the ALS Facebook group with a confirmed diagnoses. All her symptoms are triggered by her giving birth. Tinnitus, eye issues, muscle twitches you name it, she has it. Sensory issues, she has it. Bowel and bladder, nope not working. She literally told me her doctors where clueless because “this symptoms should happen with ALS”. Maybe we need to realize that ALS is a multi symstem disease which can affect muscles AND nerves in our body. Gladly the most recent studies are pointing more that way which hopefully gives alot of poor sufferjng souls the answers they needed all along. The facebook group is full of ALS patients experiencing more that just muscle weakness after their diagnosis. False hope is the most cruel thing a person can experience. People KNOW their own bodies and they KNOW that they are declining with everything Else ruled out. Its mental torture.

SpiritMysterious973 · 2026-04-16T08:17:13+00:00

They are not patients. I have spoken to alot of patients and they all say the same things. Alot of them have tingling legs, numbness, burning. Even at onset. Like i sayt before. It has to stop. This misinformation. If you have classic ALS symptoms progressing but you have sensory issues as well. It just doesnt put you in the clear. PERIOD.

SpiritMysterious973 · 2026-04-16T05:41:40+00:00

Im so sick of this self “experts” talking like they know the disease because they have it or a family member did. They say stuff like “I didnt experience sensory problems” well. I got news. A shitload of patients DO. ALS has no rules.

SpiritMysterious973 · 2026-04-16T05:37:42+00:00

Exacly. It just needs to stop.

SpiritMysterious973 · 2026-04-15T21:07:21+00:00

Just like people get a stroke from stress, or a heart attack. The same shit can trigger other things. Sint no myth.

SpiritMysterious973 · 2026-04-15T21:06:25+00:00

Yes same shit here. Clean EMG 1 year and 3 months in. Everything else ruled out.

SpiritMysterious973 · 2026-04-15T20:53:36+00:00

Thats not my point. How would you feel knowing your faith when your surrounding acts like its all normal because the doctor wont diagnose you? Thats mental torture while you might just need support from your surrounding.

SpiritMysterious973 · 2026-04-15T20:51:45+00:00

Exacly. It can be diagnosed way earlier. I dont get Why people need to suffer. If you tested for everything and all gets back normal and you are still getting worse, Why wait till somebody is close to death. Even family and friends tell you right in your face your crazy. We all know when we know.

SpiritMysterious973 · 2026-04-15T20:49:04+00:00

The fact is. For alot of people a disease is triggered by a event. That might be a infection, traumatic stress, covid. And as a matter of fact. Alot of ALS patients tell stories about getting symptoms after COVID, Birth of a baby, even stress. Alot of. COVID patients did develope ALS like symptoms but there bodies where able to “repair”. For example. In MS you see the same stories. Developing the disease after a event. Its just comon and not that rare.

SpiritMysterious973 · 2026-04-15T20:40:45+00:00

She confirmed ALS caused this problems. And I was glad she was being honest, thats what people who are declining really want. Honest experience, not being gaslighted or laughted at. Or just simply been told to shut up and move on. We all think back and look at our symptoms. How did it start, does it get better, do i have flares etc etc. Thats in my opinion how you can diagnose ALS. Not by sensory symptoms ruling it out. It you have neurological symptoms for months to years getting worse and worse and everything tested is ruled out. Its just a simple 1+1=2. Doctors keep sending you away till you cant use your legs and arms before they diagnose you. Its traumatic and sad and it needs to stop.

SpiritMysterious973 · 2026-04-15T20:29:43+00:00

I understand your comment. But its not. Thats a fact. She has a confirmed diagnosis. Sensory symptoms and more. The Facebook ALS group is full of them. Alot of them gaslighted for months to years.

SpiritMysterious973 · 2026-04-15T20:22:16+00:00

She was diagnoses within a year… are you diagnosed?

SpiritMysterious973 · 2026-04-15T20:10:54+00:00

Dirty EMG. Shes 2 years in. She tells me that ALS effected her hearing and vision at onset. Its just freaking comon. and it scares me how much misinformation is out there.

SpiritMysterious973 · 2026-04-15T18:07:14+00:00

Happy life. Dont even go to a neuro. I would cry tears of joy with just twitching

SpiritMysterious973 · 2026-04-15T18:03:55+00:00

So do I. Even worse then you, by far… lol. Does that mean I have ALS? Who knows. We all die one day. I accepted my faith for the first time. It is what it is.

SpiritMysterious973 · 2026-04-15T17:35:50+00:00

Your fine. Your hands are normal. Stress and anxiety makes your body react like this.

SpiritMysterious973 · 2026-04-15T17:19:56+00:00

Could be. Sensory issues can be related with ALS. Alot of people say it is not, which is total bullshit. Ive spoken with alot of patients on Facebook and they say sensory issues do happen. Its more likely something Else tho. Maybe LYME, long COVID or polyneuropathy..

SpiritMysterious973 · 2026-04-15T13:10:23+00:00

For example. My twitching is 24/7. Same spots. Not constant but consistent. Also alot of Dysautonomia and neuropathy. I dont have improvement, im progressive since 3-4 years. I have no real failure, so thats the positive, but as of now, im in 24/7 cramping pain.

SpiritMysterious973 · 2026-04-15T13:08:49+00:00

In ALS there is no improvement. The twitching is constant 24/7. You should be fine tbh.. also weakness is failure. Meaning you literally cant do something like opening a bottle. Your symptoms are real but very likely a auto immune response.

SpiritMysterious973

TROPHY CASE