Absolutely positive in my mind its ALS

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JaysEmOh

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So this will be a bit long cuz i wanna be detailed as possible.

Im 42, at around 21 my life was changed due to an undiagnosed illness. Woke up one morning with strange weakness in my legs. Could no longer stand more than 30 mins at a time without severe aching in lower back and legs. Developed palpitations, along with other symptoms but im gonna try not to make this a novel. So basically went undiagnosed until about 4 years ago. Was given a fibromyalgia diagnosis, i think only cuz i brought it up. Suffered from terrible anxiety since my mid to late teens. I know this has nothing to do with wat im concerned with now, but thought id provide some backstory. Maybe related maybe not.

So here comes the ALS stuff. I noticed about a year ago weakness in my legs. This was different than i experienced 20+ years ago. These were shaky legs when trying to move them. I kind of wrote it off as me being on painkillers for 3 years (ive been around people on drugs that are really shaky) or maybe just my very small frame and low muscle tone, lack of exercise and just getting older. Went to the doc about 3 months ago, did some tests, everything checked out. Just as it's been for 20+ years.
Then the really scary symptoms, at least for me, came about 2 months ago. I was having sinus pressure in my nose with headaches. And i havent been sick in over a year. Still have it. Although this coukd be totally unrelated as a CT showed a couple small cysts and thickening in the sinuses. At the same time, about 2 months ago, i had like a bubbling sensation in my abdomen. And the one that was really odd and worrying was when i would chew my jaw got tired really fast. Now that i know what i know, it was actually my tongue. Got pretty worried about these 3 symptoms. Also would feel a popping feeling in the abdomen occasionally. As i look back now, im sure those were twitches.
I had a cousin die of als about 6 years ago, so i started looking up the symptoms. (May have been familial, i was told it was on his moms side. We're related through his dad.) The tongue one worried me but i hadnt had twitches, at least i thought. Well no longer than about 20 mins later i was standing up and my calves went twitch crazy. Hundreds if not thousands of twitches within minutes mostly in the lower leg below the knee. In the back, side and front. Then started noticing them in my back, arms, feet, chest and even my face and scalp.

I was a nervous wreck. So my ex knows my anxiety is bad, i texted her and said theres no doubt i have ALS. She invited me over to stay, we have a daughter together, to comfort me some. Thank God for her. Shes on the opposite end of the spectrum when it comes to that stuff, like most people, she always thinks the best.

My daughter had a softball tournament the next day, and i help coach. That night as i was trying to sleep (possibly nerves) i would wake up short of breath, having to take a deep breath. Well that next day, i started noticed weakness in my arms. I tried to pick up her bat bag and my arm was shaking pretty bad trying to lift it. So i did like a self strength test in both arms, and both were shaky. Then later that day i noticed that certain foods felt like they were stuck in my throat. Even after trying to wash it down with several drinks of water. I knew then theres nothing else it could be.

Ive been in such shock cuz to me its no different than a Dr saying i have ALS. I know that sounds crazy but ALS symptoms are so unique and precise that i really feel u can basically diagnose yourself if theyre bad enough or have many of them. I have a friend's dad die from it and he knew before he went to the doc.

Im scared to death and can barely even function. All i can think about is dying from suffocation, basically just holding my breath til i die, (always been a big fear of mine) and being buried inside my own body.

Just a few things i forgot to mention. Also about 2 months ago i noticed something weird with my thumb. Like limited mobility. I was playing video games and it felt sort of tight. Cant remember if it was just one or both.

The leg twitches seem to be very few if ive not been up using them. Just sitting or waking from sleep.

Ive also noticed some hoarseness over the past couple weeks or so.

Have some abdominal pain right under the ribs. Woke up one night and was painful on both sides of abdomen. Was hard to straighten my abdomen out.
And some lower back soreness as well when waking. Im assuming these are cramps.

Sorry this is so long. Just wanted to be detailed as possible. But as u can see ive diagnosed myself. Just too many things that line up that really cant point to anything else.

Oh the cramps. Cant believe i forget about them. Cramps in shoulders and everywhere in my back mostly. Mostly from turning, extending or stretching. If i try to do anything strenuous with my legs they cramp badly.

God bless you all.
 

affected

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You do need serious help, but not because you have ALS.
Please read this really long post because we wanted to be as detailed as possible, and it answers all of you long descriptions of non ALS symptoms. I humbly suggest you read it twice, and very slowly and carefully.

Twitching, cramps and shaking are nothing to do with ALS and are not weakness nor worrisome on their own.
Please seek help from a doctor, take that huge long post with you. Please don't pursue this here, it will not help you.

 

JaysEmOh

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Thank you for posting and i dont mean any disrespect when i did. But i honestly convinced myself.

Although this was slightly relieving, Some of it seems contradictory. Reading over the site ive read some als patients did have twitches all over the body when they started. I also remember my cousin that died from it just 6 years ago did get progressively weak. Isnt that why a neurologist could take years to diagnose it cuz they do the tests to measure progressive weakness? But the article u posted said it doesnt work like that. That they dont just gradually stop working they all of a sudden stop working.

I know my post sounds crazy and anxiety filled. But i have never been this bad in my life. I wasnt hoping for a diagnosis on here. I was hoping i could just hear from someone they may have or may have not experienced the same things as i have. But i was definitely having some symptoms before the anxiety hit me hard. Like the leg weakness and tongue weakness. Also the episode with my thumb that i still felt before i quit playing.

Im terribly sorry if i offended anyone. I really am, as this is a horrible disease. But im still convinced i do have it. I dont mean that as an insult to anyone. I seen what my cousin went through and i would never mean for that. I thought it would be ok being there was a thread for, could this be als?
 

Nikki J

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Yes weakness progresses as more muscles fail.
you mention many non ALS symptoms plus symptoms in multiple areas which is not how ALS starts. Most of the diagnostic delay for ALS is due to time to reach a neuromuscular physician. Occasionally people have symptoms and findings that are indicative but not diagnostic and it takes time to get an official diagnosis. These people are not told they are fine.

you need to see your primary care and work out a plan. Do not insist you have ALS as this will lead to a goal of disproving your idea instead of exploring your symptoms
 

lgelb

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Third that. We all know from reading media nowadays that you can read anything and turn it into whatever your mind wants or fears. You're describing a textbook case of health anxiety. There may be some real health issues behind it, but until you lay it out with a doc (not playing carousel docs) you'll never know and just keep spinning.

You asked whether people here experienced the same as you before being diagnosed with ALS. This answer is totally, thankfully, no. See your primary care doc and start feeling better. Off the top, there is probably work to do with pain management, sinus/allergies, sleep and such. The answers are with them, not us.

Best,
Laurie
 

affected

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Yes but people with brain tumours will say they had many headaches. A huge proportion of the population twitch, even all over, without there being any pathologic disease process. So to say, but people with ALS twitch, does not mean you might have ALS because you twitch as ALS is extremely rare.

If you want to take our sticky post and compare it against other things you read, that is you choice. However, we wrote that post to prevent our terminally ill, and carers of the terminally ill from having to post the same answers back and forth all day every day. So it is our position, not somewhere to start debating with you from.

For the record, I never once indicated that your post sounded crazy. I simply gave you the facts to help you calm down and get medical assistance to find what is actually going on, as obviously something is. I do wish you the very best, but we can't help.
 
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