JaysEmOh
New member
- Joined
- Oct 19, 2021
- Messages
- 2
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- VA
- City
- Richlands
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.
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.