Rock bottom

[Solafide3 18]

I’ve had the twitching since December. 

At first I thought my weakness was just perceived. But every day it gets worse. I can’t lift things like I used to. Every thing I do I shake uncontrollably. When I wake up to go the bathroom my legs and arms are quivering and I feel as though I will collapse.

The doctor confirmed it’s not just anxiety. I had an emg maybe 20 days after twitches started. I don’t feel like it was long enough to catch anything. Doc wants to do a Repetitive Nerve Stimulation test. 

Ive read tons of stories where a person loses gradual strength like me. For example: http://www.alsa.org/about-als/2013-aam/stories/2013-aam-stories-427937571.html

Im about to lose my family over this. 

[Everyday Sunshine 108]

Its so scary, when you find out that its not nothing - but you dont know what the "something" is.  My advice, do the test and know that the goal is to find out what exactly is going on.  Dont assume that its to confirm als, its to just find out what is the story.  Twitching isnt just als all the time.

I have never had your specific symptoms, but when the news from a doctor isnt "its nothing" or "you're fine" I ask for a 1-5 freak out scale on their part.  Where 1 is "not a second thought" to 5 "total freak out".  Dont rate yourself, but ask what their perspective is for you and follow that.  If you cant wait until the test, ask the doctor now.  Make sure the doctor understands your fears and anxiety.  If the doctor is any good, they will give you as much information as possible to give you proper perspective.

Good luck. 

[Matty_G 18]

Hey buddy, 

I just wanted to throw this out there. When I was going through my ALS scare, I stupidly did a lot of research looking for answers, and I was never able to find a single credible source that confirms what you're describing. It always starts in a single limb and spreads from there and almost never with twitches until after the muscle is not longer usable. Your odds with what you're describing of having it would be probably more than 1 in a billion. Did your doc say specifically that's what you're being tested for?

[Solafide3 18]

1 hour ago, Matty_G said:

Hey buddy, 

I just wanted to throw this out there. When I was going through my ALS scare, I stupidly did a lot of research looking for answers, and I was never able to find a single credible source that confirms what you're describing. It always starts in a single limb and spreads from there and almost never with twitches until after the muscle is not longer usable. Your odds with what you're describing of having it would be probably more than 1 in a billion. Did your doc say specifically that's what you're being tested for?

She doesn't give me much information. She is insistent that I don't have ALS because I'm 30. Man I just stuck out my tongue in the mirror and it's scalloped. Scared it's tongue atrophy. 

[Matty_G 18]

3 minutes ago, Solafide3 said:

She doesn't give me much information. She is insistent that I don't have ALS because I'm 30. Man I just stuck out my tongue in the mirror and it's scalloped. Scared it's tongue atrophy. 

She's insistent that you don't have ALS because you don't have ALS. I promise you bro, I've done a shit tonne of research and what you're describing doesn't check the boxes. Right now, I want you to do 5 pushups and 5 squats. Don't worry if you shake, I want to know if you fail. The pushups will use chest, biceps, triceps and forearms/wrists for stabilizers and the squats will use quads and tibialis/ankle/feet for stabilizers. If you can do even 1 or 2. You're good. If you fall over on the ground or land on your face because you fail to even hold yourself up during the pushup for even a second, then maybe I would be concerned. Let me know your findings.

[Solafide3 18]

You are at least making me smile because you keep thinking I'm a male 😂 But to answer your question I can do 20 pushups, 15 squats, and 20 lunges back to back. I realize most people would be excited about this. What gets me is my arms get tired really easy. I can't even hold my phone up without feeling like I've been working out. And the shaking dude... the shaking. I look like I'm on crack

7 minutes ago, Matty_G said:

She's insistent that you don't have ALS because you don't have ALS. I promise you bro, I've done a shit tonne of research and what you're describing doesn't check the boxes. Right now, I want you to do 5 pushups and 5 squats. Don't worry if you shake, I want to know if you fail. The pushups will use chest, biceps, triceps and forearms/wrists for stabilizers and the squats will use quads and tibialis/ankle/feet for stabilizers. If you can do even 1 or 2. You're good. If you fall over on the ground or land on your face because you fail to even hold yourself up during the pushup for even a second, then maybe I would be concerned. Let me know your findings.

 

[Matty_G 18]

7 minutes ago, Solafide3 said:

You are at least making me smile because you keep thinking I'm a male 😂 But to answer your question I can do 20 pushups, 15 squats, and 20 lunges back to back. I realize most people would be excited about this. What gets me is my arms get tired really easy. I can't even hold my phone up without feeling like I've been working out. And the shaking dude... the shaking. I look like I'm on crack

 

Hahaha well, that's embarrassing. Sorry for the gender confusion. My face is actually red right now. On a side note, you're crushing the exercises! I'm really shakey too right now. I don't know if you read some of my previous posts, but since the beginning of November, I was having a lot of physical symptoms. Had MRI, blood work, basic Neuro tests, seen 5 different docs. None of them concerned, yet my arms/hands are shakey and my leg muscles are sore. Last night I was in a squating position for about 10-15 minutes fixing something. Legs shook for 10 minutes afterwards. I too can do a lot of push-ups, situps, lunges etc. I seriously think that being anxious for so long and thinking that I was on the brink of death, my adrenals, cortisol and nervous system are out of whack. We've had a lot of the same symptoms, so just thinking maybe it could be that? Do you shake when you're resting or only when moving or doing something?

[Solafide3 18]

2 minutes ago, Matty_G said:

Hahaha well, that's embarrassing. Sorry for the gender confusion. My face is actually red right now. On a side note, you're crushing the exercises! I'm really shakey too right now. I don't know if you read some of my previous posts, but since the beginning of November, I was having a lot of physical symptoms. Had MRI, blood work, basic Neuro tests, seen 5 different docs. None of them concerned, yet my arms/hands are shakey and my leg muscles are sore. Last night I was in a squating position for about 10-15 minutes fixing something. Legs shook for 10 minutes afterwards. I too can do a lot of push-ups, situps, lunges etc. I seriously think that being anxious for so long and thinking that I was on the brink of death, my adrenals, cortisol and nervous system are out of whack. We've had a lot of the same symptoms, so just thinking maybe it could be that? Do you shake when you're resting or only when moving or doing something?

I always assume anonymous people on the internet are dudes lol I usually don't shake at rest. If I bring my knee up and hold it at a certain position, I shake bad. I can also feel my legs shaking when I go down the stairs. When I stretch my arm and fingers out, my fingers are shaking. Sometimes I wonder about dehydration. If you ever got as worried as I am, Lord knows you didn't drink enough water

[Matty_G 18]

19 minutes ago, Solafide3 said:

I always assume anonymous people on the internet are dudes lol I usually don't shake at rest. If I bring my knee up and hold it at a certain position, I shake bad. I can also feel my legs shaking when I go down the stairs. When I stretch my arm and fingers out, my fingers are shaking. Sometimes I wonder about dehydration. If you ever got as worried as I am, Lord knows you didn't drink enough water

Ok so based on what you've said I think we both agree ALS is off the table. If you look up shaking, you will get a lot of stuff saying PD, but I learned that A) getting it in your early 30's is about 1:100,000, and B) PD is a resting shake (saw this in a video by one of the top neurologists) ours are movement based so that's out. Lymes causes more achy joints, speech issues and extreme fatigue (I know this because my friend had it) That pretty much narrows it down to our good friend anxiety. My legs get shakey too doing stairs, and my arm/hands will shake a bit when extending my forearm (like if I'm taking a sip of coffee at my desk, my hand will shake a bit). 

[Solafide3 18]

27 minutes ago, Matty_G said:

Ok so based on what you've said I think we both agree ALS is off the table. If you look up shaking, you will get a lot of stuff saying PD, but I learned that A) getting it in your early 30's is about 1:100,000, and B) PD is a resting shake (saw this in a video by one of the top neurologists) ours are movement based so that's out. Lymes causes more achy joints, speech issues and extreme fatigue (I know this because my friend had it) That pretty much narrows it down to our good friend anxiety. My legs get shakey too doing stairs, and my arm/hands will shake a bit when extending my forearm (like if I'm taking a sip of coffee at my desk, my hand will shake a bit). 

One reassuring thing is that I’ve never seen anybody talk about how the jerks we have are related to ALS. Do you have joint aches as well?? 

[Matty_G 18]

5 minutes ago, Solafide3 said:

One reassuring thing is that I’ve never seen anybody talk about how the jerks we have are related to ALS. Do you have joint aches as well?? 

Not so much joint aches as sore leg muscles (anterior tibialis to be specific) and my left leg has this bit of a sunburn feeling sometimes throughout the day. Usually worse in the morning and fades throughout the day. Mostly right now the things that are bugging me most are the twitches/jerks and shakiness.

Hey do you ever wake up with shakiness in your chest? Like your chest is vibrating? I've been getting that too. If you google it though there's like a thousand posts that this is anxiety related.

[Solafide3 18]

5 minutes ago, Matty_G said:

Not so much joint aches as sore leg muscles (anterior tibialis to be specific) and my left leg has this bit of a sunburn feeling sometimes throughout the day. Usually worse in the morning and fades throughout the day. Mostly right now the things that are bugging me most are the twitches/jerks and shakiness.

Hey do you ever wake up with shakiness in your chest? Like your chest is vibrating? I've been getting that too. If you google it though there's like a thousand posts that this is anxiety related.

I have definitely had that with anxiety. For some reason mornings are the worst for me. From the moment I open my eyes I’m primed to think the worst. Aren’t you the one that said your legs and arms feel weak and shaky when you get out of bed too?

[Matty_G 18]

52 minutes ago, Solafide3 said:

One reassuring thing is that I’ve never seen anybody talk about how the jerks we have are related to ALS. Do you have joint aches as well?? 

Yea mornings are worse for me, and it seems to be when I'm most anxious as well. Apparently, this is pretty common with a lot of people. When I get out of bed in the morning is when I feel weakest. The strange thing is that it does get better throughout the day. And even the shakiness is not ALL the time. This is what leads me to believe that it's nothing serious because serious stuff doesn't come and go.

[Solafide3 18]

5 minutes ago, Matty_G said:

Yea mornings are worse for me, and it seems to be when I'm most anxious as well. Apparently, this is pretty common with a lot of people. When I get out of bed in the morning is when I feel weakest. The strange thing is that it does get better throughout the day. And even the shakiness is not ALL the time. This is what leads me to believe that it's nothing serious because serious stuff doesn't come and go.

Same here, I don’t feel as weak later in the day. The only thing that remains is I feel unsteady. Not dizzy, just unsteady. If I close my eyes and stand there I can easily be knocked off balance. Can even feel myself sway. I don’t think that’s related to ALS but it still scares me. 

[Iugrad91 501]

Pretty much everyone will sway a little when their eyes are closed. I do a lot of yoga and I’m definitely more unsteady when my eyes are closed. It’s normal to sway a little. If you don’t fall over without being touched it’s probably nothing. 

[Matty_G 18]

8 minutes ago, Solafide3 said:

Same here, I don’t feel as weak later in the day. The only thing that remains is I feel unsteady. Not dizzy, just unsteady. If I close my eyes and stand there I can easily be knocked off balance. Can even feel myself sway. I don’t think that’s related to ALS but it still scares me. 

My god, we are so much alike it's scary. A couple months ago I was super off balance/unsteady all of the time (this is before I had the MRI and was convinced I had MS). I felt like I couldn't even walk right. This lasted a couple of months. I went to a conference with escalators and thought I was going to fall over most of the time. 3 days after MRI confirmed nothing wrong. Balance returned, no more swaying feeling. Then I'm like "Huh...looks like I'm just crazy" LOL

[Solafide3 18]

22 minutes ago, Matty_G said:

My god, we are so much alike it's scary. A couple months ago I was super off balance/unsteady all of the time (this is before I had the MRI and was convinced I had MS). I felt like I couldn't even walk right. This lasted a couple of months. I went to a conference with escalators and thought I was going to fall over most of the time. 3 days after MRI confirmed nothing wrong. Balance returned, no more swaying feeling. Then I'm like "Huh...looks like I'm just crazy" LOL

You had the same thing?!?! DUDE I am so glad I found you hahaha literally nobody knew what I was talking about. They were always like “everybody gets dizzy sometimes”. And I’m like NO I’m not dizzy! My body will not work with me! I still haven’t found any explanation for it. My neuro told me I have gluten sensitivity and have it in the form of gluten ataxia. The symptoms are actually very close to what we have if you read about it. But I live in Alabama and people would look at me like I have 5 eyes if I told them I can’t eat gluten so whatever

[Matty_G 18]

8 minutes ago, Solafide3 said:

You had the same thing?!?! DUDE I am so glad I found you hahaha literally nobody knew what I was talking about. They were always like “everybody gets dizzy sometimes”. And I’m like NO I’m not dizzy! My body will not work with me! I still haven’t found any explanation for it. My neuro told me I have gluten sensitivity and have it in the form of gluten ataxia. The symptoms are actually very close to what we have if you read about it. But I live in Alabama and people would look at me like I have 5 eyes if I told them I can’t eat gluten so whatever

That's so crazy! I thought I was the only one with the dizziness too! I was doing stupid balance tests every day like a weirdo cause something felt just "off". Good news is, is that it sure was anxiety causing it, because when I got good news, that symptom nuked it self pretty quick. Interesting that you mention the gluten thing because it's been brought up to me before. I've always had these little red bumps on the back of my arms (not very noticeable but they're there) and my doc said that's a good indicator of a gluten intolerance/allergy. I'm up in Ontario Canada and most of our restaurants do have Gluten free options. Fuck, now I'm thinking I should just eat salad for a few weeks as a test...God I hate Salad.

[Solafide3 18]

10 minutes ago, Matty_G said:

That's so crazy! I thought I was the only one with the dizziness too! I was doing stupid balance tests every day like a weirdo cause something felt just "off". Good news is, is that it sure was anxiety causing it, because when I got good news, that symptom nuked it self pretty quick. Interesting that you mention the gluten thing because it's been brought up to me before. I've always had these little red bumps on the back of my arms (not very noticeable but they're there) and my doc said that's a good indicator of a gluten intolerance/allergy. I'm up in Ontario Canada and most of our restaurants do have Gluten free options. Fuck, now I'm thinking I should just eat salad for a few weeks as a test...God I hate Salad.

Naw homie, I wasn’t dizzy at all. Your head makes you feel dizzy. Mine was more from like I felt like something was wrong with my legs to cause me to be off balance. Please tell me that’s what you meant cause I was really happy for a min LOL

[Matty_G 18]

51 minutes ago, Solafide3 said:

Naw homie, I wasn’t dizzy at all. Your head makes you feel dizzy. Mine was more from like I felt like something was wrong with my legs to cause me to be off balance. Please tell me that’s what you meant cause I was really happy for a min LOL

No the dizziness wasn't my head, I felt like it was my legs, Like I felt like my legs were confused with the rest of me. So even standing on them I had this "swaying" feeling like I couldn't carry my own weight or something. It was really strange.

[Solafide3 18]

2 minutes ago, Matty_G said:

No the dizziness wasn't my head, I felt like it was my legs, Like I felt like my legs were confused with the rest of me. So even standing on them I had this "swaying" feeling like I couldn't carry my own weight or something. It was really strange.

Precisely. Yay now I feel reassured... I’m going for a nerve test on the 19th if she finds anything I’ll definitely update you so maybe you can get an answer too

[Matty_G 18]

7 minutes ago, Solafide3 said:

Precisely. Yay now I feel reassured... I’m going for a nerve test on the 19th if she finds anything I’ll definitely update you so maybe you can get an answer too

Sounds good! be prepared that it might be stress/anxiety based though, because like I said, as soon as I got the clean test results, it disappeared almost instantaneously. Which if anything, is great news for you

[Matty_G 18]

25 minutes ago, Solafide3 said:

Precisely. Yay now I feel reassured... I’m going for a nerve test on the 19th if she finds anything I’ll definitely update you so maybe you can get an answer too

PS you might have come across this before, but after I was feeling better, I end up finding a bunch of anxiety sufferers who describe the same thing. I can't remember what the videos were called, but I remember this link getting posted a lot. Most of them referred to it as "Jelly Legs"

https://www.anxietycentre.com/anxiety-symptoms/weak-legs.shtml

[Solafide3 18]

3 hours ago, Matty_G said:

PS you might have come across this before, but after I was feeling better, I end up finding a bunch of anxiety sufferers who describe the same thing. I can't remember what the videos were called, but I remember this link getting posted a lot. Most of them referred to it as "Jelly Legs"

https://www.anxietycentre.com/anxiety-symptoms/weak-legs.shtml

But why did everything come on so suddenly? I’ve had major anxiety for 10 years and I have def been this stressed before. Never had this happen til now. Strange

[Matty_G 18]

3 hours ago, Solafide3 said:

But why did everything come on so suddenly? I’ve had major anxiety for 10 years and I have def been this stressed before. Never had this happen til now. Strange

I wish I had the answer to that. For me, right around October I was doing renovations on my house, had a complete falling out/dramatic situation with a family member and my work was doing a reorganization which was stressing me out pretty bad. Winters for the last few years have not been great already for mental health and As soon as everything lined up and was happening at once, all of these physical symptoms started happening. I was having dizziness, weakness, twitches non-stop everywhere, Hypnic Jerks, regular muscle jerks, shakiness, numbness in my hands, feet and face, sunburn feeling on my legs and forearms, insomnia, Dry mouth, chest palpitations, cold hands and feet, night sweats. You name it, I had it. Now all I have really is the sunburn feeling on my left leg, a bit of the jerks when resting or relaxing, my legs get a bit sore (not as bad as it was) and my hands/arms are a little shakey/feel uncoordinated. I was convinced there was something wrong with me, but I've had almost every test that can be done and seen so many doctors, including a very good psychiatrist that was pretty clear with me that my anxiety is manifesting as somatic symptom disorder. The proof of these things is that I am in fact getting better. Most of the symptoms I had 3 months ago are gone, but I had to really focus on convincing myself that I didn't have what I was convinced I had. I just kept cycling back to panic. I'm such a skeptical person normally, but this experience has really convinced me how powerful the mind really can be.