Does this sounds like early ALS?

KimiE1994

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Good Morning Everyone,

Thank you for taking the time to read this. I’ve been freaking out about this for about 5 months now and I just need some reassurance. I’m a 26 year old mixed woman.

I’m unsure how ALS usually starts, but I noticed that in November of 2019 is when I started feeling muscle spasticity in all of my joint areas. It was painful doing a lot of things I guess. I couldn’t bend my knees for too long without it burning when I stood up. Typing was extremely painful if it went out for too long. I couldn’t lift my arms over my shoulders without it feeling tired and achy.
The pain in the joint areas went away in November of 2020. I received a rheumatoid tests as well as other blood tests and everything came back normal. I also received CT scans and X-rays and everything was clean.

Then, in November of 2020 I was getting weird overall headaches and vision issues. I also started experiencing fatigue. Just getting out of my bed and going to work was so hard for a while. Then I started getting upper back pain and tingles that would radiate throughout my upper back. I then started having shortness of breath along with consistent diarrhea. I can breathe fine when I breath all the way, but some days randomly I’ll feel like I need a big gasp of air. And I have no issues breathing in all the way, it’s just that my throat and chest feels fluttery and I feel like I need air. I received an MRI or the brain and neck and it came out clean.
Then the tingles went into my left arm and I started experiencing “weakness”along with pain in my left forearms and shoulders and some of my fingers. The reason I put quotations marks on “weakness” is because I still have strength in that area, and the weakness comes and goes. Some days it feels so tired and achy and “weak” and some days it feels normal. So that’s when I got an EMG of the left arm and right arm, and it came out clean. I received this EMG in early February of 2021. I also received a thyroid t4 test and muscle degeneration blood tests in March of 2021 and they’re also clean.

Now, that achy feeling has gone into my right arms (but it’s nowhere near the same as my left) and just like the left side, it comes and goes.
Then I started feeling twitching on random parts of my body. Some days they twitch all day, and some days they don’t really twitch. I also still have the consistent diarrhea, and I’m unsure if that is a symptom of ALS.

Then after that I noticed some changes in my left hand compared to my right hand. Some indentation in between the left thumb and index finger as well as something protruding from my left wrist. I remember reading that’s an area of muscle atrophy that happens in people who have early ALS, but then again I don’t know how it progresses. I’m unsure if the atrophy is quick or slow to show up in the muscles. I’ve also noticed changes in my legs as well. Some slight indentation in the right leg compared to my left.

I’m sorry for writing so much, and I know my EMGs came back clean, but I’m just unsure how the process works. Can some EMGs come back clean if this is in its early stages?
 

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lgelb

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I don't see any reason to worry about ALS. But given the constant diarrhea, you could have some kind of nutritional deficiency and/or GI problem that should be addressed, that might also relate to your muscle problems. So I would find a good internist and go from there, without any preconceptions.

Best,
Laurie
 

KimiE1994

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Thank you so much I really appreciate it.
And can you be honest with me, do you think there’s actually any muscle atrophy or just difference on the right and left side of my muscles? I know the mind plays tricks on people, especially when they’re stressed or anxious.

And yes, I’m definitely getting a colonoscopy.
But I really do appreciate you responding.
 

affected

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No reason to suspect atrophy or ALS. That's great news. No one is symmetrical, so differences from one side to the other are meaningless too.
I hope you can just work with your doctors on this.
 

KimiE1994

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Good Morning everyone,

I had a questions that I hope you guys can help me with.
I’ve noticed, starting on April 15th, my mouth/tongue/throat would get extremely dry. After it got dry, it made talking hard. It seems like it’s getting worse as well. It’s much harder for me to talk because if it. Talking in a higher octave is harder and I feel like I have to talk quietly to get my words out without issue.

I went to the doctor yesterday and she said that my mouth is producing saliva but we got some blood tests done anyways.

The biggest issue is with the tongue. It feels like it’s just not working and feels awkward in my mouth, however I am able to talk though, it’s just hard. I’ve also noticed in March my tongue would randomly tingle.

I’ve asked people if they have a hard time understanding me and they’ve told me no.

My tongue feels extremely dry, however I’ve noticed it’s easier for me to talk with something in my mouth, like gum or a mint. Something to lubricate the mouth.
I wanted to ask, for early bulbar als can it start this way?
Extremely dry mouth making your tongue feel awkward and hard to talk? Like your tongue feels twisted?

I’ve also had overall twitching and arms feeling like they’re not working properly, but I know that isnt a symptom of ALS.

Edit: Also eating and drinking is fine. I can do both no issue. For dryer food I feel like I need a sip of water though or else I might choke.
 

KimiE1994

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Thank you, and sorry about that.
 

Bestfriends14

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Not ALS, thankfully. As mentioned in the sticky, your all over symptoms point away from ALS. Please work with your docs to get to the root of what your issues may be.

Good luck to you.
 
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