Status
Not open for further replies.

Bribri

Active member
Joined
Mar 31, 2016
Messages
44
Reason
Other
Country
Us
State
Mississippi
City
Somewhere
I'm a 26 y/o make it all started around a January of 2015 with muscle twitching all over my body and then I started noticing my muscles burning like if I'm under car working holding my head and arms up they burn of exhaustion. I've also dealt with off and on dizziness and unsteadiness which I know isn't necessary als. I first went to neuro in March 2015 had a MRI of brain clean. June 2015 had eeg he said "it wasn't really abnormal but it wasn't normal either" whatever that meant. He then did some blood work which was all clean then sent me for a emg in October 2015 by a neuromuscular specialist in one limb which he said came back ok didn't really specify. He then referred me to the neuromuscular specialist that did the emg. He took some blood work which all came back clean. My main issues now are the nasal and slurred speech along with saline building while I'm talking making it harder to talk which I haven't got a chance to tell my neuromuscular doc yet I don't get to see him for another 3 months. I'm so scared this is bulbar onset. Here recently I've developed this squeezing spasm sensation in my rib cage that makes it hard to breathe. I've also seen two different pcps about all of this and I've had a lot ruled out. I want to post a picture of my tongue and possibly a video of my speech but not sure how.
 
Sorry I meant to put saliva not saline saliva builds up while I'm talking which makes it harder to talk.
 
Sorry last thing I didn't mention was that during the whole time I was seeing the regular neurologist he never noticed anything wrong with my clinical exams but when I saw the specialist right off the bat he tapped both my knees and said I had brisk reflexes there.
 
Do other people have trouble understanding what you say?
Can you look in the mirror, then move your tongue up, down, left, right?
I'm not concerned about the rest of it. People twitch. People have saliva. People have brisk reflexes.
And you probably already know that if a muscle burns, that's not ALS.
When a doctor says the test result is "OK. Not perfect, but nothing to worry about," believe them. Our bodies have weird stuff going on all the time, and they can see that on the tests. But they also know what stuff is worrisome and what isn't.
 
Do other people have trouble understanding what you say?
Can you look in the mirror, then move your tongue up, down, left, right?
I'm not concerned about the rest of it. People twitch. People have saliva. People have brisk reflexes.
And you probably already know that if a muscle burns, that's not ALS.
When a doctor says the test result is "OK. Not perfect, but nothing to worry about," believe them. Our bodies have weird stuff going on all the time, and they can see that on the tests. But they also know what stuff is worrisome and what isn't.

I've had people say huh what did you say? I have to repeat myself sometimes. Yea I can move my tongue all around although it does seem a little difficult it feels like my tongue gets fatigued doing it.
 
And today after using my left hand my thumb just started spasms get out I couldn't control it
 
As far as ALS is concerned, I don't see any reason to be concerned. In ALS, when a muscle is paralyzed, it doesn't get fatigued or feel weak or sore, burning, or weird. It just doesn't go, no matter how hard you try. Ever again. Since the muscle doesn't go anywhere, it certainly doesn't tired. It just lays there limp and useless.

Not too worried about the spasms, either. Some people report that, but it can apply to lots of conditions.

I think you've got the same odds of getting ALS as any other healthy person you would meet on the street.

So keep your doctors appointment. Tell her all the symptoms you've had, and let them do their magic. In the meantime, don't be worried about horrible and rare diseases.
 
Thanks mike for your responses my concern is if it is bulbar the limb emg wouldn't have picked it up from what I heard. I see you're a vet mike I'm a active marine by the way hoorah
 
I also have cramps in various muscles all the time
 
I'm responding here because the OP has messaged me and asked my opinion.

The way ALS works is that it destroys nerves called motor neurones. There are 2 areas of them - ones that go from the brain to the spinal cord, and then ones that go from the spinal cord to the muscles.

The nerves are destroyed, and so the muscle does not get the impulse telling it to move and it becomes paralysed.

So, when you get burning and pain and fatigue, you are experiencing an issue with the muscle. ALS is about the neurones, not the muscle. We know the motor neurone is being destroyed because the muscle won't respond. This is very different to finding our muscles feel fatigued and burn and ache.

By the time you really notice that a muscle is no longer working, at least 70% of the neurone is destroyed. ALS is actually a widespread disease. If you had bulbar onset, it would be picked up by an EMG in your limbs. In fact it would be picked up in areas of your body that you hadn't even realised had any problems yet.

All you can do now is work with your doctors. We know ALS really well, but we are not seeing you, observing and hearing you (and no we don't want photos and video).
Work with your doctor and keep your mind open to them finding something far less sinister, as the chances of this being ALS are incredibly tiny.

I hope that answer your questions well for you.
 
Is this tongue atrophy??? I'm scared to death that it is on the side
 

Attachments

  • image.jpg
    image.jpg
    53.3 KB · Views: 414
Also along with the pulling spasms in my rib cage and diaphragm it's getting harder to pull air in like my rib cage won't expand I'm really worried guys have y'all heard of this? I've read pals having similar things happen but it was the respiratory onset
 
My respiratory rate is like 8 per minute could that mean I have weakness in the respiratory muscles? Couldn't that in return cause the lightheadedness and Brain fog from retaining co2? I went to the hospital Saturday and they check d my lungs and heart and all blood worked checked out ok. They didn't do a arterial blood gas which I thought was procedure when someone has breathing problems. I don't know what to do :(
 
I don't see atrophy. The white spots on the side might be cells damaged by rubbing up against the teeth. That's the result of stress or anxiety.
 
Thanks mike what about my breathing could that be weakness of those muscles? Wouldn't that cause me to be lightheaded and have confusion from retaining co2? Have you seen any pals here complaining of those things
 
Status
Not open for further replies.
Back
Top