blueskies3
New member
- Joined
- May 31, 2025
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hi - 31yo woman. I am relatively healthy, no major past medical or medications.
A month ago, I was at work and I noticed that my legs were getting really sore easily (even with minimal exertion). I was so fatigued and sleeping much more than usual. This lasted about 10 days, and my leg reflexes also felt pretty brisk, and my legs feel better now but maybe not as strong as they used to feel. I went to see a neurologist who did a full exam and didn't seem worried (did my reflexes also, wasn't concerned). He ordered a CK - which was negative (actually on the low end), inflammatory markers negative.
But around this same time, while at work, I noticed a sudden sensation of a muscle dropping off in my throat. I usually always have some sort of globus/lump sensation in my throat but that night, it's like the inside of my throat felt very smooth/flat? when swallowing. hard to explain. One side of my tongue also felt weaker. When I got home, I noticed the left tongue also slightly twitching - but it has stopped since then.
A week after all of this started, I had an incident where I was just at home at ALL of a sudden, my voice stopped working (I was completely hoarse) and I went to the ED, and then the ENT who said it's prob bc my throat muscles went into a spasm. My voice has recovered since then, although not 100% the crystal clear way it once was. And if I don't use my voice for a while, it's raspy at first.
But this is the real issue, ever since the throat stuff started, it takes longer to swallow -I feel it going slowly and I would have to drink water to help drier foods down sometimes. And even when I'm trying to breathe, I feel like there is muscle or something? hanging over my windpipe so it feels like air is catching on it - even though I can still breathe well. The other thing is that, in addition to the QUALITY and SENSATION of my swallow feeling different than it used to be, whenever I eat something, anything, or drink anything - I notice I am also burping up air like almost ALWAYS, right after. To note, I haven't aspirated or choked on anything.
In the background of all of this, I caught HSV1 pretty badly one year ago, in the neck area (from left side of my lips and some other sensory regions) and initially when I had herpes, the vagus nerve and other facial nerves were somewhat inflamed so I had a mild swallowing issue then as well - but I had since recovered... up until recently and all of this is happening.
I had a brain/neck MRI done this spring (for headaches), normal.
What else could this possibly be? :sad: I am extremely worried as you can imagine. Please help. I feel really sad
I tried to make an appt with a neuromuscular specialist but you need a referral apparently and my doctors do not feel worried about my symptoms.
Also, I wanted to mention, that the FAR back of my tongue feels like it is slightly internally twitching on its own. Hard to explain. Could it be that my throat muscles are getting weakened. Should I be getting a referral to a NM specialist soon?
A month ago, I was at work and I noticed that my legs were getting really sore easily (even with minimal exertion). I was so fatigued and sleeping much more than usual. This lasted about 10 days, and my leg reflexes also felt pretty brisk, and my legs feel better now but maybe not as strong as they used to feel. I went to see a neurologist who did a full exam and didn't seem worried (did my reflexes also, wasn't concerned). He ordered a CK - which was negative (actually on the low end), inflammatory markers negative.
But around this same time, while at work, I noticed a sudden sensation of a muscle dropping off in my throat. I usually always have some sort of globus/lump sensation in my throat but that night, it's like the inside of my throat felt very smooth/flat? when swallowing. hard to explain. One side of my tongue also felt weaker. When I got home, I noticed the left tongue also slightly twitching - but it has stopped since then.
A week after all of this started, I had an incident where I was just at home at ALL of a sudden, my voice stopped working (I was completely hoarse) and I went to the ED, and then the ENT who said it's prob bc my throat muscles went into a spasm. My voice has recovered since then, although not 100% the crystal clear way it once was. And if I don't use my voice for a while, it's raspy at first.
But this is the real issue, ever since the throat stuff started, it takes longer to swallow -I feel it going slowly and I would have to drink water to help drier foods down sometimes. And even when I'm trying to breathe, I feel like there is muscle or something? hanging over my windpipe so it feels like air is catching on it - even though I can still breathe well. The other thing is that, in addition to the QUALITY and SENSATION of my swallow feeling different than it used to be, whenever I eat something, anything, or drink anything - I notice I am also burping up air like almost ALWAYS, right after. To note, I haven't aspirated or choked on anything.
In the background of all of this, I caught HSV1 pretty badly one year ago, in the neck area (from left side of my lips and some other sensory regions) and initially when I had herpes, the vagus nerve and other facial nerves were somewhat inflamed so I had a mild swallowing issue then as well - but I had since recovered... up until recently and all of this is happening.
I had a brain/neck MRI done this spring (for headaches), normal.
What else could this possibly be? :sad: I am extremely worried as you can imagine. Please help. I feel really sad
I tried to make an appt with a neuromuscular specialist but you need a referral apparently and my doctors do not feel worried about my symptoms.
Also, I wanted to mention, that the FAR back of my tongue feels like it is slightly internally twitching on its own. Hard to explain. Could it be that my throat muscles are getting weakened. Should I be getting a referral to a NM specialist soon?
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