miller427
New member
- Joined
- Jun 20, 2025
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- VA
I’m a 34yo female and I am having a very very hard time. For the last 2ish months I’ve had bad twitching body wide (legs, thighs, face, neck- all over) lately, I am really worried bc I have tongue issues daily. This includes a persistent buzzing feeling and twitches that I can see at rest- they look like little pops. I also feel like I’m starting to stumble over my words which is happening more often.
I have not been able to see a neurologist yet but I was able to get an EMG (they only did it on my left arm and leg) and that was normal however they didn’t do anything on my face or tongue. I was able to get the EMG as my rheumatologist sent in a referral for one- I do have diagnosed Sjögren’s syndrome and potentially lupus however these have been stable for years and my rheumatologist doesn’t think it’s related. I have had tons and tons of blood work done as well as an mri (my rheumatologist is great but not a neuro). The mri and most blood work (vitamin deficiency etc) have been normal.
I am a mom of 2 toddlers and I am sitting panicked daily that I have ALS based on these symptoms- especially my tongue and speech lately. I can’t get in to a neurologist for months despite calling daily to see if there are openings.
I’m feeling really hopeless and discouraged today after some bad tongue twitching and weird feeling in my mouth and throat. My tongue is also very scalloped but it’s been that way for years. Any help/advice appreciated.
I have not been able to see a neurologist yet but I was able to get an EMG (they only did it on my left arm and leg) and that was normal however they didn’t do anything on my face or tongue. I was able to get the EMG as my rheumatologist sent in a referral for one- I do have diagnosed Sjögren’s syndrome and potentially lupus however these have been stable for years and my rheumatologist doesn’t think it’s related. I have had tons and tons of blood work done as well as an mri (my rheumatologist is great but not a neuro). The mri and most blood work (vitamin deficiency etc) have been normal.
I am a mom of 2 toddlers and I am sitting panicked daily that I have ALS based on these symptoms- especially my tongue and speech lately. I can’t get in to a neurologist for months despite calling daily to see if there are openings.
I’m feeling really hopeless and discouraged today after some bad tongue twitching and weird feeling in my mouth and throat. My tongue is also very scalloped but it’s been that way for years. Any help/advice appreciated.
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