Madeline
New member
- Joined
- Jul 29, 2022
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
I've avoided making a thread here for a while but things keep happening that exacerbate my worries. I've read the sticky.
First of all I appreciate all of the time any of you take to respond to this thread. You are all doing God's work dealing with so many heavily anxious people for nothing in return.
Being up front, I'm only 18. I'm well aware of the chances, but I just want to hear someone's input on whether I should try to push for an EMG.
I've had widespread twitches for about 3 or 4 months, most commonly historically in my calves, thighs, arms, back, and chest. However recently this twitching has spread to my tongue (at rest) and other parts of my face, especially the right side of my lower lip. This specific area has been twitching pretty constantly for the past 3 days, which is a slower twitch that almost feels like something is pulling on the muscle.
When I smile, it's slightly uneven with the side that twitches a lot not smiling as much.
I find that when I'm talking I stumble over my words a lot. Sometimes the word just doesn't come out right and I have to repeat it. I've also got a persistent itch in my throat which has led to a bad cough (which never gets rid of it).
My gait has been limpy for a long time, and other people have noticed this and brought it up to me. My leg muscles are also very commonly sore and stiff, especially in the morning. In fact, a lot of my muscles are sore a lot of the time.
If I squat down or apply any force to my legs muscles in certain ways, my legs start to shake violently out of control. Same applies to my arms but to a lesser extent.
I've lost about 5% of my weight over the past 4 months (and I was already pretty underweight before this all started). I don't try to waste my time looking for atrophy since I know I would probably just find a normal dent and get worried about it.
My neurologist ran a basic exam a few months ago and said I had hyperreflexia in the legs. His exact words were "very brisk" and the followup report itself said a diagnosis of hyperreflexia. He scheduled another MRI of the spine over 6 months out. He said that he doesn't think an EMG is necessary unless the MRI of the spine shows nothing abnormal.
I've had a clean MRI of the head, and almost every blood test imaginable has also been clean.
So my question is, does this sound like JALS? From what I've read, it presents different from normal ALS and often has a lot of the things I'm experiencing. However, I don't want to be a Google doctor so I want to ask all of you: do you think I should push to get an EMG sooner?
Again, thank you for your time.
First of all I appreciate all of the time any of you take to respond to this thread. You are all doing God's work dealing with so many heavily anxious people for nothing in return.
Being up front, I'm only 18. I'm well aware of the chances, but I just want to hear someone's input on whether I should try to push for an EMG.
I've had widespread twitches for about 3 or 4 months, most commonly historically in my calves, thighs, arms, back, and chest. However recently this twitching has spread to my tongue (at rest) and other parts of my face, especially the right side of my lower lip. This specific area has been twitching pretty constantly for the past 3 days, which is a slower twitch that almost feels like something is pulling on the muscle.
When I smile, it's slightly uneven with the side that twitches a lot not smiling as much.
I find that when I'm talking I stumble over my words a lot. Sometimes the word just doesn't come out right and I have to repeat it. I've also got a persistent itch in my throat which has led to a bad cough (which never gets rid of it).
My gait has been limpy for a long time, and other people have noticed this and brought it up to me. My leg muscles are also very commonly sore and stiff, especially in the morning. In fact, a lot of my muscles are sore a lot of the time.
If I squat down or apply any force to my legs muscles in certain ways, my legs start to shake violently out of control. Same applies to my arms but to a lesser extent.
I've lost about 5% of my weight over the past 4 months (and I was already pretty underweight before this all started). I don't try to waste my time looking for atrophy since I know I would probably just find a normal dent and get worried about it.
My neurologist ran a basic exam a few months ago and said I had hyperreflexia in the legs. His exact words were "very brisk" and the followup report itself said a diagnosis of hyperreflexia. He scheduled another MRI of the spine over 6 months out. He said that he doesn't think an EMG is necessary unless the MRI of the spine shows nothing abnormal.
I've had a clean MRI of the head, and almost every blood test imaginable has also been clean.
So my question is, does this sound like JALS? From what I've read, it presents different from normal ALS and often has a lot of the things I'm experiencing. However, I don't want to be a Google doctor so I want to ask all of you: do you think I should push to get an EMG sooner?
Again, thank you for your time.