tworoadsdiverge
Member
- Joined
- Jan 7, 2021
- Messages
- 12
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MD
- City
- Potomac
I’d like to start off by apologizing for coming into this community to seek help rather than offer support. I’m glad we live in a day and age where such a thing exists on the internet for all these amazing people to connect, and I feel intrusive posting this as I haven’t been diagnosed.
My symptoms started when both of my legs began to fasciculate. I have a history of a ruptured disc in my L5:S1 vertebrae, and we are still unsure if they correlate because of the onset of all of my other symptoms simultaneously. The rareness of this injury for people my age (I was 14) already has me worried when people mention the rareness of JALS.
Fasciculations began to get worse after 5 days, and then my right thumb began to tremble as I used it. This “thumb muscle” began to feel sore and weak. This weakness spread to the other side of my hand and up my arm as well, but has since subsided and I believe much of it could have been in my head. The weakness I felt was such that typing for a short amount of time my right arm would feel significantly fatigued compared to my left.
Since then, muscles in my neck twitch about 10 times a day, different muscles in my face including my nose, eyelids, lips, and sometimes but rarely muscles in my right arm. My right shoulder has felt much weaker than my left, and is noticeably sore, almost like I worked it out hard. My right leg also feels weaker than my left, with the muscles being visibly slightly smaller. My shoulder on my right side is also visibly slightly smaller. Finally, I’ve noticed periodic trembling in my muscles mostly on the right side when using them. No action feels very smooth anymore.
I was given 3 MRIs which were all clean and an EMG/nerve conduction study about 1 month after symptoms started, which was also clean. My neurologist has had most of her contact with my mom, but I intend to speak with her tomorrow to ask her questions myself. She does not know that my symptoms are worsening. Interestingly enough, my legs mostly stopped fasciculating during the EMG but continue to worsen day to day. This is only in legs.
What tipped me to the point of posting here was last night when my friend sent me a video of me laughing in which my smile was slightly uneven, biased toward the left side. In doing some tests with my facial muscles of smiling hard and flexing the muscles individually, the right side of my face feels weaker and now feels tight after doing these tests, which my left does not. In reading about ALS, I identified facial spasticity as a symptom and have worried myself to death over the past day.
Any help at all would be appreciated, and I appreciate your patience to everyone reading this as I understand a lot of people post here asking similar questions to mine. I guess I am just seeking some reassurance in this, when faced with the possibility of my life ending so shortly (although I understand the clean EMG and other symptoms point away from ALS). Thank you all so much and happy new year to all. Looking forward to connecting with you amazing people!
Oh! Forgot to note. I have lost about 10 pounds over the past month for no reason. Since the fasciculations began, I have stopped my daily running. It is strange to me how with no exercise I have lost 10 pounds. I now weigh 134 and am 6’0. Which is a bit concerning to me
My symptoms started when both of my legs began to fasciculate. I have a history of a ruptured disc in my L5:S1 vertebrae, and we are still unsure if they correlate because of the onset of all of my other symptoms simultaneously. The rareness of this injury for people my age (I was 14) already has me worried when people mention the rareness of JALS.
Fasciculations began to get worse after 5 days, and then my right thumb began to tremble as I used it. This “thumb muscle” began to feel sore and weak. This weakness spread to the other side of my hand and up my arm as well, but has since subsided and I believe much of it could have been in my head. The weakness I felt was such that typing for a short amount of time my right arm would feel significantly fatigued compared to my left.
Since then, muscles in my neck twitch about 10 times a day, different muscles in my face including my nose, eyelids, lips, and sometimes but rarely muscles in my right arm. My right shoulder has felt much weaker than my left, and is noticeably sore, almost like I worked it out hard. My right leg also feels weaker than my left, with the muscles being visibly slightly smaller. My shoulder on my right side is also visibly slightly smaller. Finally, I’ve noticed periodic trembling in my muscles mostly on the right side when using them. No action feels very smooth anymore.
I was given 3 MRIs which were all clean and an EMG/nerve conduction study about 1 month after symptoms started, which was also clean. My neurologist has had most of her contact with my mom, but I intend to speak with her tomorrow to ask her questions myself. She does not know that my symptoms are worsening. Interestingly enough, my legs mostly stopped fasciculating during the EMG but continue to worsen day to day. This is only in legs.
What tipped me to the point of posting here was last night when my friend sent me a video of me laughing in which my smile was slightly uneven, biased toward the left side. In doing some tests with my facial muscles of smiling hard and flexing the muscles individually, the right side of my face feels weaker and now feels tight after doing these tests, which my left does not. In reading about ALS, I identified facial spasticity as a symptom and have worried myself to death over the past day.
Any help at all would be appreciated, and I appreciate your patience to everyone reading this as I understand a lot of people post here asking similar questions to mine. I guess I am just seeking some reassurance in this, when faced with the possibility of my life ending so shortly (although I understand the clean EMG and other symptoms point away from ALS). Thank you all so much and happy new year to all. Looking forward to connecting with you amazing people!
Oh! Forgot to note. I have lost about 10 pounds over the past month for no reason. Since the fasciculations began, I have stopped my daily running. It is strange to me how with no exercise I have lost 10 pounds. I now weigh 134 and am 6’0. Which is a bit concerning to me