Enun
New member
- Joined
- Nov 17, 2023
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- ID
- City
- Moscow
Hello!
I am a 19 y/o male from the US having some progressive health issues. I am about 3 months from the onset of my symptoms and have had a plethora of testing done with no answers and I am beginning to worry it could be ALS.
It all started with a very bizarre feeling I’m both of my legs, as if they were disconnected from my body. Not quite numb but they did not feel stable or very strong. Really shaky and just an overall feeling of weakness. Then the following week that feeling spread to the upper parts of my arms and down through my wrists into my hands. Within the same month of this occurring I began to have a really hard time swallowing, even my saliva and liquids struggled to move down my esophagus. At this point I started to get worried and made an appointment with my doctor. I had an entire blood panel done paired with autoimmune testing and everything came back clean. After this period my fingers started to shake viciously twitching and shaking. I also began having bladder and bowel urgency having trouble holding it in, and the bowel movements themselves were irregular.
After my CBC came back normal my doctor ordered chest and spine x-rays all of which came back normal. My doctor also ordered a bilateral upper and lower NCS along with an EMG all of which came back completely clean. My persisting dysphasia was causing me a lot of anxiety as well so my doctor ordered a barium swallow study and I was told that I have Esophageal Dysmotility. I have a GI appointment at the end of this month to see what is going on, did anyone else have a similar dysfunction with their esophagus during the onset of their symptoms? I know that can happen in Bulbar ALS, but I’m not sure if that paired with the overall feeling of weakness in my limbs is a typical for ALS.
More recently my tongue and lips have been having a lack of feeling and I almost feel like I am slurring my words. I have also been having balance issues struggling to walk in a straight line for extended periods. Along with the facial related issues I have began to have muscle twitches all over my body and very frequently too, a random contraction in muscles from neck to feet. As well as sudden jerks in my legs and arms. My doctor recently prescribed me Gabopentn for my muscle related pain which comes and goes, and I’m skeptical if that was the right decision or not. It makes me feel really out of it, and has a plethora of other side effects. Another thing I forgot to mention which is concerning to me is that when I do any sort of abdominal related workout such as leg lifts, my body shakes vigorously which is abnormal for me because I am in relatively good shape. I’m not sure what is happening and I am not sure if I am in the right place but this whole process has been very depressing and I have not been able to be active like I enjoy and my mental health is taking a significant toll.
Upon reading other’s threads I realize that I do not have clinical weakness as I have not lost any sort of muscle function except for in my throat. Aside from the clean EMG’s in my limbs I am anxious that maybe we missed something because I did not have one done for my throat and facial muscles. The muscle twitching also started happening after I had my EMG’s done so I don’t know if I got them done too soon.
I apologize for such a long thread and for the jumbled order of symptoms but any response would be much appreciated. Thank you for reading.
I am a 19 y/o male from the US having some progressive health issues. I am about 3 months from the onset of my symptoms and have had a plethora of testing done with no answers and I am beginning to worry it could be ALS.
It all started with a very bizarre feeling I’m both of my legs, as if they were disconnected from my body. Not quite numb but they did not feel stable or very strong. Really shaky and just an overall feeling of weakness. Then the following week that feeling spread to the upper parts of my arms and down through my wrists into my hands. Within the same month of this occurring I began to have a really hard time swallowing, even my saliva and liquids struggled to move down my esophagus. At this point I started to get worried and made an appointment with my doctor. I had an entire blood panel done paired with autoimmune testing and everything came back clean. After this period my fingers started to shake viciously twitching and shaking. I also began having bladder and bowel urgency having trouble holding it in, and the bowel movements themselves were irregular.
After my CBC came back normal my doctor ordered chest and spine x-rays all of which came back normal. My doctor also ordered a bilateral upper and lower NCS along with an EMG all of which came back completely clean. My persisting dysphasia was causing me a lot of anxiety as well so my doctor ordered a barium swallow study and I was told that I have Esophageal Dysmotility. I have a GI appointment at the end of this month to see what is going on, did anyone else have a similar dysfunction with their esophagus during the onset of their symptoms? I know that can happen in Bulbar ALS, but I’m not sure if that paired with the overall feeling of weakness in my limbs is a typical for ALS.
More recently my tongue and lips have been having a lack of feeling and I almost feel like I am slurring my words. I have also been having balance issues struggling to walk in a straight line for extended periods. Along with the facial related issues I have began to have muscle twitches all over my body and very frequently too, a random contraction in muscles from neck to feet. As well as sudden jerks in my legs and arms. My doctor recently prescribed me Gabopentn for my muscle related pain which comes and goes, and I’m skeptical if that was the right decision or not. It makes me feel really out of it, and has a plethora of other side effects. Another thing I forgot to mention which is concerning to me is that when I do any sort of abdominal related workout such as leg lifts, my body shakes vigorously which is abnormal for me because I am in relatively good shape. I’m not sure what is happening and I am not sure if I am in the right place but this whole process has been very depressing and I have not been able to be active like I enjoy and my mental health is taking a significant toll.
Upon reading other’s threads I realize that I do not have clinical weakness as I have not lost any sort of muscle function except for in my throat. Aside from the clean EMG’s in my limbs I am anxious that maybe we missed something because I did not have one done for my throat and facial muscles. The muscle twitching also started happening after I had my EMG’s done so I don’t know if I got them done too soon.
I apologize for such a long thread and for the jumbled order of symptoms but any response would be much appreciated. Thank you for reading.
