Jselliott07
Active member
- Joined
- Nov 26, 2019
- Messages
- 45
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IA
Latest thread
I’m still here. I wish I was totally back to pre ALS fears but I’m not.
A little update on what’s going on, I still have the twitching/rolling of muscles. I have what I feel like is slurring but my husband said he’s not sure. I have difficulty swallowing, not every single time I eat but a lot of the time. I have lost a ton of weight and muscle mass. My muscles shake uncontrollably whenever I try to engage them. Driving is very difficult and recently I’m not doing it anymore because when I try to push on the petal my leg shakes uncontrollably and gives out.
Has anyone else had their weakness present that way? All of this combined with the worsening swallowing/speech and lack of strength has be reeling.
MRI didn’t show anything. He said I had a herniated disk but it isn’t compressing on any nerves and is very small and isn’t the cause of any of my current symptoms.
My doctors aren’t sure of what is happening. The doctor that performed my EMG is consulting with a neuro movement specialist to see if she has any clue, but I am sadly still a square one.
The massive shaking of the muscles when trying to use, has anyone else had that happen to them? It’s like if you were trying to life something really heavy, that sort of reaction. I took a video and could attach it if that would help.
If you have more bulbar issues, does it at some point show on an emg of the body or is that not seen until it’s already known before affecting the body?
I have a call into Mayo. I live in the Midwest and have stumped my docs here, so they think referring out might be our next step. It’s a very scary place to be, and at this point I’m just really sad and scared.
(for the shaking/weakness, I’m not on any meds so it’s not due to medication).
I know no one can diagnose over the internet, and I know everyone is different, I’m just wondering if anyone else’s experiences are similar or have dealt with anything like this.
I’m still here. I wish I was totally back to pre ALS fears but I’m not.
A little update on what’s going on, I still have the twitching/rolling of muscles. I have what I feel like is slurring but my husband said he’s not sure. I have difficulty swallowing, not every single time I eat but a lot of the time. I have lost a ton of weight and muscle mass. My muscles shake uncontrollably whenever I try to engage them. Driving is very difficult and recently I’m not doing it anymore because when I try to push on the petal my leg shakes uncontrollably and gives out.
Has anyone else had their weakness present that way? All of this combined with the worsening swallowing/speech and lack of strength has be reeling.
MRI didn’t show anything. He said I had a herniated disk but it isn’t compressing on any nerves and is very small and isn’t the cause of any of my current symptoms.
My doctors aren’t sure of what is happening. The doctor that performed my EMG is consulting with a neuro movement specialist to see if she has any clue, but I am sadly still a square one.
The massive shaking of the muscles when trying to use, has anyone else had that happen to them? It’s like if you were trying to life something really heavy, that sort of reaction. I took a video and could attach it if that would help.
If you have more bulbar issues, does it at some point show on an emg of the body or is that not seen until it’s already known before affecting the body?
I have a call into Mayo. I live in the Midwest and have stumped my docs here, so they think referring out might be our next step. It’s a very scary place to be, and at this point I’m just really sad and scared.
(for the shaking/weakness, I’m not on any meds so it’s not due to medication).
I know no one can diagnose over the internet, and I know everyone is different, I’m just wondering if anyone else’s experiences are similar or have dealt with anything like this.
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