Very worried...

[Nick11]

Hi Everyone, my name is Nick and I’m 35 years old. First, my deepest condolences and respect to all who have and are struggling with this terrible disease. I’ll try to keep this short. Starting in 2017 I noticed a slight difficulty with swallowing with solids; it progressed to now I have to drink something with anything solid (Literally every meal. Especially breads and meats) for the exception of say an apple or certain salads. In January 2019, I finally went to a GI doctor who performed an upper endoscopy and found no issues. In November 2019, my left bicep and right thigh started twitching, now the twitching has spread everywhere (tongue, eyes, lips, neck, back, chest, stomach, butt, both arms, shoulders, legs (especially right calf and front of lower right leg, cramps too), still significant in the starting locations). Also, the backside of my right hand between middle finger and pinky is showing muscle wasting. I do have some weakness there when I'm typing or using my right hand. I went to a neurologist last month, she said my reflexes are brisk but she said my strength is good; she doesn't seem overly concerned. However, she ordered an MRI, blood work, and video swallow test; They all came back normal. I asked to have an EMG which is scheduled for next month. I’ve always been athletic and I just feel like something is not right. I’ve been trying to fight fear and anxiety. Any thoughts would be greatly appreciated.

 

[KarenNWendyn]

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If the neurologist thought your strength was good, then I wouldn’t be worried. Little fingers are often weaker than the others. That’s not necessarily abnormal. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. The EMG results should be reassuring.

 

[Nick11]

The last few months have been stressful. Thank you for the reassurance.

 

[Nick11]

Good Morning Everyone, I posted on January 27th and I wasn't sure how to start a new conversation under that post; my apologies for that. I had my EMG on Monday afternoon. The doctors were very nice and said everything looked good. However, my concern is that they only did my right side (including my back and shoulder). They didn’t do any bulbar muscles. The reason this concerns me is my twitching spread everywhere to include my tongue, lips, neck, and chin (my left bicep has twitched every 5 to 10 seconds since November without stopping, 24/7). My greatest concern is that I’ve been sporadically slurring some of my words, more so especially at night when I’m tired. I did explain that to them when they asked what my symptoms were. I've already messaged my neurologist about my concern but wanted to know what your opinions are. Could this be early onset bulbar that wasn't picked up on my EMG? I know that nothing is certain but what are the chances of that occurring? Thanks for your thoughts.

 

[Nikki J]

You have been emg’d where you twitch, claim muscle wasting and weakness. No you didn’t need a bulbar emg. You have all these symptoms in your extremities and got an emg. You really think they are something else and coincidentally you now have bulbar ALS?

 

[Nick11]

Hi Nikki, I know.... it sounds ridiculous. However, I’ve read where a normal EMG that was performed only on the limbs and not any bulbar muscles ended up being ALS. I’ve just been extremely stressed out about all of this. I’m married with 3 little ones who all depend on me. Trying to be mentally present and push through the anxiety has been a challenge. Thanks for replying.

 

[KarenNWendyn]

All we can do on this forum is give you our opinion that your situation does not sound like ALS. With a clean EMG and normal strength exam, you’re clear. It’s you choosing to continue being anxious. And you’re asking people here who are dying of ALS to soothe your anxiety. Not fair! People here would love to have normal strength and a clean EMG.

Please seek help for your anxiety and enjoy your life rather than chasing a disease you don't have. Talk to your doctors if you still have concerns.

 

[Nick11]

You're right, I'm sorry I upset you. I really am so grateful for your opinions and admire the courage you all have.