Confused with symptoms

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Bayber8790

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I’m so confused and completely depressed with my symptoms and not having an answer- at first I was convinced I couldn’t have als but now I’m not sure. I was hoping I would have something come up on my mri last week because I want to know what is happening. Could I be in early stages of als ? My symptoms have been persistent but waxing and waning some since October 2021.

My current symptoms include muscle cramping, fatigue, muscle fatigue and feelings of weakness in my limbs, twitching literally everywhere, slurring of words and difficulties with word finding at times- though as of now others in my life haven’t noticed, biting my cheeks, pins and needles sometimes in my hands and feet, electric shock like sensations through my head and sometimes tingling mid spine. I also have dropping eye lids and some facial weakness. I tire when I chew at times. My grip often feels weaker at times bilaterally. Many of these symptoms come and go and aren’t all present at once. I also have persistent diarrhea and GI issues. Some blurry vision as well.

I have seen a neurologist and I am still under his care. I have received blood work, CT scan, X-ray (to rule out Thymoma), EMG of the upper limbs, MRI of the brain. All normal. My neuro exam was mostly unremarkable- reflexes and muscle strength were normal according to my neurologist and he didn’t notice any slurring when I spoke to him about that. However he did note a nystagmus and differing pupil sizes which is why I had CT and mri. He now thinks these findings are benign. I am now just going to get thyroid work up and CK levels checked as the next step.

I am so confused about all my symptoms but I will say unrelenting fatigue - including muscle fatigue and drooling eye lids are my most bothersome symptoms. I had the MG blood panel but I may push for SFEMG next.

Anyway, has anyone heard of als beginning like this? I certainly feel very weak and unwell. However I haven’t lost functioning- daily life is just harder right now. My muscles tire easier. I have also lost weight. I also am curious if an emg of the upper limbs is enough to rule out als? That emg was clean and at the time I had muscle cramping in my hand and feelings of weakness however now I worry more about my speech symptoms.
 
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lgelb

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Yes, when you have ALS, even muscles that you think are fine show clear abnormalities on an EMG. Also, what you've described doesn't sound like ALS at all.

If/as MG is ruled out, I would be working with an internist to narrow down possibilities and develop strategies to address your issues.

Best,
Laurie
 

affected

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Oh I'm sorry you are going through this.
As noted, ALS really isn't fitting this in the least, not by symptoms you report, nor by clinical exam and EMG.
That doesn't mean nothing is wrong, just that your doctors are still working to find what is going on.
I hope you get answers soon.
 
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