Could this be ALS?

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Mamabear1792

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first of all please excuse my English language. I posted on here a while back.

I was last seen in ALS clinic back in July. clinical exam was okay at the time .I was post to have a second EMG schedule but he said no .since clinical exam was okay .first EMG was in March but I’m scheduled for new EMG in December .but only on left side. tried to talk neurologist into full body one .cause I heard they can tell more like on breathing muscles and back and neck .but said no to it

anyway my symptoms .have gotten way worse. I have no daily life pretty much my symptoms are extreme weakness ,everywhere pretty much mostly legs ,and arms ,and hands ,I have muscle loss in my hands .and arms weakness in my neck and I have weak diaphragm .hard get strong cough in and difficult breathing have extreme fatigue tired all time. I have twitching muscles cramping loss of strength .could EMG of arm and leg show ALS .are would I need full body one ?

Sorry for long post thanks for your time my heart go out to you all .

previous thread: Could This Be ALS
 

Nikki J

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If you have all those symptoms then if they are due to ALS then it would certainly show. Given your previous emgs and exams it seems highly unlikely to be the issue. You need to promise yourself to believe it if it is negative again
 

Mamabear1792

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Just had another question would a sniff test tell if you could possibly have ALS it’s checking for diaphragm paralyze some kind of X-ray that looks at it thanks
 

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Mamabear how about you discuss your concerns with the doctor who ordered your tests?
Asking the terminally ill to navigate this instead of medical professionals is really not helpful for you as your doctors get to examine you and interpret what tests and results mean together with your examinations.
However, the short answer is that a sniff test does not diagnose ALS on its own, but may be part of building a full picture for discussing priority of strategies for management on a range of disease processes.
 

Mamabear1792

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I have posted on here a few times before. so just in case y’all can’t remember. my symptoms are mainly muscle weakness, muscle loss. twitching everywhere constantly, fatigue ,and tired but I wanted to mainly ask about the breathing issue. I been having hard to breathe in .and out. diaphragm feel very weak m. and tight hard get strong cough.in is that signs of respiratory .on set ALS .? Thank you wonderful people .for all you do .I’m sorry my English isn’t perfect I apologize .
 

lgelb

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There is no point in further speculation pending your second EMG next month. The first was negative and I expect the second to follow suit relative to ALS. Please do not respond until you have EMG results or a new neurology exam in hand.

Meanwhile, if you feel unwell, I'd contact your primary care physician, who can assess your heart, lungs, and breathing.
 

Mamabear1792

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I had my EMG test yesterday .they only did right leg and right arm I do still have muscle weakness but my main concern now .is shortness of breath all the time wake up from sleep gasping for air can’t Lay on back are certain spots without feeling like I’m not getting enough air .really concerned for respiratory onset ALS .I asked for emg on my diaphragm and spine .since my diaphragm is also weak and tightness feeling constantly I have had normal pulmonary function test to so have to inhale feel really tight they said my emg report was normal I .will send the full summary wants I received it so my biggest concern is respiratory onset ALs how do they pick that up on emg without doing the diaphragm? Sorry for long post and bad English
 

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They know what to test and how.
2 months ago you were sure you had limb onset.
You need to let this go and ask your doctor what they think is really going on and follow what they say.
I'm so glad you don't belong here, congratulations on another clean EMG.
 

lgelb

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If you had respiratory onset ALS, you wouldn't have normal pulmonary function testing results, and there would be some abnormalities on the EMG that you didn't have. There is no point in going further into it, because your testing is thankfully normal.

So as before, your primary care physician is the best resource for suggesting next steps. If you don't trust them, find another. You can ask if they think a sleep study is advisable to check how you breathe while you are sleeping. Lab work to make sure you do not have an infection is something else they might do or have already done.

The really good news: you don't belong here, so I'm closing your thread. Please do not start another. The resources to help you feel better out there, but they are in STL, not here. Even telehealth with a counselor might be helpful, to have more time to talk through your concerns.

All the best.
 
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