Symptoms keep getting worse, but good results

april142

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Aug 4, 2024
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Learn about ALS
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I have 1 clean emg, neurofilament light chain blood test was 5ng/l which is very low and one good exam of a neurolog.

But my symptoms keep getting worse. Twitching all over the body, even my back and throat, my left leg is thinner and weaker, my left arm is weaker and the muscle between thumb and point finger is almost gone. I keep thinking that it is als in a early state and if it will continue this way it will be hard for me to walk in about 6 months.

The symptoms started 1 year ago in my left leg, it was stiff.

What should i do? Is it possible to have als in a very early state and emg and nfl dont show it yet. (My dr first said that it was pointless to do these tests so early because it will not show anything anyway but then changed his mind and send me to it anyway, probably because i was so worried) What else could it be? My uncle had als so i am a bit worried that it is in our family.

They have tested everything that is possible to test in the blood, eneg and Mr x-ray but nothing is wrong. Is there any other tests I can ask my nerolog about? Since I keep getting worse it is hard for me to just be happy and accept the testresultats. And i have heard that there is people who has been told by doctors they do not have als because of food results but then later got there diagnos anyway. And i know that it is hard to diagnos because it is so different for everyone. 🙏🏻❤️

Ps. Sorry about the English, it is not my first language.
 
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I would return to your primary care clinician as this sounds systemic if anything, possibly postviral. It does not sound like ALS, nor does it appear that there is any other evidence for concern. Your PCP can also refer you to a physio to see if your L side can be rehabilitated, which could also provide more information about the underlying cause(s).

Any stories you have read about diagnostic delay relate to people who physically can't do the things they used to at all. A year in from a stiff leg, you would be writing about different things if you had ALS.
 
Thank you so much for you answer!

My neurolog gave me a ultrasound on the muscles and soon I will do another emg.
I just keep getting weaker and now also symptoms from my throat. Trouble swallowing and raising my voice. It is a bit strange that all of my symptoms is on the left side only.
I am so scared but my neurolog do not think it is ALS but cant tell what it is and really wants to be 100 % sure. I am so thankful for that and hope the tests will keep come back positive 🙏🏻
 
I had a new nfl (blood) and it was 6,3 and last time (2 months ago) it was 5.
Does anyone know if it is ok?
I am suppose to have under 10 so i guess that its good but that it has rise in only 2 months??
I am trying to reach my nero but he is not calling me back.
 
This is fine. Nfl can vary for a number of factors including time of day and also things in the lab.
 
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