april142
New member
- Joined
- Aug 4, 2024
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- DK
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.
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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