@johnw
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JohnW replied to the topic Is NF-L in CSF Lumbal Puncture a reliable BioMarker? in the forum Diagnosis Information and General Questions 4 months, 1 week ago
Hi Rony
You might find that a muscle biopsy where your muscle function is reduced to help make the determibation. That was instrumental for me getting the ALS diagnosis after 2 years of EMG and othet tests.
Best Wishes
John -
JohnW replied to the topic Disease Progression in the forum Living With ALS 4 months, 1 week ago
Hello Maya
A good way to track your Alsfrs is with the ALS therapy institute’s Precision Medicine Program. You can look it up then enroll. They also measure limb activity with small tracking devices you strap onto wrists and ankles. Take a look and see what you think…ive been doing tbis for over two years now and find it very helpful. -
JohnW posted a new activity comment 10 months ago
Thanks Dagmar
Much appreciated! -
JohnW became a registered member 10 months ago
Hello JohnW,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
Thanks Dagmar
Much appreciated!
Hello John, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]