Hi there everyone! 47yo male here! First things first! Thank god I found this forum! For one year now I’m googling the internet convinced I’m developing ALS!
It all started end of augustus last year (2021) when I start having a twitch under my left knee.. Googling the symptoms brought me to ALS and guess : a few weeks later I’m randomly twitching all over my body 24/7.. went to my GP.. nothing seriously wrong.. a few weeks later i started having swallowing issues like my food stays in the back of my throath.. I was also looking at my upper arms and shoulders and couldn’t get it out of my head that they were wasting.. (in fact they are smaller than before and. I have trouble keeping them above my head for a long time) Went to see a neuro in Oktober and went through a lot of tests (mri full spine, mri brain, mep, emg 4 limbs, basic neuro test) everything came back fine.. also bloodwork was okay.. went also to a ENT.. because of the swallowing issues.. some muscle was not relaxing and that’s causing the problem (swallowing).. can be neurological but probably not.. month after month was passing by and besides twitching, a feeling of weakness and rhe swalllowing nothing happened.. in oktober I went through the rabbt hole, still sure I had ALS.. the neuro did a spinal tap with some kind of neurofilament test, which is a biomarker for als.. came back clean.. from that moment i calmed down a little.. until January 2022.. still twitching and the swallowing issue brought me again to another neuro.. a professor this time specialised in ALS and the inventor of the neurofilament test.. he did extra bloodwork, another small EMG.. again everything came back fine…. My last EMG was in march and das still clean besides having all this symptoms (only swallowing get a little worse, and shortness of breath)…. Now we are almost one year later after the first symptoms (it started full blown end september).. do you guys think After a year i can put the ALS thing out of my head? It’s so difficult to believe i don’t have it.. i keep thinking it’s starting but it’s not visibile enough to be picked up by tests.. :-(.. i saw 4 different neuro’s, had so many tests…. Can it be to early to be picked up? Everybody says time passing by without progress is the best assurance.. bit how long.. To me it feels like it is progressing.. cause of the swallowing and the breathing issues
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Originally Posted by Rony1974
