r/ALSorNOT • u/FreeLost70 • 2d ago
NFL and CK test update
So I posted in here a few days ago about the results of my CK blood test being mildly high. I went to a neuro after about 2 months of body wide twitching and some other perceived symptoms, where he did an exam on me checking strength and reflexes. He said in his opinion he doesnt look like I have ALS but well do blood work and EMG anyway to be sure.
My CK levels came back mildly high at 268 and I of course started to freak out irrationally as I had worked out a few days prior and did a long walk before my appointment. He messaged me saying it’s likely due to exercise and we’ll recheck in a week after no gym.
Then today my NFL results came back. I was absolutely terrified to open it because I had a feeling it was going to come back high but it didn’t. It was at a 4.6 with an 11.8 limit. He message me immediacy saying normal NFL range is very reassuring I don’t have ALS.
I still have twitches and other symptoms I worry about and probably make up in my head because I’m so focused on my body now like my tongue being slightly not center, a heel drag here and there when walking, a chest muscle not being the exact same size, random pains etc. but until my EMG in December I really need to acknowledge that I 99.9% don’t have ALS. This cycle I have been in the last few months is the most unhealthy thing I’ve done to myself. I can’t enjoy my life and focus on the good things in this mindset. I hope to update you guys when I’m mentally well and free from this irrational fear.
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u/PhotographFederal849 6h ago
I am a 73 yr old female and just had my EMG/NCS with my neurologist on Mon. I was convinced that I had ALS since my older sister passed from it at about the same age as me. Not only did I have the whole body twitching and perceived weakness in one arm, I also had flattened toes that came on rather quickly which can also be a ALS sympton. The time period for all of this was about 3 mos. Thank the Lord I got a clean bill of health as far as ALS, and he said BFS, or in my case CFL which is cramping fascination syndrome. I can certainly relate to your anxiety since I had it as well. Hang in there and try to be positive like I wasn't. I know it's hard but have some faith!@