- Aug 18, 2021
- Learn about ALS
I pray for all that suffer from this disease and i'm thankful that you take time to answer others who are in distress. My name is Yusef. I am a 48 year old African American male and I'm hoping you guys can help me with my concerns. April 29th, I went to the ER due to having Rhabdomyolysis. My CK level was at about 1500 and i was treated with IV fluids. over the course of 4 months, i have had repeated visits to the ER for the reoccurrence of the condition. My CK levels have stayed moderately elevated and i have seemed to have lost a lot of muscle mass. Over the course of approximately 4 months, I have lost over 25 lbs. I have not been the weight that I am in 15 years. CBC panel was normal, Liver count all were normal. Here as of late, I'm experiencing fasciculations ( muscle twitching) that originated in my right calf. It has progressively moved to other regions of the body over the course of 3 days ( thighs, lower back, triceps, top of my head. My legs and face constantly burn. it is like I'm on fire. my toes on my left foot feel stiff at times as do my left bicep. I'm walking fine, my strength seems to be ok. No clumsiness, stumbling or falling. As of now, my coordination is intact. I have an appt for an EMG in a few days and I'm terrified. when I googled Fasciculations, ALS appeared and now my anxiety and fear is through the roof. No appetite, not sleeping good. I'm just a hot mess. My question is are Creatinine Kinase (CK) levels elevated at the onset of ALS. I ask this because of the loss of muscle mass that comes with the disorder. Another thing... If I stand up for a long period of time, my legs (thighs) will go numb to the point where if I touch them I cant feel anything. I'm really scared.