jamesond
New member
- Joined
- Mar 25, 2015
- Messages
- 8
- Reason
- Friend was DX
- Country
- US
- State
- UT
- City
- Provo
Hi:
I haven't posted much as it's been a whirlwind following my best friend and cousin's death last year. He was diagnosed with a genetic form of ALS.
Apparently the gene responsible is called "SOD1." I also have the gene. I'm in my mid 40s.
At the time of his diagnosis, I had my blood tested and among the things they checked for were "CK" levels. They told us these are sometimes elevated in ALS. At the time, my CK was 91 (in the normal range).
Three weeks ago, my left shoulder muscle started twitching. It hasn't stopped. Given my family history, I saw my PCP who ran another CK test. It has risen to 293.
In addition to the twitching, there are strange sensations in the muscles of that arm. It feels like when a nurse puts a wrap around your arm and takes blood pressure, only far more subtle.
I'm giving it time to go away on its own, and have a follow-up in a few weeks. But I was curious if this type of CK elevation is concerning. What's an ALS-level CK value?
My cousin complained of muscle symptoms in his limbs, but mostly it was fatigue and cramping. He didn't initially present with weird arm sensations or twitching. He just started dropping things. So I'm not sure what to make of this.
I haven't posted much as it's been a whirlwind following my best friend and cousin's death last year. He was diagnosed with a genetic form of ALS.
Apparently the gene responsible is called "SOD1." I also have the gene. I'm in my mid 40s.
At the time of his diagnosis, I had my blood tested and among the things they checked for were "CK" levels. They told us these are sometimes elevated in ALS. At the time, my CK was 91 (in the normal range).
Three weeks ago, my left shoulder muscle started twitching. It hasn't stopped. Given my family history, I saw my PCP who ran another CK test. It has risen to 293.
In addition to the twitching, there are strange sensations in the muscles of that arm. It feels like when a nurse puts a wrap around your arm and takes blood pressure, only far more subtle.
I'm giving it time to go away on its own, and have a follow-up in a few weeks. But I was curious if this type of CK elevation is concerning. What's an ALS-level CK value?
My cousin complained of muscle symptoms in his limbs, but mostly it was fatigue and cramping. He didn't initially present with weird arm sensations or twitching. He just started dropping things. So I'm not sure what to make of this.
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