Hello Everyone. I wanted to give an update in regards to my situation for anyone who is following my situation. I had an appointment with OSU neuromuscular unit and with the Rheumatology dept last week.
First my neuromuscular appt (this is my second opinion neurologist visit, the first said I have benign fasculations and basically ignored my other symptoms)- They did all of the usual tests…squeeze my fingers, push my hand..that stuff. The Dr. didn’t see anything abnormal there. We went over all of my symptoms. I did not mention or ask about ALS, I want to wait to see if he brings it up. He did say my blood work showed high CK levels. He said he wants to take a wait and see approach with this. I have a second appointment at the end of December.
Now- Rheumatologist- He did a ton of blood tests, probably 30. ALL came back normal EXCEPT…elevated CK level. I had this done in Early Sept, it was normal at 137. It is now high at 262. I asked the rheumatologist what it meant and his explanation was that CK levels become elevated when a muscles cells are dying or injured and releasing this into the blood stream. I then asked him if there was a relation to ALS and he said it is a possibility but there are other things that could cause this as well. Follow up here is in 4 months
I am still having neck pain, I have a constant tickly in my throat and cough a lot (for past 3 months), any strenuous physical activity causes my muscles to be so sore, especially my neck. I still have tongue impressions, I still have muscle twitching, I still have less every than usual, I still have dry eyes (especially left), and I still have to constantly clear phlegm from my throat.
When I did some internet research on CK levels and ALS I found that most say that in 50-70% of cases people with ALS present with high CK levels? My question is to people with a possible or firm diagnosis, did you or do you have elevated CK? Please give me feedback on this.
Thanks everyone, next update will be in December or sooner if anything dramatically changes.
CB in Ohio
First my neuromuscular appt (this is my second opinion neurologist visit, the first said I have benign fasculations and basically ignored my other symptoms)- They did all of the usual tests…squeeze my fingers, push my hand..that stuff. The Dr. didn’t see anything abnormal there. We went over all of my symptoms. I did not mention or ask about ALS, I want to wait to see if he brings it up. He did say my blood work showed high CK levels. He said he wants to take a wait and see approach with this. I have a second appointment at the end of December.
Now- Rheumatologist- He did a ton of blood tests, probably 30. ALL came back normal EXCEPT…elevated CK level. I had this done in Early Sept, it was normal at 137. It is now high at 262. I asked the rheumatologist what it meant and his explanation was that CK levels become elevated when a muscles cells are dying or injured and releasing this into the blood stream. I then asked him if there was a relation to ALS and he said it is a possibility but there are other things that could cause this as well. Follow up here is in 4 months
I am still having neck pain, I have a constant tickly in my throat and cough a lot (for past 3 months), any strenuous physical activity causes my muscles to be so sore, especially my neck. I still have tongue impressions, I still have muscle twitching, I still have less every than usual, I still have dry eyes (especially left), and I still have to constantly clear phlegm from my throat.
When I did some internet research on CK levels and ALS I found that most say that in 50-70% of cases people with ALS present with high CK levels? My question is to people with a possible or firm diagnosis, did you or do you have elevated CK? Please give me feedback on this.
Thanks everyone, next update will be in December or sooner if anything dramatically changes.
CB in Ohio