wkamp001
Member
- Joined
- Oct 5, 2023
- Messages
- 12
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Midland
Please see my earlier post below.
EMG Results
I will not press for assurance, merely hoping for insights/opinions and to give others a look at the process. Please merely delete this thread instead of blocking me if this poses any sort of rule break.
So, I have some updates. On 10/25 I had my upper-body EMG re-performed by a neurologist and it came back normal, yay! Besides for a mild carpal tunnel in my right hand.
I drove back happy and keen to focus in on and crush my health anxiety as a pure focus for 2023 and 2024. I'm pulling back into my driveway when I get an email from my neurologist. It's asking "when are you getting your upper EMG done, the doctor wants to know because your CK (Creatine Kinase) levels came back at 8,200 yesterday. I sent my doctor the results and he said that I am being referred to a neuromuscular specialist. They scheduled for APRIL.
I worked out the night before, and it was fairly intense, but to the level where it caused my CK levels as well as liver enzyme levels to shoot that high? Idk, and neither does my doctor. I went to the hospital on last Friday and they dropped from 8,200 to 825 from Tuesday to then.
I don't know what to expect next. I got with my PCP to re-do the referral since the neurologist used the initial health code from why I first made my appointment to make the referral, and this caused it to be pushed out. My PCP put the full gamut of symptoms on the new referral, so hopefully things should move along faster.
Here I have some questions for those more knowledgeable though. Do I want it to move faster? I've heard ALS and other neurological conditions can take a while to present both symptoms and test results. Should I be trying to wait to see how things go? Is it possible/likely that with my symptoms and previous testing (listed below) that I could have ALS that simply isn't presenting yet? At this point my muscles are declining. I have not been going to the gym since mid-September out of fear of what I can and cannot do, and no one is helping clarify any limitations.
Symptoms: Arms shaking considerably during flexing or stabilizing. Calves also shaking, though to a lesser extent. Cold sensitivity causing rigidity, muscle stiffness, and convulsions if it's bad enough at night - also seems to be tied to stress. Tightness in shoulders,upper back, and arms if I sleep on stomach (with arms extended to sides). Hypnic jerks (since 2017), random fasciculations everywhere (since 2017).
Potential symptoms (Symptoms that change throughout the day, based on stress or other factors like mood or food, or that I am otherwise uncertain of): Unsteady gate, burning on surface of muscles, pain in mid-back, energy in muscles like they are trying to twitch or spaz, inaccuracy typing on phone.
Tests currently performed:
Brain MRI w/contrast performed 2/23 came back clean
Upper EMG performed 10/2 by physiatrist came back with pinched nerves (cervical rediculopathy).
Cervical MRI without contrast performed 10/10 which came back clean (no pinched nerves)
Lower EMG performed 10/11 by neurologist's office that came back clean
Upper EMG performed 10/25 by neurologist's office that came back clean
CK (Creatine Kinase) testing on 10/24 that came back as 8,200
CK (Creatine Kinase) testing on 10/27 that came back as 825.
I know this is a lot, and would like to thank you all for any help with recommendations for looking into things faster or further based on your experience or knowledge.
EMG Results
I will not press for assurance, merely hoping for insights/opinions and to give others a look at the process. Please merely delete this thread instead of blocking me if this poses any sort of rule break.
So, I have some updates. On 10/25 I had my upper-body EMG re-performed by a neurologist and it came back normal, yay! Besides for a mild carpal tunnel in my right hand.
I drove back happy and keen to focus in on and crush my health anxiety as a pure focus for 2023 and 2024. I'm pulling back into my driveway when I get an email from my neurologist. It's asking "when are you getting your upper EMG done, the doctor wants to know because your CK (Creatine Kinase) levels came back at 8,200 yesterday. I sent my doctor the results and he said that I am being referred to a neuromuscular specialist. They scheduled for APRIL.
I worked out the night before, and it was fairly intense, but to the level where it caused my CK levels as well as liver enzyme levels to shoot that high? Idk, and neither does my doctor. I went to the hospital on last Friday and they dropped from 8,200 to 825 from Tuesday to then.
I don't know what to expect next. I got with my PCP to re-do the referral since the neurologist used the initial health code from why I first made my appointment to make the referral, and this caused it to be pushed out. My PCP put the full gamut of symptoms on the new referral, so hopefully things should move along faster.
Here I have some questions for those more knowledgeable though. Do I want it to move faster? I've heard ALS and other neurological conditions can take a while to present both symptoms and test results. Should I be trying to wait to see how things go? Is it possible/likely that with my symptoms and previous testing (listed below) that I could have ALS that simply isn't presenting yet? At this point my muscles are declining. I have not been going to the gym since mid-September out of fear of what I can and cannot do, and no one is helping clarify any limitations.
Symptoms: Arms shaking considerably during flexing or stabilizing. Calves also shaking, though to a lesser extent. Cold sensitivity causing rigidity, muscle stiffness, and convulsions if it's bad enough at night - also seems to be tied to stress. Tightness in shoulders,upper back, and arms if I sleep on stomach (with arms extended to sides). Hypnic jerks (since 2017), random fasciculations everywhere (since 2017).
Potential symptoms (Symptoms that change throughout the day, based on stress or other factors like mood or food, or that I am otherwise uncertain of): Unsteady gate, burning on surface of muscles, pain in mid-back, energy in muscles like they are trying to twitch or spaz, inaccuracy typing on phone.
Tests currently performed:
Brain MRI w/contrast performed 2/23 came back clean
Upper EMG performed 10/2 by physiatrist came back with pinched nerves (cervical rediculopathy).
Cervical MRI without contrast performed 10/10 which came back clean (no pinched nerves)
Lower EMG performed 10/11 by neurologist's office that came back clean
Upper EMG performed 10/25 by neurologist's office that came back clean
CK (Creatine Kinase) testing on 10/24 that came back as 8,200
CK (Creatine Kinase) testing on 10/27 that came back as 825.
I know this is a lot, and would like to thank you all for any help with recommendations for looking into things faster or further based on your experience or knowledge.
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