ianaussie
New member
- Joined
- Aug 3, 2024
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- AU
- State
- SY
- City
- Sydney
Hello and thank you for your time .
I am a 52 year old male that started experiencing symptoms roughly 12 months ago.
Symptoms started after being given statins for cholesterol.
I first started noticing a feeling of heavy legs . I went to my local GP who ordered blood tests .
My results were high creatine kinase of 545 .
I was told to stop medication and get bloods taken again in 3 months three months later ck was 422 still high and referred to rheumatologist.
Rheumatologist orders bloods does clinical exams no muscle weakness ck tested again and comes back at 1230 . Told to do no exercise and return in 7 days .
Ck tested again this time 213 normal . Told to do light exercise and return for another ck test this time raised to 526 ..
referred to neurologist specialist .
Wait 6 months for neurologist appointment clinical exam shows no muscle weakness orders emg and nerve conduction study .
During this time fasculations start initially in the Calf’s and then spread body wide . Emg results come back normal except for fasculations .
Genetic testing ordered and still waiting results .
Referred to another neurologist for clinical exams.
Left scapula mildy prominent compared to right . No clinical weakness detected emg and bloods order again in 6 months .
I am concerned that this may be an early onset of MND . I have been told that there is no evidence to suggest this . Which I understand but the constant fasculations and elevated ck keep me guessing .
Thank you for your time .
I am a 52 year old male that started experiencing symptoms roughly 12 months ago.
Symptoms started after being given statins for cholesterol.
I first started noticing a feeling of heavy legs . I went to my local GP who ordered blood tests .
My results were high creatine kinase of 545 .
I was told to stop medication and get bloods taken again in 3 months three months later ck was 422 still high and referred to rheumatologist.
Rheumatologist orders bloods does clinical exams no muscle weakness ck tested again and comes back at 1230 . Told to do no exercise and return in 7 days .
Ck tested again this time 213 normal . Told to do light exercise and return for another ck test this time raised to 526 ..
referred to neurologist specialist .
Wait 6 months for neurologist appointment clinical exam shows no muscle weakness orders emg and nerve conduction study .
During this time fasculations start initially in the Calf’s and then spread body wide . Emg results come back normal except for fasculations .
Genetic testing ordered and still waiting results .
Referred to another neurologist for clinical exams.
Left scapula mildy prominent compared to right . No clinical weakness detected emg and bloods order again in 6 months .
I am concerned that this may be an early onset of MND . I have been told that there is no evidence to suggest this . Which I understand but the constant fasculations and elevated ck keep me guessing .
Thank you for your time .
