rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
There is another thread over on the PALs forum that asks how we were diagnosed. I'm thinking that the diagnosis process is usually pretty long and involved ~ more than many want to actually chronicle here.
If one wants to know the criteria that needs to be met to receive a diagnosis, there is a Standard called the El Escorial.
It says that to investigate ALS there should be: (listed in the following order)
Weakness
Atrophy
Hyperflexia
Spacity
Progression over time.
Testing to confirm includes:
EMG & NCV
Neuroimaging
Biopsy
Neuropathology
I wonder if maybe the question is more of what was the first symptom? And I think that for those that have been diagnosed, it is that the person discovered they could not do something they used to be able to do, and took for granted up til that time.
For me, I was unable to converse like I used to. (bulbar onset) For those with limb onset, it usually seems to be everyday physical type activities that gives them difficulties - anything from holding a plate or climbing stairs, to buttoning a shirt.... ~ not seeing how many stairs one can climb after one has noticed another possible symptom, or trying to measure if that dinner plate feels heavy. The realization finds the person, not the other way around.
For most, it is a gradual perception, rather than a sudden revelation.
Sure, there are other things, muscle cramps, fatigue, etc, but the reoccurring theme is inability or difficulty with accomplishing a voluntary movement that hadn't caused trouble for them in their lives before.
Also, notice that even though fasciculations are unsettling to experience, that they are not even listed by the El Escorial
If one wants to know the criteria that needs to be met to receive a diagnosis, there is a Standard called the El Escorial.
It says that to investigate ALS there should be: (listed in the following order)
Weakness
Atrophy
Hyperflexia
Spacity
Progression over time.
Testing to confirm includes:
EMG & NCV
Neuroimaging
Biopsy
Neuropathology
I wonder if maybe the question is more of what was the first symptom? And I think that for those that have been diagnosed, it is that the person discovered they could not do something they used to be able to do, and took for granted up til that time.
For me, I was unable to converse like I used to. (bulbar onset) For those with limb onset, it usually seems to be everyday physical type activities that gives them difficulties - anything from holding a plate or climbing stairs, to buttoning a shirt.... ~ not seeing how many stairs one can climb after one has noticed another possible symptom, or trying to measure if that dinner plate feels heavy. The realization finds the person, not the other way around.
For most, it is a gradual perception, rather than a sudden revelation.
Sure, there are other things, muscle cramps, fatigue, etc, but the reoccurring theme is inability or difficulty with accomplishing a voluntary movement that hadn't caused trouble for them in their lives before.
Also, notice that even though fasciculations are unsettling to experience, that they are not even listed by the El Escorial