patricia1
Very helpful member
- Joined
- Sep 18, 2006
- Messages
- 1,171
- Reason
- PALS
- Diagnosis
- 7/1999
- Country
- US
- State
- newjersey
- City
- lopatcong NJ
I have been reading back post since I haven't been on while waiting for my eyemax.
I have als thirteen years since 99 .My symptoms started with a lump in my throat a scalloped tongue associated with slightly slurred speech .
I was working as a nurse for a family practice and was sent for mri,ct,spinal tap,blood tests .All perfect .
I was referred to a emg specialist who said my emg was totally normal .
And was referred to a neurologist who said I had MG. After a thorough evaluation .
I was given medication that would show improvement right away if it was MG..
No improvement at all.
I was referred to Dr.Bird a als specialist in philly who gave me another more extensive emg.Normal again . And told me to come back in six months .
Six months later brisk reflex abnormal emg but not significant.I was told he couldn't explain my symptoms.So l went on with life.
In 03 I saw Dr Belch another emg which was Not normal muscle test slightly abnormal some weakness in limbs .and called it MND
Then in 05 and six years after original symptoms l noticed difficulty getting up from a beach chair holding my grandchild and trouble with weights at the gym
Went to John Hopkin saw Jeffrey Rothstein and with records in hand and physical exam told me probable ALS in 2005. Three normal emgs the first three years
So please Don't say normal EMG means no ALS. I felt compelled to inform people on the forum that clearly show signs of als,and are given the wrong information and in some cases laughed at belittled and told to get therapy I agree a lot of the stories are really off the wall and l am quilty of getting harsh with them and shake them into reality
But again a normal emg doesn't mean no als.There is no real test only a process of eliminations sorry for the lengthy post
Pat
I have als thirteen years since 99 .My symptoms started with a lump in my throat a scalloped tongue associated with slightly slurred speech .
I was working as a nurse for a family practice and was sent for mri,ct,spinal tap,blood tests .All perfect .
I was referred to a emg specialist who said my emg was totally normal .
And was referred to a neurologist who said I had MG. After a thorough evaluation .
I was given medication that would show improvement right away if it was MG..
No improvement at all.
I was referred to Dr.Bird a als specialist in philly who gave me another more extensive emg.Normal again . And told me to come back in six months .
Six months later brisk reflex abnormal emg but not significant.I was told he couldn't explain my symptoms.So l went on with life.
In 03 I saw Dr Belch another emg which was Not normal muscle test slightly abnormal some weakness in limbs .and called it MND
Then in 05 and six years after original symptoms l noticed difficulty getting up from a beach chair holding my grandchild and trouble with weights at the gym
Went to John Hopkin saw Jeffrey Rothstein and with records in hand and physical exam told me probable ALS in 2005. Three normal emgs the first three years
So please Don't say normal EMG means no ALS. I felt compelled to inform people on the forum that clearly show signs of als,and are given the wrong information and in some cases laughed at belittled and told to get therapy I agree a lot of the stories are really off the wall and l am quilty of getting harsh with them and shake them into reality
But again a normal emg doesn't mean no als.There is no real test only a process of eliminations sorry for the lengthy post
Pat