jdever9
Member
- Joined
- Mar 25, 2012
- Messages
- 24
- Reason
- PALS
- Diagnosis
- 12/2011
- Country
- US
- State
- IL
- City
- Springfield
Most confusing In Nov I started missing my mouth when I ate, then couldn't lift milk carton and by Dec I could not reach garage opener- had to move it to left side- Fam Dr says its a frozen shoulder and that we should get an MRI of my head and emg on right arm. Scan shows nothing, emg showed a lesion on my brachical lexus
After the report my fam Dr sent me to another Neurologist who had more emgs for the 4 lims and back and neck even my tongue
The report said electro evidence for anteriior horn cell disease based on widespread deinnervation in 3 limbs and paraspinal muscles. Right median neurology at wrist , dymyelinating, sensory mild. No convincing electrodiagnostic evidence for cervical radicylopathics, brachial plexopathies or myopathy.
When I returned to th neurologist, said that sometimes everthing else is ruled out and now, the only thing left it ALS. He gave me maybe 2-3 years. He referred to the local MDA clinic and left.
So I went home and told my husband who to this day does not believe I have ALS
MDA put me O2 at night and gave me a filled out and signed application for a disabled parking pass.
So now I wait - I can't get into Mayo for 3 months, but am going the NWMemorial in Chicago the end of April.
Yes I know, one day at a time, the nerves are getting the best of me and I decided at the very beginning, I was not going to cry or say WHY ME. The nurse at the Fam Dr office reminded me that God wouldn't throw anything at me, unless he knew I could handle it. So I sure hope He knows a lot more than I do if He continues to throw stuff at me! ( Should I have said SHE?) thanks for listening
janelle
After the report my fam Dr sent me to another Neurologist who had more emgs for the 4 lims and back and neck even my tongue
The report said electro evidence for anteriior horn cell disease based on widespread deinnervation in 3 limbs and paraspinal muscles. Right median neurology at wrist , dymyelinating, sensory mild. No convincing electrodiagnostic evidence for cervical radicylopathics, brachial plexopathies or myopathy.
When I returned to th neurologist, said that sometimes everthing else is ruled out and now, the only thing left it ALS. He gave me maybe 2-3 years. He referred to the local MDA clinic and left.
So I went home and told my husband who to this day does not believe I have ALS
MDA put me O2 at night and gave me a filled out and signed application for a disabled parking pass.
So now I wait - I can't get into Mayo for 3 months, but am going the NWMemorial in Chicago the end of April.
Yes I know, one day at a time, the nerves are getting the best of me and I decided at the very beginning, I was not going to cry or say WHY ME. The nurse at the Fam Dr office reminded me that God wouldn't throw anything at me, unless he knew I could handle it. So I sure hope He knows a lot more than I do if He continues to throw stuff at me! ( Should I have said SHE?) thanks for listening
janelle