Wjameslane
New member
- Joined
- Sep 7, 2014
- Messages
- 8
- Reason
- Lost a loved one
- Diagnosis
- 06/2011
- Country
- US
- State
- Arizona
- City
- Scottsdale
Do you have Bulbar/ALS or Cervical Spondlyotic Myelopathy?
Dear Bulbar ALS patients, friends and family. The most helpful thing you can do is purchase a saliva pump machine like dentists have for under $100 for the person suffering from bulbar ALS. My mom used her saliva machine very frequently throughout the day while she had a feeding tube in later stages.
Secondly a very important thing to consider during early neurological symptoms for Bulbar & non-bulbar ALS is the cause may be cervical spondlyotic myelopathy. EVEN bulbar symptoms can be related to CSM if there is spinal stenosis at the C1 and C2 region. The universal medical misconception is that the cranial nerves alone which are in the brain control the tongue, however the hypoglossal nerve controls the tongue and is connected to the cervical spine at the C1 and C2 location. Explain this fact to your neurologist and ask them why the narrowing of the spine at c1 and c2 can't cause tongue twitches and why it's not a spinal issue and probably ALS even though arm and leg twitching can be non-ALS related with cervical spondlyotic myelopathy. This doesn't make sense and I think ALS is a misdiagnosis which surgery could help during early symptoms by opening the nerve pathways at C1 and C2 for bulbar and in the area of the spine that controls where your neurological symptoms are occuring. Once too many motor neurons are destroyed it's too late...good luck and god bless your strength.
Dear Bulbar ALS patients, friends and family. The most helpful thing you can do is purchase a saliva pump machine like dentists have for under $100 for the person suffering from bulbar ALS. My mom used her saliva machine very frequently throughout the day while she had a feeding tube in later stages.
Secondly a very important thing to consider during early neurological symptoms for Bulbar & non-bulbar ALS is the cause may be cervical spondlyotic myelopathy. EVEN bulbar symptoms can be related to CSM if there is spinal stenosis at the C1 and C2 region. The universal medical misconception is that the cranial nerves alone which are in the brain control the tongue, however the hypoglossal nerve controls the tongue and is connected to the cervical spine at the C1 and C2 location. Explain this fact to your neurologist and ask them why the narrowing of the spine at c1 and c2 can't cause tongue twitches and why it's not a spinal issue and probably ALS even though arm and leg twitching can be non-ALS related with cervical spondlyotic myelopathy. This doesn't make sense and I think ALS is a misdiagnosis which surgery could help during early symptoms by opening the nerve pathways at C1 and C2 for bulbar and in the area of the spine that controls where your neurological symptoms are occuring. Once too many motor neurons are destroyed it's too late...good luck and god bless your strength.