Hello my friends,
I am facing an extremely difficult decision. My symptoms started about 10 months ago and continue to progress. I have a spastic gait, muscle loss, loss of balance that has led to several falls, muscle cramping in my legs and ongoing fasciculations primarily in my legs but also in my torso and arms.
My first medical visit several months ago was with a general practice neurologist who referred me to a neurosurgeon to review my cervical MRI. The neurosurgeon diagnosed cervical spondylitic myelopathy between C4-C5 and C5-C6. He ultimately recommended surgery but could not attribute my symptoms to the myelopathy. My neurologist however believes it is possible that my symptoms are caused by my "slinky neck".
My neurologist also referred me to a NMD specialist neurologist at the Oregon Health Science University in Portland, OR. Over the course of two visits he did a battery of blood test to rule out mimics, reviewed my cervical MRI and did an extensive EMG of my leg, arm and back. He did not present me with any EMG test results but at the time of the EMG test mentioned there were some results that were not consistent with ALS. However, in a subsequent phone conversation he strongly recommended that I not get the surgery and that the myelopathy was not the cause of my symptoms.
My dilemma is that I have the recommendation of the first general neurologist and the neurosurgeon to proceed with surgery and an opposing recommendation not to get the surgery from the ALS specialist neurologist. I understand and accept the fact that ultimately any course of action is my decision and my responsibility. However, it sure would be helpful to have a consistent medical opinion. I have respectfully requested the doctors talk to each other but that does not seem to be in the cards.
I would be grateful for any insight from members of the group.
I am facing an extremely difficult decision. My symptoms started about 10 months ago and continue to progress. I have a spastic gait, muscle loss, loss of balance that has led to several falls, muscle cramping in my legs and ongoing fasciculations primarily in my legs but also in my torso and arms.
My first medical visit several months ago was with a general practice neurologist who referred me to a neurosurgeon to review my cervical MRI. The neurosurgeon diagnosed cervical spondylitic myelopathy between C4-C5 and C5-C6. He ultimately recommended surgery but could not attribute my symptoms to the myelopathy. My neurologist however believes it is possible that my symptoms are caused by my "slinky neck".
My neurologist also referred me to a NMD specialist neurologist at the Oregon Health Science University in Portland, OR. Over the course of two visits he did a battery of blood test to rule out mimics, reviewed my cervical MRI and did an extensive EMG of my leg, arm and back. He did not present me with any EMG test results but at the time of the EMG test mentioned there were some results that were not consistent with ALS. However, in a subsequent phone conversation he strongly recommended that I not get the surgery and that the myelopathy was not the cause of my symptoms.
My dilemma is that I have the recommendation of the first general neurologist and the neurosurgeon to proceed with surgery and an opposing recommendation not to get the surgery from the ALS specialist neurologist. I understand and accept the fact that ultimately any course of action is my decision and my responsibility. However, it sure would be helpful to have a consistent medical opinion. I have respectfully requested the doctors talk to each other but that does not seem to be in the cards.
I would be grateful for any insight from members of the group.