jstoner
New member
- Joined
- Sep 30, 2014
- Messages
- 2
- Reason
- Loved one DX
- Country
- US
- State
- Maryland
- City
- Churchville
So I have a family member (my father) who has been undergoing various evaluations over the years for deteriorating health. In the past my Dad has had throat cancer and was treated with radiation so many of the issues that he has had over the years since then, has been with swallowing and eating. It has gotten so bad that he was aspirating and prone to pneumonia often. Over the last year, he has had muscle weakness and muscle wasting. He used to be about 240lbs and weights just over 157lbs. He basically looks like a skeleton covered in skin. He has no control over his tongue. He also experiences muscle spasms in his upper body. He has vast ranges of emotional behavior (crying, laughing for no reason) All of these years, different neurologists have told him that his issues were caused by radiation damage. Some of which I believe. My dad has always been pretty active and he still can walk and use his arms/hands. He is now on a feeding tube as he cannot control his swallowing and he is very difficult to understand when he speaks. I think that by his being so active, maybe its hard to decipher what this is since the rest of his body has not exactly broken down yet (if that is even a good term to use). His muscles do look like they are in the process of atrophy. I do know what that looks like because my husband's brother is a quadriplegic.
I had done some research on ALS and other motor neuron disorders and decided to reach out the local chapter of ALS to seek out a doctor who specializes in these diseases. I found one and one that happens to be one of the best in the country for ALS. I was able to get him to see this doctor. After a physical examination he determined that my father is ALS symptomatic. He said my father had many of the signs of MNDs.
Now prior to this visit with this specialist, my parents had gone to see another neurologist that was recommended by an ENT. This doctor decides to run test after test after test. He determines that his tests rule out MNDs. He thinks it could be that radiation damaged his brain stem and needs to run blood tests to confirm that. Yet the doctor he met with that is the ALS expert believes he is ALS symptomatic even without tests. My father is in his 70s and did not believe he wanted to put him through spinal taps, etc.
So can these tests that are supposed to give signs of whether someone has ALS or any MND or can you pass all of these tests and yet have MN? To be honest, my tendency is to go with the ALS specialist. It would answer a lot of questions of what is happening to my Dad. I do think he has a combination of radiation damage and maybe some form of MND.
I did not come to this forum to diagnose my Dad. I am not delusional but I want to find out if others have had these same experiences where you have two doctors with two totally opposite opinions. Can the nerve testing be accurate enough to rule out ALS?
I had done some research on ALS and other motor neuron disorders and decided to reach out the local chapter of ALS to seek out a doctor who specializes in these diseases. I found one and one that happens to be one of the best in the country for ALS. I was able to get him to see this doctor. After a physical examination he determined that my father is ALS symptomatic. He said my father had many of the signs of MNDs.
Now prior to this visit with this specialist, my parents had gone to see another neurologist that was recommended by an ENT. This doctor decides to run test after test after test. He determines that his tests rule out MNDs. He thinks it could be that radiation damaged his brain stem and needs to run blood tests to confirm that. Yet the doctor he met with that is the ALS expert believes he is ALS symptomatic even without tests. My father is in his 70s and did not believe he wanted to put him through spinal taps, etc.
So can these tests that are supposed to give signs of whether someone has ALS or any MND or can you pass all of these tests and yet have MN? To be honest, my tendency is to go with the ALS specialist. It would answer a lot of questions of what is happening to my Dad. I do think he has a combination of radiation damage and maybe some form of MND.
I did not come to this forum to diagnose my Dad. I am not delusional but I want to find out if others have had these same experiences where you have two doctors with two totally opposite opinions. Can the nerve testing be accurate enough to rule out ALS?
