nomoreALS
New member
- Joined
- Nov 7, 2012
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 10/2012
- Country
- US
- State
- NY
- City
- Constable
Hello everyone,
I'm posting on the behalf of my father, who was recently diagnosed with ALS. His symptoms started about a year ago with loss of balance, then loss of coordination in his legs. He remained unconcerned by it, but I prompted him to get checked out. Our family physician ran basic blood tests and everything came back normal. The physician then recommended an arthritis specialist, but we declined this as it wasn't anything painful he was experiencing, it was more just an issue of getting his legs to function properly. We were then referred to a neurologist. My fathers symptoms at this point are: cramping in his calves, twitching in his calves, and balance issues.
As I'm sure most of you have experienced, the wait to see a neurologist is often a process. Several weeks later, we finally got in to see someone. After a physical examination, he thought ALS was likely. Feeling possibly overwhelmed by my fathers case, he referred us to more experienced neurologist in a hospital about an hour away. During the wait, my father had MRI's taken of his neck and upper back area. He also had an MRI taken of his brain. Everything appeared normal. Weeks later, we finally get to see the 2nd neuro. Lacking any emotion or empathy, he gave my father a physical examination, EMG, and NCV tests. At the end of the appointment the neuro believes this is likely ALS and orders a slew of other tests including blood and urine testing, and another MRI of his lower back. (this were never done)
At this time my father is upset with the diagnosis and feels that the latest doctor is simply trying to rid himself of my father instead of searching for something outside of ALS. We again began the search for another neurologist. After a month, we met with another neuro in an even bigger hospital several hours away. I sat through the physical exam, EMG, and NCV with my dad. At this time, his symptoms have progressed. His is slowly losing his ability to walk and the twitching has spread into his upper body and neck. The doctor gives a heartfelt talk to the family including my father, believing this is ALS.
Its been weeks since that appointment. We now need to begin selling the family business, as it depends on my father's ability to physically work. After weeks of depression and loss of motivation to do anything, my father is searching for answers anywhere. People have been approaching him with their stories and offering suggestions. One person has dropped off "electrolyzed water", which I think may be a quack theory, but my father mentally WANTS to believe in something...so he is. We've also made an appointment at the Mayo Clinic in Jacksonville, Florida at the end of this month. He wants to be sure this is ALS before he sells his 30 year old business and uproots the family for a more handicapped accessible home.
My question is...what can I possibly say to him? I'm trying to focus on the positive, but he mentions that "they haven't even looked for anything else, they all say ALS when they look at me" and I have no response for this. I don't want him to lose hope, I want him to remain in this and fight it even if it is ALS. What have others done at this time? Is there any kind of treatment outside of Riluzole? Experimental treatments or anything? Could this possibly be something else? EMG and NCV show abnormalities that are "suggestive of a motor neuron disease".
Thank you all in advance for taking the time to reading this and showing support.
I'm posting on the behalf of my father, who was recently diagnosed with ALS. His symptoms started about a year ago with loss of balance, then loss of coordination in his legs. He remained unconcerned by it, but I prompted him to get checked out. Our family physician ran basic blood tests and everything came back normal. The physician then recommended an arthritis specialist, but we declined this as it wasn't anything painful he was experiencing, it was more just an issue of getting his legs to function properly. We were then referred to a neurologist. My fathers symptoms at this point are: cramping in his calves, twitching in his calves, and balance issues.
As I'm sure most of you have experienced, the wait to see a neurologist is often a process. Several weeks later, we finally got in to see someone. After a physical examination, he thought ALS was likely. Feeling possibly overwhelmed by my fathers case, he referred us to more experienced neurologist in a hospital about an hour away. During the wait, my father had MRI's taken of his neck and upper back area. He also had an MRI taken of his brain. Everything appeared normal. Weeks later, we finally get to see the 2nd neuro. Lacking any emotion or empathy, he gave my father a physical examination, EMG, and NCV tests. At the end of the appointment the neuro believes this is likely ALS and orders a slew of other tests including blood and urine testing, and another MRI of his lower back. (this were never done)
At this time my father is upset with the diagnosis and feels that the latest doctor is simply trying to rid himself of my father instead of searching for something outside of ALS. We again began the search for another neurologist. After a month, we met with another neuro in an even bigger hospital several hours away. I sat through the physical exam, EMG, and NCV with my dad. At this time, his symptoms have progressed. His is slowly losing his ability to walk and the twitching has spread into his upper body and neck. The doctor gives a heartfelt talk to the family including my father, believing this is ALS.
Its been weeks since that appointment. We now need to begin selling the family business, as it depends on my father's ability to physically work. After weeks of depression and loss of motivation to do anything, my father is searching for answers anywhere. People have been approaching him with their stories and offering suggestions. One person has dropped off "electrolyzed water", which I think may be a quack theory, but my father mentally WANTS to believe in something...so he is. We've also made an appointment at the Mayo Clinic in Jacksonville, Florida at the end of this month. He wants to be sure this is ALS before he sells his 30 year old business and uproots the family for a more handicapped accessible home.
My question is...what can I possibly say to him? I'm trying to focus on the positive, but he mentions that "they haven't even looked for anything else, they all say ALS when they look at me" and I have no response for this. I don't want him to lose hope, I want him to remain in this and fight it even if it is ALS. What have others done at this time? Is there any kind of treatment outside of Riluzole? Experimental treatments or anything? Could this possibly be something else? EMG and NCV show abnormalities that are "suggestive of a motor neuron disease".
Thank you all in advance for taking the time to reading this and showing support.