daddys_little_girl
New member
- Joined
- Jul 26, 2012
- Messages
- 7
- Reason
- Lost a loved one
- Diagnosis
- 06/2012
- Country
- US
- State
- WV
- City
- Charleston
Hello everyone,
I have spent a few days just reading various threads on this website and am amazed at the wealth of information and support available. Having resorted to the internet after my Dad's diagnosis of MND/ALS a month ago, I am relieved to find a place where I can get straight answers from those who are knowledgeable. I do have questions...lots of questions.
My Dad is 62. He started having muscle twitching in his left hand almost two years ago. Because of his insurance situation (and some bull-headed denial) he waited to be seen by a neurologist until a month ago. His little finger and the one next to it have drawn up. He has lost almost all of his muscles in the left arm and it just hangs by his side. His shoulder is slumped. He has visible, constant fascillations in his left arm. The neurologist diagnosed him and sent him to an ALS specialist. After MRI's and nerve conduction studies (from both Drs) and a muscle biopsy from the specialist, our worst fears were confirmed. The specialist has also noticed fascillations in his right leg. The specialist feels that it is a rare strain of ALS...bibroncial...and that the disease is in its early stages.
Does anyone out there have this same strain? Internet research has provided very little information. I did read that this strain stays limited to the upper body for a while before progressing to the lower limbs. Would the twitching indicate a more rapid/aggressive disease?
Also, because my Dad's muscles twitched in his left arm for over a year before he lost his strength, can I assume that he will have relatively good right arm function for a while longer?
My Dad has had an episode of shortness of breath while performing a relatively easy task...something that he was fully capable of doing a few weeks ago. He is a very active man, but is not in the best shape. (if that makes sense)
My Dad is still in the denial stage. When we speak I listen to him and try to keep the conversation light and positive, letting him discuss his prognosis on his own terms. We do this by phone ( I live out of state) He has been receiving information from various people about stem cell shots, herbal medicine options, etc. I want to support him in any way that I can, but wonder if I should be more proactive. I could use some advice on this as well.
Thank you and God Bless you all!
I have spent a few days just reading various threads on this website and am amazed at the wealth of information and support available. Having resorted to the internet after my Dad's diagnosis of MND/ALS a month ago, I am relieved to find a place where I can get straight answers from those who are knowledgeable. I do have questions...lots of questions.
My Dad is 62. He started having muscle twitching in his left hand almost two years ago. Because of his insurance situation (and some bull-headed denial) he waited to be seen by a neurologist until a month ago. His little finger and the one next to it have drawn up. He has lost almost all of his muscles in the left arm and it just hangs by his side. His shoulder is slumped. He has visible, constant fascillations in his left arm. The neurologist diagnosed him and sent him to an ALS specialist. After MRI's and nerve conduction studies (from both Drs) and a muscle biopsy from the specialist, our worst fears were confirmed. The specialist has also noticed fascillations in his right leg. The specialist feels that it is a rare strain of ALS...bibroncial...and that the disease is in its early stages.
Does anyone out there have this same strain? Internet research has provided very little information. I did read that this strain stays limited to the upper body for a while before progressing to the lower limbs. Would the twitching indicate a more rapid/aggressive disease?
Also, because my Dad's muscles twitched in his left arm for over a year before he lost his strength, can I assume that he will have relatively good right arm function for a while longer?
My Dad has had an episode of shortness of breath while performing a relatively easy task...something that he was fully capable of doing a few weeks ago. He is a very active man, but is not in the best shape. (if that makes sense)
My Dad is still in the denial stage. When we speak I listen to him and try to keep the conversation light and positive, letting him discuss his prognosis on his own terms. We do this by phone ( I live out of state) He has been receiving information from various people about stem cell shots, herbal medicine options, etc. I want to support him in any way that I can, but wonder if I should be more proactive. I could use some advice on this as well.
Thank you and God Bless you all!