Mihail
New member
- Joined
- Feb 11, 2016
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 12/2015
- Country
- US
- State
- fla
- City
- st petersburg
Greetings to all and before I go into our situation I want to express my good fortune and gratitude for finding such a valuable resource as this online forum.
My 82 year old uncle fell ill and was hospitalized due to a hypofunctioning esophagus. 15 years ago he had ruptured his esophagus due to vomiting caused by an inflamed appendix. The ruptured esophagus was then stitched up using a Nissen fundoplasty, and has had no problems with it since.
When he fell ill recently (mid November 2015), he had been dehydrated because he never drank enough fluids and had not eaten in a few days after getting sick from a flu shot.
Long story short, he was diagnosed with ALS, then developed pneumonia and was intubated and then placed on a ventilator with a tracheotomy. . Were fortunate to have a couple of really good doctors in our family and they were surprised because he developed ALS so late in life, and it apparently struck his throat and esophagus first, instead of his extremities which seem unaffected. Were told that the doctors observed twitching in his tongue, however I care for him daily (he is in a local respiratory facility) and have never noticed any such twitching.
His weaning was going well for a while but he has been stumbling lately and is now considered unweanable and we are looking at the next.
The reason he is considered unweanable is due to the alleged underlying cause of his respiratory weakness being ALS.
However, he has other underlying problems, and were puzzled by the doctors insistence on an ALS diagnosis. After much wrangling, the doctors consented to perform an electromyography which did not confirm the diagnosis, but the doctors are going with it anyway. They told me that the electromyography was not conclusive because my uncle was not conscious enough to cooperate.
This was further confusing as other doctors have told me that an electromyography is basically an electroconductivity test that doesnt require the patient to participate.
As you can tell there are a few complex issues at play here, but my question for this forum is regarding the actual ALS diagnosis. It seems inconclusive but the doctoras are very insistent that it absolutely is ALS.
Is it possible to develop ALS this late in life and to have it not affect his extremities first and not be detectable through an electromyography? I dont want to be in denial, Im aware that he may not survive much longer regardless of ALS but I just want to know the truth of the matter.
Thank you for considering my question,
Mihailo
My 82 year old uncle fell ill and was hospitalized due to a hypofunctioning esophagus. 15 years ago he had ruptured his esophagus due to vomiting caused by an inflamed appendix. The ruptured esophagus was then stitched up using a Nissen fundoplasty, and has had no problems with it since.
When he fell ill recently (mid November 2015), he had been dehydrated because he never drank enough fluids and had not eaten in a few days after getting sick from a flu shot.
Long story short, he was diagnosed with ALS, then developed pneumonia and was intubated and then placed on a ventilator with a tracheotomy. . Were fortunate to have a couple of really good doctors in our family and they were surprised because he developed ALS so late in life, and it apparently struck his throat and esophagus first, instead of his extremities which seem unaffected. Were told that the doctors observed twitching in his tongue, however I care for him daily (he is in a local respiratory facility) and have never noticed any such twitching.
His weaning was going well for a while but he has been stumbling lately and is now considered unweanable and we are looking at the next.
The reason he is considered unweanable is due to the alleged underlying cause of his respiratory weakness being ALS.
However, he has other underlying problems, and were puzzled by the doctors insistence on an ALS diagnosis. After much wrangling, the doctors consented to perform an electromyography which did not confirm the diagnosis, but the doctors are going with it anyway. They told me that the electromyography was not conclusive because my uncle was not conscious enough to cooperate.
This was further confusing as other doctors have told me that an electromyography is basically an electroconductivity test that doesnt require the patient to participate.
As you can tell there are a few complex issues at play here, but my question for this forum is regarding the actual ALS diagnosis. It seems inconclusive but the doctoras are very insistent that it absolutely is ALS.
Is it possible to develop ALS this late in life and to have it not affect his extremities first and not be detectable through an electromyography? I dont want to be in denial, Im aware that he may not survive much longer regardless of ALS but I just want to know the truth of the matter.
Thank you for considering my question,
Mihailo