bnest
New member
- Joined
- Jan 8, 2018
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 1/2018
- Country
- US
- State
- ID
- City
- Pocatello
Hello Everyone,
I hope this is in the correct forum. My dad was recently ( 1/4/18 ) diagnosed with ALS at University of Utah. My mother and I are most likely in denial, however, something just does not seem right from all of the research we have done. I would like to have some insight from those of you who have been through this to see if his symptoms and progression fit the diagnosis.
Up until October of 2017 he was fairly active and really noticed no symptoms. His main issue has been lower back pain which he has had for several years along with and ALIF lumbar fusion performed a few years ago with limited success.
In late September of 2017 my mom noticed a different look in his eyes, a glazed over or glare, almost as if he was drunk. He also complained about "brain fog" and trouble concentrating. This continues to date, however, it seems to have improved.
In early November of 2017 he had an issue in the swimming pool where he accidentally swallowed some water and nearly choked. From this point on he has complained of a sore throat which has resulted in difficulty speaking, and he has trouble swallowing mainly water. In addition breathing on his back was more difficult after the pool issue. He went to the local emergency care and was diagnosed with a sinus infection and placed on medication which did not help the issue. To this date he still has these issues and coughs up yellow mucus.
He went to different doctors who ordered several different blood tests and an MRI all of which were mostly normal, other than elevated Epstein-Barr Virus Antibodys and a reactive Lyme 41 kD (igG).
Toward the end of November he started to become week fairly rapidly in all areas of his body. He is weak in both legs and both arms. He noticed having trouble turning the key to start his truck, difficulty lifting things he had no problem with just a few weeks before, and even problems getting into his truck. In addition, he noticed muscle twitching in all of his limbs. He has also lost ~20lbs since this time, most likely due to loss of appetite.
All of these symptoms appeared very quickly (within 2-3 weeks) and have basically stabilized. In addition to the above he complains of frequent urination, metallic taste, insomnia, dry mouth, blurred vision, excessive sweating during activities, temperature sensitivity, loss of taste/smell, and loss of appetite. He says he feels like he is being poisoned.
We took him to the ER the week after Christmas where the local neuro suspected ALS and referred him to U of U where they agreed after a short exam. An EMG was performed which we were told supported the dx, however, no report was generated.
During the exam he was having trouble moving his eyes without moving his head, until the doc finally held his head still and he barely moved his eyes to look to the side. He did not react to rubbing the hammer on the bottom of his foot like most ALS patients do. He really didn't react at all.
U of U performed no additional tests such as lumbar puncture, blood, urine, etc. They basically just told us its ALS and come back in 6 weeks for a check up.
My issue with this whole thing is how fast and widespread the symptoms appeared. He basically got bullbar, limb and respiratory onset all at the same time to a fairly advanced stage all in about 2-3 weeks, and he has several other symptoms that ALS does not explain.
Has anyone experienced anything like this before?
Thank you for your time.
I hope this is in the correct forum. My dad was recently ( 1/4/18 ) diagnosed with ALS at University of Utah. My mother and I are most likely in denial, however, something just does not seem right from all of the research we have done. I would like to have some insight from those of you who have been through this to see if his symptoms and progression fit the diagnosis.
Up until October of 2017 he was fairly active and really noticed no symptoms. His main issue has been lower back pain which he has had for several years along with and ALIF lumbar fusion performed a few years ago with limited success.
In late September of 2017 my mom noticed a different look in his eyes, a glazed over or glare, almost as if he was drunk. He also complained about "brain fog" and trouble concentrating. This continues to date, however, it seems to have improved.
In early November of 2017 he had an issue in the swimming pool where he accidentally swallowed some water and nearly choked. From this point on he has complained of a sore throat which has resulted in difficulty speaking, and he has trouble swallowing mainly water. In addition breathing on his back was more difficult after the pool issue. He went to the local emergency care and was diagnosed with a sinus infection and placed on medication which did not help the issue. To this date he still has these issues and coughs up yellow mucus.
He went to different doctors who ordered several different blood tests and an MRI all of which were mostly normal, other than elevated Epstein-Barr Virus Antibodys and a reactive Lyme 41 kD (igG).
Toward the end of November he started to become week fairly rapidly in all areas of his body. He is weak in both legs and both arms. He noticed having trouble turning the key to start his truck, difficulty lifting things he had no problem with just a few weeks before, and even problems getting into his truck. In addition, he noticed muscle twitching in all of his limbs. He has also lost ~20lbs since this time, most likely due to loss of appetite.
All of these symptoms appeared very quickly (within 2-3 weeks) and have basically stabilized. In addition to the above he complains of frequent urination, metallic taste, insomnia, dry mouth, blurred vision, excessive sweating during activities, temperature sensitivity, loss of taste/smell, and loss of appetite. He says he feels like he is being poisoned.
We took him to the ER the week after Christmas where the local neuro suspected ALS and referred him to U of U where they agreed after a short exam. An EMG was performed which we were told supported the dx, however, no report was generated.
During the exam he was having trouble moving his eyes without moving his head, until the doc finally held his head still and he barely moved his eyes to look to the side. He did not react to rubbing the hammer on the bottom of his foot like most ALS patients do. He really didn't react at all.
U of U performed no additional tests such as lumbar puncture, blood, urine, etc. They basically just told us its ALS and come back in 6 weeks for a check up.
My issue with this whole thing is how fast and widespread the symptoms appeared. He basically got bullbar, limb and respiratory onset all at the same time to a fairly advanced stage all in about 2-3 weeks, and he has several other symptoms that ALS does not explain.
Has anyone experienced anything like this before?
Thank you for your time.