Jenny B
New member
- Joined
- Jun 9, 2022
- Messages
- 7
- Reason
- Loved one DX
- Diagnosis
- 06/2022
- Country
- US
- State
- VA
Hi all!
My husband has been struggling with swallowing problems for almost a year. Within the last few months, he has almost entirely lost the ability to speak (he can make noises but they no longer sound like words), and can no longer chew. He has atrophy and tremor of the tongue, hyperactive reflexes, and widespread fasciculations. He is 6'4" and has went from 210 lbs. to 162 lbs. in about 6 months. He has weakness in both arms and hands. He is getting his only nutrition from Boost shakes (4-5 bottles per day) and pudding. He has been in denial about the progression of symptoms, and seems to be experiencing some dementia as well. He was recently seen by a neurologist for the first time (after I talked to his PCP and we begged my husband to go get checked out) and the neurologist felt that it looked like motor neuron disease and ordered blood work, EMG and MRI of the brain with contrast. The blood work came back normal - no autoimmune disorders. On the EMG report, the doctor's diagnosis was probable widespread motor neuronopathy. His MRI is next week and his follow-up appointment with the neurologist to review the test results is at the end of the month.
I'm concerned he won't make it that long. He lost 10 pounds in the last week. He refuses to see his PCP in the meantime - I worry he is dehydrated because he has lost the ability to swallow water. He can get soda down but will only take some sips here and there. He chokes on everything, although he can get most of his Boost down. He won't see his PCP or get help with his symptoms because he thinks all of his problems are from seasonal allergies. As a family, we are respecting his wishes (whether they are conscious or subconscious) to call these allergy problems. But, I'm worried I'm watching him die and it just feels crazy to sit here and do nothing.
Has anyone had any experience with anything like this? I'd love any feedback or support and really appreciate these forums. This is my first time posting, but I have learned a lot from reading from others' experiences. Thank you so much.
My husband has been struggling with swallowing problems for almost a year. Within the last few months, he has almost entirely lost the ability to speak (he can make noises but they no longer sound like words), and can no longer chew. He has atrophy and tremor of the tongue, hyperactive reflexes, and widespread fasciculations. He is 6'4" and has went from 210 lbs. to 162 lbs. in about 6 months. He has weakness in both arms and hands. He is getting his only nutrition from Boost shakes (4-5 bottles per day) and pudding. He has been in denial about the progression of symptoms, and seems to be experiencing some dementia as well. He was recently seen by a neurologist for the first time (after I talked to his PCP and we begged my husband to go get checked out) and the neurologist felt that it looked like motor neuron disease and ordered blood work, EMG and MRI of the brain with contrast. The blood work came back normal - no autoimmune disorders. On the EMG report, the doctor's diagnosis was probable widespread motor neuronopathy. His MRI is next week and his follow-up appointment with the neurologist to review the test results is at the end of the month.
I'm concerned he won't make it that long. He lost 10 pounds in the last week. He refuses to see his PCP in the meantime - I worry he is dehydrated because he has lost the ability to swallow water. He can get soda down but will only take some sips here and there. He chokes on everything, although he can get most of his Boost down. He won't see his PCP or get help with his symptoms because he thinks all of his problems are from seasonal allergies. As a family, we are respecting his wishes (whether they are conscious or subconscious) to call these allergy problems. But, I'm worried I'm watching him die and it just feels crazy to sit here and do nothing.
Has anyone had any experience with anything like this? I'd love any feedback or support and really appreciate these forums. This is my first time posting, but I have learned a lot from reading from others' experiences. Thank you so much.