mercyriver
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- Dec 27, 2010
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- Learn about ALS
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I have been lurking around this site for a while now, hesitant to post anything. I thought I would share about my husband and see what kind of feedback I can get.
My husband is 33 and was diagnosed with cancer in 2006. After surgery, chemo and then more surgery we thought we were free and clear and ready to steam full speed into life again.
In early 2008 my husband started having trouble while driving, he would get seemingly distracted and drift out of his lane or try to move over and not see the car next to him. Shortly after that started he started having trouble walking, he was tripping over his own feet and over tiny cracks in the sidewalk. He also complained that he was having a hard time typing. His typing had become slow and methodical and riddled with mistakes. He pretty much "types" for a living, so it was a great concern.
To add insult to injury he also started having trouble with his short term memory and finding the right word for things. And on top of all of that his personality did a 180.
I finally convinced him to call his doctor who sent him in for an emergency MRI, fearing a reoccurrence of his cancer to his brain. They found nothing.
He saw a neurologist who said it was stress and sent us home.
After pushing and insisting for several weeks, I convince him to see another neurologist. He tested for almost everything under the sun and came back with really nothing. In the end he insisted it was really marital problems and nothing more.
All the while the problems continued. My husband was also having sleeping problems, which continue to this day. As he is falling asleep (every single night) he twitches fairly violently and then falls off to sleep in a matter of minutes. He has gone through episodes of major insomnia and episodes of gasping and making odd noises in his sleep. Two sleep studies later he was told he has central sleep apnea. The doctor who did the sleep study insisted that he be monitored at home, the sleep neurologist he saw said he was fine and sent us on our way.
In the midst of all the sleep issues I finally convinced my husband to get some neuropsychological testing done. The test found he had a couple mild spots of trouble with some memory things and language things, nothing of concern accordingto the neuropsych. They also found that his left hand fine motor coordination was mildly impaired. At the time I wasn't sure what to make of it, but 18 months later I kick myself for not getting more answers on that one. They sent us away saying it was anxiety and depression and he should see someone. He refused.
So that is his history to 18 months ago. At that point I stopped looking for answers, it was frustrating him that I insisted something was wrong with him and it was damaging our relationship.
Over the past 18 months the memory and language trouble have stayed about the same, they are still there, but they are no worse. He has learned to concentrate more while driving, so his driving has improved.
His psychical body however has continued to change. He suffers from on and off muscle spasms and cramps. They occur mostly in his feet, calves and lower back, but this past week he had trouble with his neck and left shoulder cramping up.
He has lost muscle mass on the top and side of both shoulders over the past 18 months. So much so that you can see the top of his clavicle bones. My husband insists his shoulders have always been this thin, but I've been married to him 10 years, I know for a fact they haven't always been that thin. In addition he has lost muscle mass on both legs just above his knees. His calves are now significantly larger than his lower thighs.
In addition to this, his left shoulder sits much lower than right shoulder.
He tires very easily after doing any sort of physical activity, in fact, one of his most common phrases is "why am I so tiered?". The man who used to give me 30 minute back rubs now has to stop after 5 minutes because his arm muscles "cramp up".
He still trips often, mostly when walking up the stairs, but occasionally when just walking. Last night he fell down a short set of stairs carrying a vacuum, he wouldn't say anything about it other than that he was fine.
Over the past year he has started having excess saliva in his mouth, which makes it awkward to kiss him most of the time. As far as I know, he isn't aware of it.
He chokes often while drinking liquids, but thankfully not while eating food.
I know many of these things do sound like motor neuron disease, while I am sure many of them do not.
I wish it had occurred to me when they were doing all the neurological testing to insist on doing an EMG, but it did not and they never thought to do it either. My husband despises going to the doctor and I am not sure I will ever get him to go in again, unless something major happens.
So, I have gotten it all down in writing now, I know I left some things out and gave to much information about other things, but I am still hoping to get a little feedback. At the very least, I have most of the information down in one place now. Some day if I need to print it out to tell his story I can!
~Mercy River~
My husband is 33 and was diagnosed with cancer in 2006. After surgery, chemo and then more surgery we thought we were free and clear and ready to steam full speed into life again.
In early 2008 my husband started having trouble while driving, he would get seemingly distracted and drift out of his lane or try to move over and not see the car next to him. Shortly after that started he started having trouble walking, he was tripping over his own feet and over tiny cracks in the sidewalk. He also complained that he was having a hard time typing. His typing had become slow and methodical and riddled with mistakes. He pretty much "types" for a living, so it was a great concern.
To add insult to injury he also started having trouble with his short term memory and finding the right word for things. And on top of all of that his personality did a 180.
I finally convinced him to call his doctor who sent him in for an emergency MRI, fearing a reoccurrence of his cancer to his brain. They found nothing.
He saw a neurologist who said it was stress and sent us home.
After pushing and insisting for several weeks, I convince him to see another neurologist. He tested for almost everything under the sun and came back with really nothing. In the end he insisted it was really marital problems and nothing more.
All the while the problems continued. My husband was also having sleeping problems, which continue to this day. As he is falling asleep (every single night) he twitches fairly violently and then falls off to sleep in a matter of minutes. He has gone through episodes of major insomnia and episodes of gasping and making odd noises in his sleep. Two sleep studies later he was told he has central sleep apnea. The doctor who did the sleep study insisted that he be monitored at home, the sleep neurologist he saw said he was fine and sent us on our way.
In the midst of all the sleep issues I finally convinced my husband to get some neuropsychological testing done. The test found he had a couple mild spots of trouble with some memory things and language things, nothing of concern accordingto the neuropsych. They also found that his left hand fine motor coordination was mildly impaired. At the time I wasn't sure what to make of it, but 18 months later I kick myself for not getting more answers on that one. They sent us away saying it was anxiety and depression and he should see someone. He refused.
So that is his history to 18 months ago. At that point I stopped looking for answers, it was frustrating him that I insisted something was wrong with him and it was damaging our relationship.
Over the past 18 months the memory and language trouble have stayed about the same, they are still there, but they are no worse. He has learned to concentrate more while driving, so his driving has improved.
His psychical body however has continued to change. He suffers from on and off muscle spasms and cramps. They occur mostly in his feet, calves and lower back, but this past week he had trouble with his neck and left shoulder cramping up.
He has lost muscle mass on the top and side of both shoulders over the past 18 months. So much so that you can see the top of his clavicle bones. My husband insists his shoulders have always been this thin, but I've been married to him 10 years, I know for a fact they haven't always been that thin. In addition he has lost muscle mass on both legs just above his knees. His calves are now significantly larger than his lower thighs.
In addition to this, his left shoulder sits much lower than right shoulder.
He tires very easily after doing any sort of physical activity, in fact, one of his most common phrases is "why am I so tiered?". The man who used to give me 30 minute back rubs now has to stop after 5 minutes because his arm muscles "cramp up".
He still trips often, mostly when walking up the stairs, but occasionally when just walking. Last night he fell down a short set of stairs carrying a vacuum, he wouldn't say anything about it other than that he was fine.
Over the past year he has started having excess saliva in his mouth, which makes it awkward to kiss him most of the time. As far as I know, he isn't aware of it.
He chokes often while drinking liquids, but thankfully not while eating food.
I know many of these things do sound like motor neuron disease, while I am sure many of them do not.
I wish it had occurred to me when they were doing all the neurological testing to insist on doing an EMG, but it did not and they never thought to do it either. My husband despises going to the doctor and I am not sure I will ever get him to go in again, unless something major happens.
So, I have gotten it all down in writing now, I know I left some things out and gave to much information about other things, but I am still hoping to get a little feedback. At the very least, I have most of the information down in one place now. Some day if I need to print it out to tell his story I can!
~Mercy River~