Missyfussit
New member
- Joined
- Aug 29, 2008
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- WA
- City
- Oak Harbor
Let me start by saying I have been reading here for a week or so and finally decided to post. My husband is 51. A few years ago he had pneumonia really bad, and a year later had it again. The pulmonologist pointed out to him recently that it is not normal to have pneumonia even once, let alone two times, at his age. Following the last case, he had a cough that lasted months and months. During that time, two years ago ,we began to notice he got out of breath easily upon exertion. He thought he was just out of shape, and I was worried about the shortness of breath thinking it was a possible heart issue. He was checked out and, aside from slightly high cholesteral, his heart was fine. This continued, apparently slowly getting worse without us realizing it, until about 6 months ago when he noticeable began to experience severe breathing problems all the time. He would get out of breath just walking across the room, and on some days, just pulling on his pants in the morning. One day he turned blue just sitting still. We finally got him to the Dr where they referred him to a pulmonologist for all kinds of tests. He had a CT scan, lots of breathing tests, MRI, and many others. His heart is fine.
The tests showed his lungs themselves were very healthy, as his oxygen level was usually around 96%. He was always very active and did a lot of sports when young and never smoked. They did a "sniff" test and it revealed diaphragmatic paralysis, bilateral, with slightly less on the right than the left. He had lost over 30% of his lung capacity, at that time, which was several months ago. They mentioned ALS as a possibility, as well as a few other things which they quickly said it was NOT... and we are currently waiting for the referral appt to the Neurologist at University of Washington.
In the months spent waiting for THE neurology appt, we have been shocked at how much worse things have gotten. All the doctors can say so far is, "hmmm... I don't know..." His breathing is so labored and short breaths, due to his upper muscles having to do most of the work. Now, at night, when he is asleep, I notice his legs and arms sort of twitching or jerking. His breathing so soo short that I can't match it with mine, if I try, without getting light-headed immediately. His legs, arms and hands sometimes tingle, and he says he notices he is much weaker in his hands than he was. He seems often off-balance, for example when we are on our boat, and he was always so sure-footed before. Now it's like he can't keep his balance. He now usually uses a VPAP machine at night, which they gave him to try even tough they knew he did not have sleep apnea. It helps his breathing some but overall doesn't seem to be stopping anything.
Last week he told me he feels like he has something stuck in his throat. It is worse this week and he is having trouble swallowing and says he feels like he is going to choke. He is still working but some days I have no idea how he can do it. He also has constant ringing in his ears now, on both sides, says it changes when he moves his head around. His muscles ache and his neck and shoulder muscles are sore and tense. I know he is scared..... and I know he isn't telling me everything, too. Trying not to scare me, probably, but it's too late... i am so worried and fearful. We both say now that, looking back, this may have been coming on for quite a while. His speech has been labored for a while, off and on, but lately it's just that his voice has little volume behind it, due to the paralyzed diaphragm.
How often does this happen, where the first symptom that may show up in possible ALS would be the breating problem? Anyone else have ringing in their ears? I mean, he has had aches and pains for a long time, EVERYWHERE but he attributed it to too much sports when young, car accident, working too hard, etc. It was just something he lived with. But this new stuff is pretty scarey.
I know you can't tell me what they will say his diagnosed is. I don't know if they will even be able to figure out it, and that scares me too. I feel so sorry for him, because just breathing is so hard for him, and now all these other things. I know there may be other possibilities, such as a tumor on the phrenic nerve but with all the other things he's saying is going on, i am really getting afraid. And I don't know what to do or say to help him or make him feel better.....
Thanks for listening and any words of wisdom you may have.
The tests showed his lungs themselves were very healthy, as his oxygen level was usually around 96%. He was always very active and did a lot of sports when young and never smoked. They did a "sniff" test and it revealed diaphragmatic paralysis, bilateral, with slightly less on the right than the left. He had lost over 30% of his lung capacity, at that time, which was several months ago. They mentioned ALS as a possibility, as well as a few other things which they quickly said it was NOT... and we are currently waiting for the referral appt to the Neurologist at University of Washington.
In the months spent waiting for THE neurology appt, we have been shocked at how much worse things have gotten. All the doctors can say so far is, "hmmm... I don't know..." His breathing is so labored and short breaths, due to his upper muscles having to do most of the work. Now, at night, when he is asleep, I notice his legs and arms sort of twitching or jerking. His breathing so soo short that I can't match it with mine, if I try, without getting light-headed immediately. His legs, arms and hands sometimes tingle, and he says he notices he is much weaker in his hands than he was. He seems often off-balance, for example when we are on our boat, and he was always so sure-footed before. Now it's like he can't keep his balance. He now usually uses a VPAP machine at night, which they gave him to try even tough they knew he did not have sleep apnea. It helps his breathing some but overall doesn't seem to be stopping anything.
Last week he told me he feels like he has something stuck in his throat. It is worse this week and he is having trouble swallowing and says he feels like he is going to choke. He is still working but some days I have no idea how he can do it. He also has constant ringing in his ears now, on both sides, says it changes when he moves his head around. His muscles ache and his neck and shoulder muscles are sore and tense. I know he is scared..... and I know he isn't telling me everything, too. Trying not to scare me, probably, but it's too late... i am so worried and fearful. We both say now that, looking back, this may have been coming on for quite a while. His speech has been labored for a while, off and on, but lately it's just that his voice has little volume behind it, due to the paralyzed diaphragm.
How often does this happen, where the first symptom that may show up in possible ALS would be the breating problem? Anyone else have ringing in their ears? I mean, he has had aches and pains for a long time, EVERYWHERE but he attributed it to too much sports when young, car accident, working too hard, etc. It was just something he lived with. But this new stuff is pretty scarey.
I know you can't tell me what they will say his diagnosed is. I don't know if they will even be able to figure out it, and that scares me too. I feel so sorry for him, because just breathing is so hard for him, and now all these other things. I know there may be other possibilities, such as a tumor on the phrenic nerve but with all the other things he's saying is going on, i am really getting afraid. And I don't know what to do or say to help him or make him feel better.....
Thanks for listening and any words of wisdom you may have.