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Missyfussit

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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.
 

laurel

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What a distressing situation. Is there anyway that you can get the appointment at the U of Washington appt. bumped up by explaining how much your husband is deteriorating? I would make a huge effort to do that and tell them you will take any short notice cancellation that comes up. His symptoms are baffling in that they are pulmonary in origin and the routine pulmonary pathologies have been ruled out. Has anyone attempted any sort of treatment? What about something for his aches and pains? Has any doctor addressed that? Often times you read that physicians will give corticosteroids as a trial in some of these mystery illnesses, and if there is response it helps them narrow down what is going on i.e. a motor neuron disease versus some rare vasculitis. I hope others will jump in with experience and advice as I do know how dreadful it is to watch your husband getting worse day by day with no answers. Be strong and be assertive to get that appointment moved up. He needs some comprehensive testing done asap by a neurologist. Enlist your family doctor in seeking an urgent appointment.
Laurel
 

CindyM

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Hi Missy- I am sorry to hear about your husband. I hope we will be able to help. Hopefully you will be able to move up the appointment. Maybe you should try calling every day to see if they have a cancellation?

Meanwhile, tell Hubby to sleep on a slight incline. You can prop him up with pillows or raise the head of the bed on blocks. Some PALS (people living with ALS) find that sleeping in a recliner helps, or sleeping only on one side, but he will need to experiment. (Those two positions make my breathing worse, for instance.)

As he gets dizzy, he may hear ringing in the ears. Or he may just be nauseous and not eating well, thus causing low blood sugar. Or he could have ringing in the ears. :smile:

He might find that breath stacking helps. We have discussed this on several threads, which you can find by doing a search on this site using the words "breath stacking." Basically, you take in a breath and hold it, and without letting it out, take in another. Hold them both and take in a third and hold them all for 5 - 7 seconds. One thing that works for me is to try really hard to force all the air out of my lungs when my 5 seconds are up. For me, if I do this a couple of times, my breathing slows back down.

The fast breathing is due to the body's way of trying to correct for too much carbon dioxide. My pulmonary doc explained that our bodies need a certain ratio of CO and CO2, and if the ratio is out of whack the brain triggers our lungs to take in quick breaths.

Finally, tell him not to fret. I feel silly saying this, since when my docs first starting talking to me about ALS I prepared so well for needing a wheelchair, or help feeding myself. But I never prepared for not being able to breath properly. So when the breathing issues kicked in I panicked. But I still don't have a DX, so I have opened my mind to the possibility that I might have some other, less debilitating, condition. So keep hoping for the best. At the very least, it is important to help us remain calm, as anxiety is the last thing anyone with breathing issues needs!

I hope this helps. Thank you for joining us! Cindy
 

patricia1

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:?:Have they ruled out Pulmonary hypertension
 

Missyfussit

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reply

Thank you so much for replying. I never have time to get on the computer until night, lately.

They have not said they ruled out pulmonary hypertension, however they have determined that his lungs themselves are fine. The deal is, his diaphragm isn't moving the air because it's not moving up and down. Lately, also, apparently the muscle is sort of "wasting" because it seems his internal organs are shifting upward as his lungs become less functional. That is uncomfortable for him, a feeling of fullness so he can't eat much at a time without being uncomfortable, plus add to that the problems swallowing and tendency to choke, well it's not real fun. He does have better days than others, but his breathing is always bad regardless of how he feels otherwise.

We tried to get him in to UW earlier - they wanted to set his appointment for January, back when we called in July! My husband told her, "this is an emergency - I can't breath!" The lady told him that if it was an emergency he would be flying there in a helicopter.... I thought that was kind of rude. Anyway, he talked them into the October appt and he is on a short call waiting list, but we have literally waited months, now.

There are other symptoms I have to list but right now I just have to get some sleep....
 

CindyM

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I am so sorry to hear this, Missy. It sounds scary, to boot! BethU has some experience with respiratory failure- maybe she can write of her symptoms of that condition just so you will know what to look for. Being forewarned and knowing when or if it is time to call 911 takes the worry off, for me, at least.
 

BethU

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Hi, Missy ... I am so sorry your husband is going through this ... and even more sorry that his symptoms are not being treated as needing immediate attention. This is terrible that you have had to wait this long.

I had respiratory failure last December, and ended up in an ambulance to the hospital, and then entubated for several days. It was a three-week stay with respiratory therapy every four hours. Here's what led up to it.

I'm always a little short of breath, but I noticed one day that it was getting harder to breathe than normal. I felt like I simply couldn't get enough breath into my lungs. It is a very panicky feeling, as I'm sure your husband knows. It got worse and worse after dinner ... I could not get air into my lungs ... and we called 911. I remember the paramedics arriving, but don't remember anything else till I woke up 3 days later. Apparently I was awake when I got to the hospital, but then conked out and stopped breathing, and they cut me out of my clothes, etc.

After getting out of the hospital, on a follow-up with the pulmonologist, my lung function was pretty good, but I am still using an inhaler four times a day.

I had pneumonia in 1981, and this was a different feeling. With the pneumonia, it felt like my chest was filled with concrete and the lungs were not moving at all. I could only breathe in and out with very shallow breaths, but there wasn't that panicky feeling of not being able to get any air.

My own feelings are that you can't mess around with your heart or your lungs. If your husband feels he can't breathe, that's an emergency!

As to whether ALS presents with shortness of breath: That could be possible in my own experience. My very first problem was my legs buckling under me on a treadmill, along with sudden extreme shortness of breath and dizziness. I've never really connected that to the ALS, but that event has never been explained. That was December, 2005. While the doctors were trying to figure out what caused that, they performed a routine angiogram, during which they poked a hole in an artery and had to rush me to open heart surgery, and when I woke up from THAT, which was March, 2006, I had slurred speech, etc. and other bulbar symptoms. So the collapse on the treadmill and the shortness of breath may have been the beginning of this.

Missy, when is your husband's appointment? I hope he doesn't get any worse before his appointment, but if he feels that he can't breathe, that's a medical emergency. He just shouldn't have to go through this waiting ... if you need to go to the ER, call an ambulance, because that way they will see him right away and he won't have to sit in the waiting room for hours.

Sometimes I just want to slap doctors and say, "Don't you realize your patients are real people who are suffering?"

Hang in there ... sending prayers for you both,
BethU
 

Missyfussit

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Thanks so much

Thank you so much for replying, all of you. BethU, wow you have really had a hard time of it. How long ago was that? My husband's breathing seems to be similar to the feeling you describe, however he can't use an inhaler at ALL. They tried it to see if it helped and it (the medication - albuterol) really made things worse, for some reason. Sort of proving that the problem wasn't inside his lungs (my opinion.) He is really sensitive to any medication, as well, and has long been that way. Aside from Advil, he isn't taking anything at the moment.

We have made one trip to the ER, it was the beginning of July. It resulted in an overnight stay and all kinds of pulmonary tests, EKGs and a stress test on his heart. Aside from being short of breath, he came out ok on all of those. No one had any clues, at our hospital here. I am always afraid he will stop breathing at night, or that he will choke. I have my phone by my pillow and it's like I am "aware" of his breathing or if he is up and down all night. Sleeping with his head elevated helps sometimes but not always. Sometimes he will sleep a bit in the recliner.

He goes to bed a couple of hours before I do and I listen from here in the living room, to his breathing and the sound of the vPAP machine. It's kind of stressful. Tonite he is having problems and seems to have a bit of a cough. I hope and pray he doesn't get a cold.... it would be life-threatening. He also gets real dizzy when he coughs, and coughing today was an issue. His appointment is October 20. Still a couple of weeks, but if we have an emergency with this cough on top of other things, we will have to do another ER trip.

Another thing they have checked him for is asbestosis. He is an automotive tech and for many years had been exposed to brake dust along with other chemicals that are just NASTY. They said he does not have asbestos issues, though, the chest x-rays and other tests don't show any sign of it. We have always wondered about all the exposure to chemicals though, for all the years of his work. Maybe that's not what this is... but it sure can't help things.

You know, here is something we think is weird. For the longest time (years) he thought he was depressed. He always said he felt like he had a "hole" inside himself, an emptiness or a dead feeling. He would knot his fist and show me where the feeling was, and it was about diaphragm level. As I said, he would say he had no reason to feel that way, empty and dead in the middle, or depressed. He tried anti-depressants which helped his mood in general but did nothing for that feeling. Now, with all this going on, we have started to believe that the feeling was actually a PHYSICAL symptom, which he was interpreting as mental or emotional. You know, your body will do things and it is up to your mind to interpret. We think what he was feeling was the beginning of the loss of the function of his phrenic nerve. This can't be proven, probably, but it made sense that it could be.....

Wow, this is a neat forum. I sure appreciate your feedback, you guys are cool....
 

BethU

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Missy, you said We think what he was feeling was the beginning of the loss of the function of his phrenic nerve. This can't be proven, probably, but it made sense that it could be.....

That makes sense to me, too. I think our bodies and our brains know much, much more than we are aware of.

Sending good thoughts for you both,
BethU
 

patricia1

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Has your husband had an echocardiogram?
 

suzannj

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Hi Missy,
I just read through your posts and my heart goes out to you and your husband. I am currently officially undiagnosed, but the latest opinion is Multifocal Motor Neuropathy....I just didn't want you to think that I'm replying to you as a PAL or CAL.

In any event, I too have had pneumonia twice over the past 4 years, and I'm only 37. No one ever told me that that was truly out of the ordinary, but I also have (mild) asthma, so maybe that's why no eyebrows were raised? In the end I can really, truly empathize with the horrid feeling of not being able to get enough air, so I feel so incredibly bad for your husband. My issues are indeed direct-lung related, so I don't have any medical insite / help to offer, but something else you said did strike me so I thought I'd throw it out there just in case it might help.

When my baby was born, I was terrified that he would die of SIDS, or that he would stop breathing and I wouldn't know. While Googling "How to prevent sudden infant death" I came across a God-send of a product called the Angel Care Movement Sensor and Monitor. It's your basic baby monitor with a HUGE side benefit: A sensor pad that is placed under the crib mattress that's probably the size of your average laptop computer, and it's EXTREMELY sensitive! It picks up even the teeny-tiniest movement....like a baby taking a breath, and/or making the smallest movement imaginable. Every single time my son would take a breath the monitor would make a little "tick" sound. Very subtle, but if for any reason it did not pick up that breath for 10 (maybe it was 15?) SECONDS.....an alarm would sound. I have to say, it was THE ONLY thing that allowed me to sleep at all. People woudl say, "Doesn't that ticking drive you crazy?" My answer: NOPE! It lulled me to sleep because I knew for sure as long as I heard that tick, my baby was still breathing. I think those monitors should be as mandatory as car seats!

Anyway, obviously your husband is larger than an infant, but maybe you could place the monitor under the upper portion of his body and then you can really get some rest. If you hear the tick, all is well and if something goes wrong even an elephant would be awakened by that alarm! I just remembered, there was also an option to silence the ticking, and just watch lights move instead, but I preferred to "hear" every breath he took.

Just an idea. You NEED to sleep......sleep deprivation is an actual form of torture. You can't even think straight without some quality sleep, and you need to be strong now. I hope that might help even a little bit.

Take care, I hope you (and your husband) are having a restful night -
Suzann
 

Missyfussit

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Thanks for the idea - I'll have to look and see if I can find one of those. Today was a rough day. I don't know if he's caught a bit of a cold or what, but he is coughing a LOT. Yet, he says, he doesn't feel like it's a cold. Breathing is very bad, and when he coughs he gets dizzy because of course there is no lung to cough with, so can't catch his breath. I am ready to take him to the hospital, and the thing is, he does know when he has to go and tells me.

Another thing he told me today is he has noticed he is drooling, like he will be at work and busy and then put his hand up to his mouth and realize there is drool coming out the side of his mouth. My heart sank when he told me that, an I think he also knows this is pretty significant stuff, along with his difficulty swallowing and lung issues, and a host of other things.

We only have a little over a week to go, to get to UW, but what I think will happen is they will do a consultation and then set up him for some testing. I don't think there is a snowball's chance in h--- we will have a diagnosis at that appointment. So I have been trying to sort of prepare him for that, as he has been saying " what if they can't tell us anything when we get there?" I've just been saying, "I'm sure they will want a few more tests. IF they think it looks like ALS, I've read there isn't a test for that - they have to basically eliminate everything else, before they can say. I don't think we should expect them to look at your other tests and have an answer, but should go in there expecting more tests and a little longer wait."

On the echocardiogram, I'm not sure. He's had tons of heart tests, though. When we went to the ER he was having pressure in his chest, along with his breathing issues, and they thought for sure he was having a heart attack. Was good for us to see that wasn't the problem, reassurance we needed at least on that one. We think his diaphragm has weakened and they have said his internal organs are shifting upward, which seems to cause his stomach to press up on his esophogas, which causes pain..... some days worse than others. We have also noticed that his tummy seems bigger and it's like a pregnant woman, carrying a baby real high. We don't know why except, if his diaphragm is paralyzed and can't move, then the muscle is weakening, which they say means it can't hold his organs down where they should be. I don't know if that makes sense or not but I feel so sorry for him.... :(
 
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