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Gusflower

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Learn about ALS
Country
SWE
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Skåne
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Helsingborg
I read somewhere that about 7% of the patients that get the ALS diagnosis get breathing problems first before they get loss of joints problems.

Well I might be one of those people. Suddenly I've found myself to have trouble staying awake and a mild headache also it hurts in my heart chest when I move and try to breath at the same time.

In my throat the right part feels so stiff. Like it's loose parts. I can't say this is something new for me. It has grown to this point since many years.
 
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Have you seen a doctor yet and if not, why not? Sudden problems with your breathing are not the kind of thing you want to fool around with.

You say the problem with your throat has been going on for many years. What did your doctor say about the throat problems when you mentioned them to him in the past?
 
So did you have a question about this?

AL.
 
I just want to know. Would I start notice this in my breathing, no other symptoms than muscle spasms.
 
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Have you seen a doctor yet and if not, why not? Sudden problems with your breathing are not the kind of thing you want to fool around with.

You say the problem with your throat has been going on for many years. What did your doctor say about the throat problems when you mentioned them to him in the past?

Hello thanks for your answer, I have seen a doctor. They have listened to my lungs and said everything is fine. I have never done any tests for my inhaling/breathing though.
 
hi gus. . The first thing is to mention anxiety . . . Breathing trouble is notoriously a symptom of anxiety . . So just consider that as a possibility . . Secondly you said you have difficulty staying awake. . Trust me breathing trouble in als or any neuromuscular condition will mean that you just dont sleep until its treated . . Trust me i had 5 months of not sleeping due to breathing problems. . I would love to be able to fall asleep like you . . . In answer to your question about respiratory onset as first symptom ì think and have heard its around 3% of Mnd als . . Someone more knowledable than me (tryfogey?) can prob confirm but basically not very likely . . Good luck . . Alex ps. . I agree with tryfogey . . It may not be neurological but breathin is not to be taken lightly . . Pester your doc
 
Thanks for the reply Alex. What do you mean you didn't sleep for five months? You were worried? In my case it is more like dozing off. Happens more often when I haven t slept enough in the night or if it is dark outside when taking the train home. I have a neurological appointment on the 31 of Jan. Also I have trouble with food getting stuck when I swallow. To little space in my throat. Always seems that my food and air go through right side of the throat. Can it be that the right side in my throat has been damaged?
 
hi again . . What i meant by not sleeping for 5 months was i have some breathing muscle weakness troubles . -And due to this it meant that when i would fall asleep and my body would relax the weakened diaphram and other breathin muscles are not strong enough to function in a totally relaxed body . . Thus resulting in waking up every two or three minutes due to lack of oxygen . . Meaning i would never get to deep sleep . . No matter how tired . . What you describ is the the opposite . . Also i dont have any pain breathing . . Its just shortness of breath . . Seriously though its soo unlikely that this would be als related and i hope for you that its something easily sorted . . Good luck and happy xmas . . Alex
 
Hi Gusflower,
I am one of the few where ALS started in my diaphragm. It was a sudden occurrence, followed by
extreme fatigue,inability to carry anything heavy, like a platter of food, inability turn ignition key in car and a
prounced weakness and atrophy of my rt hand and poor sleep due to poor oxygenation.I had no pain or throat
tightness. I doubt you have ALS, but you need to see an MD soon esp regarding heart pain and shortness of breath.
Blessings, Pat
 
Hi Pat Paine. My blessings for you during christmas times. Thanks for the answer. I went to the doc two days ago he checked my lungs and there was no problem. Also they took a blood sample that were fine, I don t know for what though :S
 
Now I've found the problem to my breathing. My diafragma is hanging really loose on in front of my chest. When I push it my chest hurts. Sure I don't want cry out I found the problem but this seems to be my solution. I feel very unhappy this is not only stress and anxiety. I can provide photo evidence if you'd like.
 
Gusflower, as far as your breathing goes you should see a pulmonoligist, who will run a series of test, like a PFT, and a ABG. a PFT shows how your lungs are functioning like intake and expelling of air, lung strength. an ABG check for things like carbon dioxide levels and such.Good Luck, Merry Christmas!
 
I sit and breath. It feels really tight on the right side of my throat, and has been doing so for a long time. In two hours I will go to the doctor. Falling asleep is no option for me.
 
Gusflower. I am glad you are rushing off to see a dr. You cant never see your diaphram hanging in front of your chest, so something odd is happening that should be evaluated by a physician ASAP. Something just does not seem right. Would hate it to be Guliian Barre or something that you sat on for too long. It can come on really fast and stop you breathing just as fast! Keep us informed on how you get on.
 
I was at the clinic and they just said that they could not measure the diaphragm, and that I would need an appointment for it. What if I die while fallig a sleep!?
 
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