Old 04-19-2013, 04:45 AM #1 (permalink)
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Default 19y., Severe breathing problems, fasciculations, atrophy, no diagnosis - please help!

Hello everyone. I'm only 19, but it's obvious to me that I have ALS or some other motor neuron disease that affects breathing muscles. Let me describe my symptoms for you.

I've been having some breathing problems for as long as 2 years. In the beginning it was minor dyspnea - sometimes I couldn't get enough air into my lungs, so I had to take a deep breath once in a while. The strange thing was, not every of those deep breaths was succesful - sometimes it was like that something was blocking the airway. This problem was getting worse with time, but in the last month it began to worsen with great speed.
So, last Sunday, I began to feel like I was going to suffocate, so I called an ambulance. They ttok some routine tests and figured that my heart was alright, so they said it must be a psychological thing.

But in the last few days it didn't get better, it was getting gradually worse. There were times when breathing became a bit easier, but then the disease hit again with more force. I called ambulance 2 times more in the subsequent days, but they said the same thing "it's all in your head". I went to a neurologist, but because I didn't have any strongly visible atrophy anywhere else, he didn't diagnose me with sclerosis. But I do have some difficulty swallowing, slurred speech and some atrophy in all limbs, but it's just not visible enough!

Is it even possible to have such breathing problems while still being able to walk and swallow? I can't breath through nose, and only like every 10th deep breath goes through. I'm sure i'm gonna die from suffocation if I don't get some ventilation support in a few days, but they won't put me in a hospital without a diagnosis. I live in Russia, in a city of only 1 million population, and healthcare is not very well developed here, I think that's the reason why doctors are so blind and unhelpful.

Please tell me, how can I convince a neurologist that I have sclerosis, that it's not psychological? What tests do I need to take? What other things might be causing this? How can I convince a doctor that I need breathing support when I haven't completely lost the ability to breathe yet? It's all just so bad. I'm getting sleepy and cold when I can't get enough air in. Please help me.
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Old 04-19-2013, 05:13 AM #2 (permalink)
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Default Re: 19y., Severe breathing problems, fasciculations, atrophy, no diagnosis - please h

You need to see a pulmonologist.
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Old 04-19-2013, 11:14 AM #3 (permalink)
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Default Re: 19y., Severe breathing problems, fasciculations, atrophy, no diagnosis - please h

It really doesn't sound like ALS. I don't know what it does sound like it. Sorry, I can't help you. I hope you figure it out.
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Old 04-19-2013, 11:17 AM #4 (permalink)
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Default Re: 19y., Severe breathing problems, fasciculations, atrophy, no diagnosis - please h

It does not sound like ALS .

Посети пулмолога ............. користи пептидни биорегулато БРОНХОГЕН .

Поздрав из Србије,


Никола
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Old 04-19-2013, 12:34 PM #5 (permalink)
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Default Re: 19y., Severe breathing problems, fasciculations, atrophy, no diagnosis - please h

Hi, have you ever been tested for myasthenia gravis? this disease can starts with weakness in the bulbar area and shortness of breathe and it's more common in young age than MND. Has your shortness of breath been confirmed from specialists or it's only perceived? Did you have some tests like emg-ncv done? Anyway it doesn't really sound like als.
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Old 04-19-2013, 03:30 PM #6 (permalink)
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Default Re: 19y., Severe breathing problems, fasciculations, atrophy, no diagnosis - please h

19 is young..Did you see a neuro at the ER? Did they do an EMG test, you mentioned your limbs have atrophy? The breathing you are describing sounds like it could be a panic attack causing hyperventilating. You said you felt like you were going to suffocate but you did not. That is a common feeling with panic attacks. Also, the way you mentioned your breathing it almost sounds like a breathing tic to me. If you see a neuro you may want to ask them about that in addition to your MND questions..Best to you.
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Old 04-19-2013, 04:48 PM #7 (permalink)
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Default Re: 19y., Severe breathing problems, fasciculations, atrophy, no diagnosis - please h

I definitely don't think you ALS. But, it does sound alot like a panic attack causing hyperventilating. Maybe, try to see a psychiatrist if you feel you have anxiety and see if that helps out. Also, have you ever been diagnosed with asthma? I not a doctor so I can't help too much. Just throwing out a few suggestions. Good luck to you. Kim
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