Old 01-02-2018, 06:07 PM #1 (permalink)
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Default I believe I have respiratory onset ALS

Hi everyone
Try to make long story somewhat short.

It started after 10 day long flue-like symptoms in aug. Followed by left-sided chest pain and then breathlessness at exertion. Pain subsided and my breathing issues has stablized somewhat. I have to sleep with inclined bed to not wake up of breathlessness. I have done very extensive work ups nothing has been found yet.

In Okt/nov I noticed strong repeating twitching of my right little finger. I shortly if I remember correctly started having twitches everywhere. Nothing that bothered me and the twitches where short and subtle in the rest of my body unlike how it was with my right little finger.

At the end of november I started to have very strong twitches everywhere. My limbs, abdomen, back. Now a months later I have noticed of what I am almost certain of atrophy in both my deltoid muscles, left neck, hands and feets. More to the left then to the right but it seems somewhat symmetrical. Strangely I haven't felt or experienced any significant weakness or loss of function, although my joints feel instable where there is atrophy and my strength is somewhat limited by instability pain in this areas. I also had twitches in my chin/cheeks and tounge.
I have not very clear sign of upper motor neuron engagement. I have been hyperreflexive for long time, but I dont recall them being this brisk. I have positive hoffman both sides, negative babinski on right and unresponsive babinski on left. No spasticity.

After following extensive research I have come to believe that I have some sort of motor neuron disease and my highest suspicion being ALS. The last couple of weeks been horrible as I've tried to come to terms with this
To my understanding respiratory onset ALS is rare and being 23 year old male it becomes remarkably rare. This fact has not calmed my senses tho.

I have an appointment with neurologist in the comings months. I just wanted to ask if you guys know a initial presentation of symptoms like this of ALS.
Does it happen that you experience twitches and thereafter atrophy and last weakness? I seem to experience the reverse order?
I also have since the start of this felt fatigue and sickness like feeling that I have been attributing to my breathing issues? Is it common that PALS experience sickness like feeling and fatigue in the begining?

Thanks for your answers!

Take care <3

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Old 01-02-2018, 06:30 PM #2 (permalink)
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Default Re: I believe I have respiratory onset ALS

This does not fit the usual pattern of ALS. While your symptoms are worrying for sure, it's likely MND is not on your list of potential issues.

The only person who can assess actual atrophy is a doctor. Same with reflexes. It's unclear which symptoms and signs your doctor has detected and which ones you think you show. It's also unclear what your doctor has ruled out or what tests you've had.
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Old 01-02-2018, 08:30 PM #3 (permalink)
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Default Re: I believe I have respiratory onset ALS

The fairly well-defined onset of a respiratory illness would be inconsistent with the onset of ALS. Most likely you had a respiratory infection, possibly with pleurisy. The twitching that followed is nonspecific and could be anything. Hopefully the neurologist will be able to reassure, especially as you have not lost function. ALS is not a concern here.
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Old 01-02-2018, 09:46 PM #4 (permalink)
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Default Re: I believe I have respiratory onset ALS

Agreed with All here, your concern is not ALS.

I am not a Doctor and now t capable of diagnosing anyone, but I will say I had symptoms much like yours for an entire quarter in college. Turns out I had a very nasty viral bronchitis that really took it out of my whole body. There was less inclination to send healthy young people to specialists when I was 18, so I was told to take a leave from school/ Work, sleep and drink water.

Three weeks of that and symptoms were gone, never to be heard from again. This is NOT medical advice, I am NOT qualified to give that. Just saying I sure did not have ALS.
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Old 01-03-2018, 01:03 PM #5 (permalink)
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Default Re: I believe I have respiratory onset ALS

Quote:
Originally Posted by ShiftKicker View Post
This does not fit the usual pattern of ALS. While your symptoms are worrying for sure, it's likely MND is not on your list of potential issues.

The only person who can assess actual atrophy is a doctor. Same with reflexes. It's unclear which symptoms and signs your doctor has detected and which ones you think you show. It's also unclear what your doctor has ruled out or what tests you've had.
Thanks for you answers!

Being a medical student I have tried to be engaged with the reasoning and diagnostic considerations and work-ups and I still try to find an answer as nothing has been found yet. I have done chest radiography, spirometry, CT-scan, echocardiography, ecg, extensive laboratory tests. They have ruled out any pure cardiac or respiratory disease, except for minor asthma that showed up in my pulmonary function test.
I had not even thought of a neurologic etiology before I noticed atrophy. I first noticed in dec my left neck being somewhat smaller after experiencing pain and instability in this area and then my left hand with some subtle changes. I went to my GP and told her about my concerns. While she found a normal neuro status with somewhat brisk reflexes, she did not notice any atrophy or clinical weakness. However I did get an appointment with neuro. Since then the atrophy has progressed to various body parts in a couple of weeks which concerns me a lot being indicative of bad prognosis if this would be MND.
I'm kinda stressed to speeden up the diagnostic work up. The combination of twitching, unclear breathing issues and atrophy does sound bad to me. I know my observations still need to be verified by an experienced neuro-doc to be of any clinical significance and after that there is still much works-up to do, but at this point I dont dare to have to much hopes.

Thanks for your help guys. I'll be sure to update if possible. God bless<3
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Old 01-03-2018, 02:00 PM #6 (permalink)
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Default Re: I believe I have respiratory onset ALS

Don't yet try to "come to terms" with anything this bad and don't give up hope. I hope your neuro appointment will clear you of any MND. Until then try to really distract yourself from your health if possible. No matter what's the reason for your symptoms, stress will surely not be positive.
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Old 01-03-2018, 02:42 PM #7 (permalink)
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Default Re: I believe I have respiratory onset ALS

Inshallah, I'm sorry to see you hurt yourself this way. I happens to many medical students. It is wrong to do that. Don't lead the doctor to diagnose you.

Your most recent post convinces me even more that you don't have ALS.
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Old 01-03-2018, 03:37 PM #8 (permalink)
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Default Re: I believe I have respiratory onset ALS

Please don’t lose hope. You’re young and impressionable and at too much risk for self-diagnosing. Leave the diagnosing to the neurologist. I was once a medical student too, so I get it.
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Old 01-03-2018, 08:41 PM #9 (permalink)
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Default Re: I believe I have respiratory onset ALS

Thinking of you A lot of wise words here, please heed them. Your stress level must be through the roof.take care of yourself.
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