Old 04-15-2018, 05:12 PM #1 (permalink)
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Default Could I have respiratory onset als?

Hi everyone my name is jake and Iím 28 years old. My symptoms started over 2 years ago with random twitching and mild breathing issues.

This past year my breathing has declined a lot. Iíve had a full cardiac and pulmonary work up all normal except pft showing restriction.

I then saw a neuromuscular specialist in November 2016 which performed a emg which was normal. I see the specialist again next month I hope he does another emg.

Iím constantly feeling smothered and it worse at times. The past moth Iíve noticed a lot of my muscles cramp with the lightest exertion especially my upper thighs.

I go up a couple flights of stir and my upper thighs cramp and hurt. Iíve also slowly started to develop difficulty swallowing food gets stuck in my throat.
Iíll have times where my breathing gets so bad it makes me panic itís so scary..

I can hardly do anything now without getting breathless. Anyone with respiratory onset present this way did you have similar symptoms?
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Old 04-15-2018, 05:15 PM #2 (permalink)
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Default Re: Could I have respiratory onset als?

I also notice severe fatigue in my limbs when doing small things like shaving, holding phone etc.
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Old 04-15-2018, 05:47 PM #3 (permalink)
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Unhappy Re: Could I have respiratory onset als?

Also can this present with cramps? I can barely do much with my legs without my thighs cramping so bad. I did like 10 squats with just my body weight and got bad cramps. Now my legs are really weak and itís hard to walk...
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Old 04-15-2018, 06:16 PM #4 (permalink)
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Default Re: Could I have respiratory onset als?

Give me a minute. Reading.

OK. Forget ALS. I don't how you turned those symptoms into ALS.

See the family doc, an MD. Tell her everything you said here. Ask if it could be stress. Have there been changes in your life or your plans recently?

Check electrolytes. When I get cramps (I do NOT have ALS) I drink a Gatorade and it clears right up.

A neurology assessment will only see neuro stuff. Could be diet. Could be psych. Maybe organic. That's why your family MD--a generalist--needs to see this.
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Old 04-15-2018, 06:40 PM #5 (permalink)
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Default Re: Could I have respiratory onset als?

I agree with Mike. There are many things this could be. Iíd also ask your doc to check your thyroid.

Since EMG was normal at the time you had ďtwitching and breathing issuesĒ, this essentially rules out ALS. So would 2 years of symptoms without any other specific muscle function failure.
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Old 04-15-2018, 06:40 PM #6 (permalink)
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Default Re: Could I have respiratory onset als?

Much thanks for the reply. What about my shortness of breath. Considering my heart and lungs check out could that not be als? I saw my pcp last week which recommends maybe a neuro cause to my breathing.
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Old 04-15-2018, 06:44 PM #7 (permalink)
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Default Re: Could I have respiratory onset als?

Thanks Karen! I had my thyroid checked too it was normal also. Only thing that has been abnormal so far is my testosterone which was 186 which doesn’t relate to my symptoms according to the doc.
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Old 04-15-2018, 06:45 PM #8 (permalink)
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Default Re: Could I have respiratory onset als?

Best to tell your doc about your symptoms and let the doc direct the workup. If you go in there stating youíre worried about ALS, other more likely things can be missed.
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Old 04-15-2018, 06:49 PM #9 (permalink)
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Default Re: Could I have respiratory onset als?

I'm not a doc and I don't have ALS. But a year ago, I was so easily out of breath and so easily fatigued I thought I was dying.

I was.

My heart and lungs checked out great, no problem.

Took awhile, but it turned out that I was waaay out of shape. The cells in my muscles simply were untrained and didn't know how to efficiently make sugar into movement.

Now I'm AOK. Needed PT, diet and exercise. Very slowly got better. Don't know if this applies to you, but I thought I'd add it.
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Old 04-15-2018, 07:02 PM #10 (permalink)
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Default Re: Could I have respiratory onset als?

So my shortness of breath doesnít sound like the als type shortness of breath?
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Old 04-15-2018, 07:04 PM #11 (permalink)
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Default Re: Could I have respiratory onset als?

Can this be weakness of my respiratory muscles?
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Old 04-15-2018, 07:15 PM #12 (permalink)
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Default Re: Could I have respiratory onset als?

Quote:
Originally Posted by Tucker753 View Post
So my shortness of breath doesnít sound like the als type shortness of breath?
Not with the normal EMG.
Lots of things can cause shortness of breath. Please work with your doctor. No one here can give you more specific answers. Thatís your doctorís job.
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Old 04-15-2018, 07:16 PM #13 (permalink)
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Default Re: Could I have respiratory onset als?

Not sure why you would continue to ask something after being given answers and assurance by two members well versed in ALS. It's good news, and means you don't need to seek further assurances from the folks here.

Please ask your doctor what could be causing your symptoms. The members here know ALS- so general medical advice is best received from a doctor, in person, and who can examine you based on the things you are worried about. Please let us know how it went after your doctor's appointment. It's important to concentrate on finding the real reasons for your symptoms now that you have been told an ALS forum is not the place for you.

best wishes
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Old 04-15-2018, 08:57 PM #14 (permalink)
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Default Re: Could I have respiratory onset als?

Your shortness of breath is restrictive, think allergies or straight up asthma. The type of breathing issues in ALS are related to the diaphragm and other muscles stop working due to the phrenic nerve dying, not restriction. I see puffers in your future not ALS.
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Old 04-15-2018, 10:54 PM #15 (permalink)
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Default Re: Could I have respiratory onset als?

Edited... got lost trying to follow this one.

Your second sentence, " I’ve had a full cardiac and pulmonary work up all normal except pft showing restriction." then your replies that followed. Sorry.

Tucker, follow through with your doctors.

PS. Are you over weight? For many people just 20 pounds or another 10 can cause most of the symptoms you have posted.

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