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nreppuhn

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Good Evening! I want to start off by saying that I write here with complete respect for eeryone on the forum. I close family friend passed away a few years ago after his battle with ALS (bulbar onset), and I think that may be what has the disease on the fore-front of my mind.

I have read the stickies and have searched the forum, but havent found to much for what I am about to ask. I am wondering if I possibly have respiratory onset ALS.First of, I am a 22 year old male. For the last 3 weeks I have had chronic shortness of breath with moments that are worse then others (breathing gets really bad for awhile and then settles down). It doesnt seem to happen so much with exertion.

I went to a pulmonologist and got a pft. MY FVC was 65% of where it should be. My FEV1 was 77% and my Fev1/FVC was 118%. My TLC was at 95% and MVV at 73%

I asked the pulmonologist if this could be neuro/musc related and he said no -- he stated it was related to my vocal cords dysfunctioning. He also said that if my shortness of breath was relative to my diaphram it would be worse when bending over or lying on my back (which it is not). However, I find my numbers a tad low and indicative of a restrictiveness of some kind -- and googling 'low FVC' brought up quite a few ALS posts.

My swallowing feels weak at times, but I dont actually have noticeable weakess swallowing food or anything. No weakness in any other part of the body fromwhat I can tell.

Is it possible that my low numbers are relative to ALS, and that shortness of breath is my sole/intitial symptom? Your thoughts would be appreciated!

Thanks!

-Nick
 
Nick. I think you should listen to your Dr. He has told you that it could not be related to ALS. He is a specialist in these things so he should know. He is also probably knowledgeable when it comes to ALS as they do see patients with this condition from time to time.
He should have explained what he thought it may be caused by? And what you should be doing about it?

You are very young to have a diagnosis of ALS, so that is another strike for NO ALS.

Best regards
aly
 
Thanks for the reply. The doctors diagnosis was 'Vocal Cord Dysfunction' -- my vocal cords dont open up properly when I inhale. I just thought that FVC (which measures exhaled air) was extra low -- and like I said, googling 'Low FVC' wasnt my wisest idea. Just wasn't sure if anyone here experience anything similar.

I know with our friend, respitory issues didn't hit him until much later (he had bulbar onset)
 
Sounds like another case of bad medical advice from Dr. Giggle brought you to us. Go with what your pulmonologist says. If he suspects any other cause for your condition, I'm sure he'll make the appropriate and necessary referrals.
 
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