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kman543210

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PALS
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I know this has been covered a lot in the forum, but I have a few questions for those who have been having breathing difficulties due to MND. I have not been diagnosed with ALS and most likely do not have it, but I do have motor nerve involvement, confirmed by 6 EMGs and 3 neurologists (DO, ALS Specialist, and Mayo Clinic neuro). I have a lot of weakness in legs and arms, difficulty swallowing, and a lot of difficulty regulating my breathing even as I type this. I'm not getting a lot of help from my doctors and am trying to figure out if my breathing difficulties are being caused by weakened diaphragm or something else.

My FVC was 73% both in May and September, but when I was hospitalized this past weekend due to breathing difficulties, it was 58% using a bedside machine. Has anyone seen such a drastic drop in FVC, or do you think that the test was done incorrectly. The other test they did was with this hand-held device where I breathed everything out, then sucked on the tube. It's supposed to see if my diaphragm can inhale air, but they did that 4 different time periods during my stay, and they all showed normal. I've never done that test before and am not sure how accurate it is with MNDs.

The other specific questions that I have are concerning how the weakened diaphragm manifests as breathing problems. Do most of you who have a low FVC feel like it's difficult to inhale, exhale, or both? Do you end up breathing faster or just deeper? Is there pain involved in your diaphragm or abdomen from weakened muscles?

Sorry for all the questions, but I am really struggling to regulate my breathing, but no one can give me answers as to why (no, it is not anxiety).
 

Gina

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CALS
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ONTARIO
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CAMBRIDGE
Hi Kman,im not sure if i can help you or not.My husband has als and has a great deal of problems breathing.He is on a bi-pap at night and an oxygen machine during the day.The reason for the bi-pap at night they explained to me that when you are sleeping the muscles in your diafragm take over to help you to breath but if they are weak then you may stop for a short time which is what was happening to him.He has no pain though in his diaphragm.I am sorry that you are having such a hard time getting a proper reading on your breathing difficulties it is very puzzling to me.My husband had all of the tests that you had and they all were virtually the same results so i dont understand why or how yours can vary so much.Do you use a bi-pap or anything to assist your breathing?Sorry that i do not have any more answers for you...God Bless and i hope you get the answers you so desperatly need ......Gina
 

MtPockets

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Ms
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Gulfport
I have been on Bi-pap for about 11 months. My FCV was 70% when last tested which was about a year ago. I am going to have another test this coming month.

The way I understand it if you are laying down the FCV will be a lot lower than when sitting up. May be this would explain your difference?

God Bless
Capt AL
 

davis08

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PALS
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ga.
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kman

My fvc went from about 60 to 40 now it has been between
40 and 45 for a bout year now. It went down to 40 fvc from
60 in 3 mo.

davis
 

kman543210

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PALS
Country
US
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Oregon
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Thanks for the reply Davis. When yours went from 60 to 40 in 3 months, was this a noticeable difference? Did you feel out of breath or just that you couldn't pull in a full breath? Do you have other involvement like difficulty swallowing along with your breathing?

I'm having 24/7 breathing problems and even feel like I'm going to pass out. I can't take in as full of a breath even as recently as 3 weeks ago. I'm going to call my doctor tomorrow to get him to set up another pulmonary study since my neuro cancelled my appointment that I was supposed to have with her last Thursday. Thanks.
 
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