Breathing problems

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Breathing problems

Postby taichi » Sun Nov 11, 2012 11:13 am

I would be interested if anyone with breathing problelms has found any help. My pul was at a loss, he knowes nothing about sm.
through alot of test he just assumes it's the muscles. In your opinion should i see a critical pul.
after reading wildfr's posting I really think there not anything to help. Any info would br greatley appreciated.

Barbara
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Re: Breathing problems

Postby Janice » Wed Nov 21, 2012 1:13 pm

Hi Barbara!

Several yrs ago, I had great difficulty breathing, for about 4 months. It was extremely frustrating for me because no one could help. My oxygen levels, and all other tests continued to indicate no problem. However, I was clearly in distress and it was agonizing. It would take about 5 brief inhalations to every 1 exhale. It was very difficult to explain how it felt, but very easy to see how difficult it was. As I mentioned, thus was my way of breathing for approximately 4-5 months.

After the breathing issue, I had chronic hoarseness, then speech difficulty from a paralyzed tongue. My docs project that the next phase will be difficulty swallowing. Thank GOD that hasn't been an issue for me, although I have gone thru several levels of speech difficulty. Each time, I train myself to be understood by others. I'm currently going thru a new phase of speech. It frustrating, but not nearly as frustrating as the breathing difficulty was. I was given 2 inhalers to try to help & thankfully, sometimes they did help.

I'm very sorry if you're finding it quite difficult to get help. It seems w/some of these neurological anomalies, that's just the way it is. It sucks for those of us dealing w/the various issues, but we have no choice other than to carry on the best way we can. My thoughts & prayers are w/you during this difficult time in your journey.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Breathing problems

Postby drummergrl » Sun Dec 02, 2012 11:33 pm

I struggle with this as well, but unfortunately I don't have much help. I ended up in the ER for this a few years ago and all anyone could come up with is that my syrinx, which caused a pretty large spinal curvature, impedes my lungs and made that "hyper-elongated." They gave me an inhaler of Albuterol but it never helped so I don't use it.

One thing you might try is seeing an osteopath- I saw a neuromusculoskeltal (such a mouthful!) specialist over the summer who was trying to figure out the breathing stuff. I had an unrelated medical emergency shortly after, so I had to stop seeing her, but maybe you could look into seeing someone like that, who knows SM?

I wish I had the answers...but you're not alone in this and if I make anymore headway I'll be sure to pass it along!
CM, SM, Scoliosis
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Re: Breathing problems

Postby Graybo » Mon Dec 03, 2012 7:51 am

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Last edited by Graybo on Wed Jan 09, 2013 1:50 pm, edited 1 time in total.
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Re: Breathing problems

Postby wildfyr » Mon Dec 24, 2012 11:25 pm

Hi, It's wildfyr. I have not been on here for quite awhile, but I am still kicking. I still have the breathing problems. My critical care pulmonologist told me that oxygen would not help due to the fact that my problem is in the exhaling. I am not getting all the air out of my lungs when I breathe. He said that the muscles that make the lungs work are failing. I have found something that helps me tremendously though. A convertible and a motorcycle. Both help me get the air in and out of my lungs. I feel great when I am doing both of those things. You should try it.
sm T-4 thru T11,3 hemangiomas T11&T12, scoliosis, in respiratory failure Jan: 2010 now terminal, Voice effected, ., being put on portable ventilator and soon a feeding tube due to aspirating into my lungs. December, 2010, colostomy pending
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