muscle diaphragm, not working

I can't even tell you completely what is going on, but I will try and give you as much info that I have. It started that I have been having trouble breathing when I lye down to sleep and when I walk or exert myself. I had several different kinds of pft tests done and the pulmonologist said my lung function was down 33% when I laid down and that my diaphragm was not working right and that I would have to see a Neurologist.
He said he was going to talk to some of my other Dr's and get back to me to see what they think might be going on. I have major GI issues from my mouth to my bum, some heart, Pelvic floor dysfunction, major neuropathy and the latest is major cognitive issues...is that enough..LOL.
Anyone have any ideas, I would be grateful!!!!
Mary

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I would consider going out to National Jewish Hospital in Denver and having them do a thorough evaluation. I did that in December and learned so much. They are respiratory specialists but also know alot about digestive problems like GERD. Turns out that I have extreme dismotility in my esophagus which is a factor in my lung disease. I am so grateful to have this as a resource as I navigate this disease. Is that something you would consider?

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Dear tonis, I think at this time I am seeing some of the best, I am here at Johns Hopkins in Maryland. They have run the gamete of tests on me and I'm a little nervous of the results. I was just wondering if anyone has ever had anything like this before??

Stay Well Mary

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I have diaphram issues which is caused by a neruomuscalur disease Myasthenia Gravis. when I am having a bad flair from the disease is when i have the most issues with the diaphram.

I wish you luck, and pray they test you for everything.

Annette

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Hi Annette,

They are checking me for this right now, they just sent me for blood work. May I ask how you were diagnosed with it and what testing you had to go through? Thanks for the info.

Mary

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Hey Mary,

There are multiple tests, blood work, nerve tests ect. I will see if I can locate all the different test. I was diagnosed in May 2010, I had started have a droopy eyelid and double vision. I went to my opthomoligst and he diagnosed me then I was referred to a neurologist that specilizes in MG. It went from being in the eyes to weakness with swallow, legs, arms.. reason I cut my hair short. I also had bouts of shortness of breath.

I am sero-negative which means the antibodies did not show up in my bloodwork, but I have all the symptoms of MG. There are a lot of us that are sero-negative. There are antibodies that they don't test for.

What all symptoms do you have?? Also check out dailystrength.org I am also on that site and the mg group has a wealth of knowledge. they have helped me keep my sanity.. lol

Annette

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Hi Annette, we could be twins ...LOL, I'm waiting for my blood test to come back now, but it always comes back sero-negative! I have very bad muscle weakness for some time, especially in my thighs but now, my diagram has become week and is giving me trouble breathing. I'm always choking have heart issues, Barrett's esophagus, my colon has stopped working , my eyes are weak but my Dr kept telling me to open my eyes ,but I don't think he knew what was going on. I fall over a lot from weakness, I'm not crazy about the Neuro I'm seeing now, I have to find the right Neuro to deal with this muscle stuff.
I looked up the dailystrenght.org but there are so many of them how do I find you...LOL???

Thanks for all your help I'm glad I found you!
Mary

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I am on there as txkiki53

join the mg group...

let me know if you still have problems. my personal email is txkiki53@gmail.com

Annette

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I'm a twit I found it right after I sent that message, so I will see you there on that site and maybe you all will be able to help me understand things a bit better. Thanks again Mary

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