Charcot-Marie-Tooth UK
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Restictive lung disease

Hi to you all & Happy Easter.

4 yrs ago l was diagnosed through CT scan as having left phrenic nerve palsy with elevated hemidiaphragm with collapsed lung at the base.

I have noticed my breathing hasn't been great lately so went to my GP who sent me off for a sprirometry test which shows moderate restictive patterns so l have an appointment with a respiratory physician this Tuesday for SOBOE ( shortness of breath on exertion) & restictive lung disease.

Has anyone else here have respiratory problems & or restictive lung disease & if so can you please share with me your experience in dealing with this.

Thanks in advance xo

4 Replies

I have breathing problems when lying flat . noticed it some years before diagnosis. I had trouble coordinating my breathing lying back in the dentist chair. And yet my neurologist says I wouldn't have diaphragm problems. My gp wasn't sure what diagnostic tool to use, prior to him writing to my neurologist. Now I've read you can have a CT scan I will request that.

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Hi curlyburly,

I hope the CT can give you some answers.

Good luck with it & let me know how you go :-)

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Sorry l just realised l spelt your name wrong!

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I have exactly the same as you, i am CMT 1A and have all the other problems associated with it. Have had lung function tests which show slight restriction. What i have had difficulty doing is persuading my GP that its inclines that are the problem and climbing stairs. My big problem with GP's is that they dont understand CMT and i have been backwards and forwards with my stomach problems. They tend to put everything down to anxiety and it is quite frustrating, l have persuaded my GP to give me a reliever inhaler to take when i know i am going to climb, l know i do panick so it affects my breathing, have only used it twice and felt a lot better. L am on the waiting list to go to pulmonary breathing lessons which i hope will help. Strangely enough i go to gym twice a week and it doesnt make me breathless. l hope you find a solution that helps.


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