BREATHING QUESTION from member "Gunner"

[CMTerSam]

Gunner sent me a message asking the following and have answered to the best of my own personal experiences, but thought he'd benefit from input of others on this subject as breathing is not something that affects me too much at the moment.

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GUNNER ASKED:

"I have breathing difficulties as soon as I exert myself which doesn't take a lot and while lying down my stomach reacts by jolting which can stop me from sleeping.

My stomach also feels and looks very bloated. I keep telling my GP but getting nowhere, what can I do?

I also think my diaphragm is weak and I have trouble regulating my breathing. Any advice would be appreciated thanks!"

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So, any advice for Gunner folks?

[CMTUnitedKindom Partner]

Hi Sam/Gunner

Firstly, I would say that a bloated stomach is nothing to do with CMT - as far as I'm aware. Try seeing another GP - sometimes that helps!!

Secondly, diaphragm weakness usually manifests itself with morning headaches initially - due to carbon dioxide not being expelled properly at night - that jolting sensation whilst lying on your stomach could be your body trying to tell you that! Not so sure about the "regulating" breathing, but it's possible, I suppose. Or perhaps you have sleep apnea which is another fairly common, but separate, problem.

As far as breathing problems whilst exerting yourself, I think many of us have that problem, and it's called "being chronically unfit!" - it does not necessarily indicate CMT related breathing problems.

So I think there is a case for further investigation of your breathing problems, and therefore, ask your GP for a referral to a respiritory specialist (can't think how to spell that now!). If they believe that there is CMT related problems, you will probably need a sleep study, which usually involves one night in hospital hooked up to various monitors to check your breathing whilst you sleep. This monitoring would also pick up sleep apnea, if that's what the problem is. Or discuss this with your neurologist, if you have good one.

In the meantime, try sleeping a bit more propped up - that might help. Basically, the diaphragm uses gravity to help it function during the day, but at night, whilst lying down, this doesn't happen, which is why breathing problems tend to be worse at night.

Hope this all helps

Karen

[John1945]

Hello to Gunner/Sam >>>>>

My own G.P. is most supportive to me, and takes a keen interest in my ongoing Cmt Type 1A and its "slow-progressively-worsening" problems:

I had mentioned to him, that many more UK Cmt sufferers were now reporting problems with their diaphram which is controlled by the "Phrenic" nerves from inside your brain ?

He then much to my surprise, told me that my diaphram is actually a parachute shaped "SHEET-MUSCLE ? which is linked to your breathing: So as a muscle ! is it possible that my Cmt's typical 'muscle-wasting' characteristic's and my ongoing Cmt 'nerve-damage' be interfering with my diaphram's function ?

O.K. he saId, right let's find out ?

He then kindly refered me to a Senior Respiritory Hospital Consultant for further examination:

As is all far to common in the NHS, this most professional Respiritory Consultant had never heard of Cmt, however, he sent me into his investigation clinic for a series of respiritory tests, whilst he researched Cmt online: All my tests were reported as 77/85% which is good, for a 69 year old male, however, he then decided to further arrange for me to have an OD Ultrasound Scan, which actually was done at a later date, by another Consultant Raidologist doctor:

A few weeks later he wrote to me personally at home, informing me that my diaphram was working as normal with no signs of muscle weakness:

I was most appreciative of both my own GP, and this most helpful Respiritory Consultant for their kind care:

I know from reading the many various comments from Cmt sufferers, who so many times are simply told, "Cmt ! sorry, there is no cure, so off you go and just live with it"!

This type of attitude, can be typical for a health professional who has never seen a single case of Cmt, so they then "cover-up" their own personal inadequacy by discharging you, and sending you away instead of arranging for you to be supported by other, and the many, and available NHS resources !

Never give up ! Tell Cmt, "sorry you ain't gonna beat me " !

[Whiterose]

Hi Gunner I have some breathing probe and was diagnosed with asthma. I use a spray in the morning which opens the diaphragm/ lungs helps with breathing. Regarding the stomach and bloating I have noticed this gets worse eating anything with wheat in it. Terese