Lost voice

I have CMT 1a , I am really struggling with my voice, have been to the doctors and have an accessment apointment for the 22 November with the ENT. It just goes hoarse and sound if I have lost my voice, Does any other CMT sufferers have voice problems, I also have trouble swallowing but I know us CMT,ers suffer with that

[Amanita]

Hi, Kallmeier,

Sorry to hear about your voice problem.

These are mine, but although I also have 1A, they could well be caused differently from yours.

5 years ago I had to leave the choral society I loved singing with because I developed diplophonia (producing 2 different notes at once ) which sounds horrid. Fortunately it doesn't affect my speaking voice - it's only if I try to sing , or to raise my voice ( so hope I'll never need to call for help). I also can have episodes of laryngospasm (sudden terrifying inability to breathe in) from apparently inhaling a minute particle of saliva, which causes my throat to react as though I were drowning . It shuts down , and it is about a minute before breathing resumes- very raspingly at first.

Both of these were originally firmly (mis-) diagnosed as the result of "silent reflux" - which certainly didn't respond to a year's virtually fat-free diet, or speech therapy. A second consultant two years later did not accept the reflux story and more honestly admitted she wasn't sure of the cause but thought CMT could well be a contributory factor. Each time a camera was poked up though my nose and down my throat, but apparently they didn't see a problem with my vocal cords.

So I just live with the voice problem and avoid singing (which I so miss) and if I start to get a laryngospasm I breathe very, very gently through my nose (which is not the instinctive reaction) - and it doesn't develop.

I wish you the best of luck with your appointment. Let us know how you get on.

[Hidden in reply to Amanita]

Oh poor you, sounds terrible

[Amanita in reply to Hidden]

Thanks for your concern, Kallmeier,

Suppose I am pretty well resigned to not singing after a few years, and at least can control a laryngospasm before it gets going (and it happens fairly rarely), so not really so bad now. With CMT I have adopted a pragmatic approach and just try to deal with stuff and live my life, even if my options are more limited.

[spabbygirl in reply to Amanita]

I get that too Amanita, though thankfully I've never had to give up anything because of it. I had the camera thing too, and it produced nothing so my consultant said it probably was CMT related, though he didn't put that in his letter to my GP. I hate those choking episodes and did go to the swallowing clinic for their advice, which was basically about chewing things properly and making food softer and softer to help control it, but like you its often the tiniest bit of saliva that sets it off. I haven't tried the breathing thing, though I will now you mention it. Take care, Lynne

[Amanita in reply to spabbygirl]

Hi Spabbygirl,

Good luck with the gentle nose-breathing technique. Hope it works for you too. You have to think fast and not try to gasp for air through your mouth as that only makes it worse. Though one suggestion is to breathe through your mouth through a straw (hard when you haven't got one handy..) ie only a tiny stream of air going in.

My laryngospasm episodes have only rarely happened while or after eating. The first time was after a gen. anaesthetic.

A consultant reassured me that although you wonder if you will survive when having a laryngospasm episode, if you do stop breathing you become unconscious and the throat will relax and open up again - allowing breathing to resume. Personally I hope it never gets that far.

[spabbygirl in reply to Amanita]

That is reassuring to know Amanita, I'll probably cope with it better now as I'm used to it. It is horrible though. Thanks for that though, it does help to know I'm not alone with suffering it and hopefully if the medics recognise it eventually a cure or way of managing it will be found.

[beachwine]

I have trouble swallowing but an endoscopy found that my esophagus was about a quarter the size it should be. I have suffered for years with acid reflux which caused scar tissue on my esophagus. It was stretched in September while I was hospitalized. In November as an outpatient I will have it stretched again. You are put to sleep so there's nothing to it. I have had choking & swallowing promlems so I might have to have this more & more. So I sympathize with your swallowing problems but mine I can't blame on my CMT. Good luck to you.

Pam

[Paddy201]

I too suffer with my voice menier time people have asked for me Mrs Davies as they think I'm a Mr and the swallowing I'm waiting to go in next month to have the camera down my throat to see whats going on. so yeah I to Suffer with them both