Hard to swallow at times?

Hi there, I was diagnosed at 10 years old with CMT1a. I am now 39 and starting to see some of the atrophy I was hoping would skip me. :) Recently I started having some issues swallowing. It feels like I have something lodged at the bottom right area of my throat. I feel really bothered by it when I lie on my back.

Has anyone else developed swallowing issues?

(Please help!)

16 Replies

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  • Hi,

    Yes, I have. I thought I was imagining at first, but sometimes it felt like I was choking even when drinking water. My doctor said it was probably nothing and absolutely not connected to CMT.

    I had tests done, (camera up nose & down throat). It turns out the nerves have weakened on the left side making it harder to swallow, plus the nerves in my tongue aren't working properly. My tongue falls to one side. I had felt I slurred somethings but again thought I was imagining it.

    Even with this evidence my doctor stills says it's not connected. I'm English but live in Sweden. Sadly they don't appear to be so knowledgable on different symptoms. I went online and found that this is definitely a symptom. I have CMT type N.

  • I know what you mean... many of the Doctors I have seen in the UK haven't even heard of CMT and it is more than frustrating...

  • Hi, yes I do too, my neurologist explained that my gullet is sluggish thanx to my CMT. I have to drink while eating or have 'wet meals' x

  • Me too... I also have recurring problems where I have food/drink going down my aesophagus and awful coughing fits/vomiting as a result... CMT is quite insidious and the symptoms of it are mutlifarious... I often get the feeling that the 'specialists' I come into contact with simply don't have enough knowledge to be able to put 2 and 2 together ...

  • sorry, trachea...

  • I have had this since I was a child's before I knew I had CMT .a couple of times after an operation I've been so bad I couldn't eat because I couldn't swallow. I have never had any help with this.

  • Hi,

    Although I am yet to have a confirmed diagnosis of CMT I'm as sure as I can be that I have it. Whilst on here, I've come across a couple of posts that have described symptoms I have but previously thought must be due to something separate. Have a look at the post, "We'll Gals and Guys, here we all go once again" by John1945.

    I have difficulties with swallowing, permanent discomfort in my throat as if something is there that shouldn't be, foul taste in my mouth which affects my taste generally. As John suggests, I have now asked for a barium swallow x Ray which my GP has agreed to look into.

    Whatever is behind your swallowing difficulty (in my opinion could well be CMT... I've read reports of this problem by too many CMT sufferers for it to be just coincidence)... I hope you get the help you need to treat and/or manage your swallowing difficulty. If you've hit a block with medical investigations, you could ask for a referral to a Speech and Language Therapist... They will be able to assess whether you are swallowing safely ie without food and drink ending up in your lungs... and offer you advice.

    All the best

    Ros

  • Hi I too have throat issues like having to eat careful otherwise I can choke and I've developed respiratory issues not yet sure what is causing it by profs that I've seen so far and getting treated as if it's asthma but my throat does also bother me at times and as far as I no is cmt can do this as it can narrow your throat I think I have some kind of effection I would eat n drink with care try eating healthy and if u smoke try stopping as I also have done. 😇 I've been told to stop smoking and drinking alcohol 😱😢which I'm doin OK with. As for any other treatments your guess is as gd as mine soz Good luck

  • Hi

    There is evidence out there of cranial nerve involvement in a significant number of people with CMT. This actually quite easily explains why some of us have swallowing and respiratory problems. I am sure I have problems with both my diaphragm and intercostal muscles... both of which are vital for breathing.

    Small aside: My diaphragm goes into spasm every day at least once a day... ie hiccups!

  • Yeah me too... I've had the same for 15 years recurring... very unpleasant !

  • Never swallow when you are lying down

  • I also have CMT type 1(a) and have the same problem. If it happens make sure you are in the upright position

    and never start panicking !

  • I meant to add...... I also have problems with my hearing, right side. I can't have my mobile on my right ear as everything sounds like it's miles away. Again, even after tests, my doctor said there's no connection, and because the hearing loss isn't so severe they won't do anything.

    I have CMT type 2N. I've been told this is really rare, ( only a handful of families in the world). What I don't understand, is if it is so rare and hardly any studies have been done, how can my doctor really know if it's connected to CMT or not?

  • I have problems with my hearing as well. I've now got 2 hearing aids but find them very uncomfortable to wear for any length of time. They don't fit behind my ears very well and make my left ear itch after about an hour.

  • i have same problem, had camera up nose and down throat, also bareum swallow and outcome was weak gullet muscle due to my cmt, i drink water with every meal now to wash food down.

  • Wow. Thank you all so much and, at the same time, I am sorry for all of your troubles too.

    In addition to the swallowing, I've developed very loud tinnitus and slight breathing weakness. I am actually going to Mass General in Boston next week. It is one of the CMT Centers of Excellence. I am getting an EMG and plan on addressing all of this with them. If I find out anything particularly interesting, I will report back.

    I also plan on grilling them about the PXT-3003 drug trials!

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