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!)
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.
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 ...
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!
I get hiccups all the time and have trouble swallowing... I was wondering if my CMT was to blame, lol. Guess it's my cranial nerves, thanks for this info.
Yeah me too... I've had the same for 15 years recurring... very unpleasant !
Never swallow when you are lying down
Do you have a wierd cough like your body is trying to hack out a cat... but nothing is there?
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 eyes, hearing and the swollowing issuse. Can't belive no one is foooking listening to us CMTers lol x
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!
Hi! You have any updates on your situation? ☺ I have the exact same symptoms as you. Problens with swallowing and breathing as well as tinnitus. Thank you in advance.
CMT CAUSES BULBAR PALSY
I have had that awhile and now losing my voice. I dont know if i have cidp or cmt. But it is strange you mention this...
I have noticed with me it is hatd to swallow liquids than food
I have difficulty drinking if I am standing up. Sounds stupid, but it’s true.
Wow.. not stupid at all. Maybe because you are consentrating on standing and not as much on swallowing
Hi, this is all very familiar in my case. I am waiting to see a Neurologist, but have ALL the classic signs of CMT (aged 66 ). For a long long time I have had swallowing problems, even as a child. I cannot eat hard food or tough meat, I have had choking incidents to. I always drink with my food as it helps it go down. Recently I have felt food stick in my gullet, but it moves on with a drink. However, last week I had some rice and chicken and it got stuck, I got a real fright and ended up vomiting it up. I cough a lot and have done all my life, but no reason found. I now notice my tongue does not stretch right back as it did before or to the sides, I used to be able to feel my gums right to the back, but in the last 2 years this has all changed. I also have Tinnitus, Sjogrens and Raynauds syndromes. I believe a lot of those are connected with nerve damage. I also have a family history of MS, but my MRI has excluded this. These issues MUST be connected if so many have them.
I cough a lot as well,especially in the morning in the winter even though I’m ok the rest of the day. I’ve also noticed the same as you with my tongue. I thought I must be imagining it.
You are definitely not imagining it at all. I have also noticed that in the last 2 years I have had a slight drool at the left side of my mouth, not every day, but just comes on, more so when I am eating. I was worried about some kind of small stroke, but my mouth is not drooping or anything. I think it is a palsy of some sort, which is nerve damage. I will tell all this to my Neurologist when I eventually get my first appointment. All the symptoms has gotten worse over the last 2 years, but then age might not help either. It is too much of a coincidence that all the folks on here have the same symptoms with speech, swallowing, tongue, tinnitus and hearing, got to be a connection somewhere. I am a very curious person and having worked in Medicine all my life I won't let things lie till I get to the bottom of them.
Do you get short of breath sometimes? Sometimes it has been bad enough to use my grandsons inhaler. I’ve told the doctor and she tested me for asthma but that was it. Never mentioned it again.
Yes, I get breathless on and off, and was told many years ago I had asthma and was given inhalers. The only reason I would have asthma would be allergies, but I have had treatment for those and they are definitely not as bad now. When I get a cold or flu I get very breathless and have needed a short sharp course of high dose steroids to help me to breath normally again. So most likely diaphragm is involved. I often find I cannot take a normal deep breath as I should. So not sure if the symptoms are trachea or diaphragm!
I'm just waiting to go into hospital to have a camera put down my throat as I'm having trouble swallowing not 'll the time but more frequent. Manly liquids. I totally have Raynards and my hearing is getting worse. I DONT LIVE MY LIFE I JUST EXIST
Never never give up, I have lived with all these odd symptoms since a child and never let it stop me doing most things, apart from sports of course. Useless at running and other sports that take an enormous amount of energy. However, I did play darts for a ladies team for 20 years until my shoulder gave out. You have to have a positive attitude. I have always managed to overcome all my conditions by adapting my life to suit. I have Raynauds, Sjogrens, Myopathy, Lactose Intolerance, Tinnitus, IBS, terrible circulation in my legs with 3 operations, Carpal Tunnel operated both hands, which did make a difference, on top of all that old age coming along and Osteo-arthritis knees and fingers etc. Try to be positive and do what you can and what you enjoy. I am happy to lend an ear if you need one.
Yes I have trouble swallowing & sometimes feel like food is stuck & no amount of water washes it down. Just this past month I was hospitalized with abdominal problems. One of the tests was an endoscopy. If you are not familiar with this procedure, you are sedated & a tube with camera is fed down your esophagus to your stomach. It was found I had distal stricture. My esophagus was no where near the size of a normal one. Two days later I was put to sleep again & my esophagus stretched. No after effect. Doctor said it was caused from years of acid reflux & he would probably do it again in a couple of months. Today is my post hospital appointment with gastrointestinal doctor. So I'll know more later. So this is one thing I can't blame on CMT. Although I understand people with CMT do have swallowing problems mine was just different. Good luck to you.
I too feel like there is something in my throat constantly. This causes me to try and persistently clear my throat.
Yep. I choke too. Almost daily. Sometimes my tablet gets stuck in my throat . I try to drink plenty of water with it.
Thanks so much for sharing what you’re dealing with!
I have all of the same symptoms… Mine started over 20 years ago, now I am in my 60s, back then doctors just kind of looked at me like they didn’t know what to do and some would just say we don’t know what’s causing You’re pain or whatever I was that I was there for.
But finally after all this time I’m getting some answers, my neurologist gave me a diagnosis of Charcot-Marie-Tooth disease.
I’m not happy that there’s something wrong, but I’m happy now I can finally understand what is going on and look up what to do for all these problems and the pain!
One of the things I just learned today in the cold winter months keep warm, it will help with the pain🌷💜
Hi there, I also have cmt1a I was also diagnosed at 10 yrs old I’m now 36. For about a year or so I’ve noticed that I have the feeling of something being in the back of my throat but just ignored it! In the last few weeks though I’ve actually had two episodes of feeling as though I can’t breath properly so I think I need to contact my specialist.
I don't know if your problems with breathing difficulty have been the same as I have experienced. Suddenly, and for no apparent reason, your throat tightens (actually your vocal cords closing together) so that you can't breathe in. It is a terrifying experience called laryngospasm. After what seems a very long time you can start to drag in a little air with difficulty, making a loud harsh gasping sound (stridor) until eventually you breathe more normally. Apparently it only lasts about 60-90 seconds, but seems much longer.
I am told that if you actually lost consciousness because of lack of air, your throat would relax and you would resume breathing. Fortunately I have not experienced this.
If you do find you are getting an episode of laryngospasm the way to deal with it is to shut your mouth and breathe a little air very gently through your nose. This is counterintuitive but it really does work.
If you are having episodes of laryngospasm you should tell your doctor.
My mother who I now know also had CMT 1A, had difficulty if she had to swallow a pill. She had to divide it into small pieces..
Well I'm back & can identify with those of you that have a serious cough. "hacking up a cat" was the description. My doc has blamed it on my Sjorgrens. I see my neurologist again in October & plan to ask him about a CMT connection. Life might be a bowl of cherries but I have ended up with the pits.
I also struggle to swallow sometimes. I have CMT 1A and the last few years had a progresively atrophy in my legs arms and hands. I had a legio of feet operations that make it easier for me to though I can't walk far distances. I also have a lot of pain in my hands back and legs. The most difficult thing to do is to accept it and get on with my life
CMT seems to be getting worse
Reflex 
PIP face-to-face assessment 
CMT and multiple other problems
Well Gals & Guys, here we all go once again ?