Hi was just wondering if my cmt causes shortness of breath as ive just been given a blue easy breath inhaler. Ive been getting out of breath alot and my gp has given me a inhaler which ive only had a few days but is helping me .
Gotta go back and gotta have a chest xray although will they find anything as cmt is not a condition that alot of doctors know much about?
I do not think that CMT could effect your breathing but, I would definitely ask your neurologist.
my sister has a swallowing problems an feels like your breathing an swallowing she can't clear throat enough or properly due to it feeling like lungs Are small and has a problem with her diafram ( not sure if that how it's spelt )
Hi I'm Jealous One from Australia. I have type 2 neuropathy and I feel it affects my breathing. I get short of breath only on exertion. It doesn't get very bad. I don't need asthma medication. It always goes back to normal once I rest. I thought CMT affected the muscles of the diaphragm. I guess CMT affects everyone differently. I don't know if my breathing will get worse as my disease develops. I hope this helps.
Hi, Julie J,
Like Jealousone I have always got out of breath on exertion. For a few years I went 3 miles to school by bicycle (because it was "Good For Me") and always arrived tired and out of breath. In the days when I could run for a bus, I would be panting and gasping like mad when I climbed on. It was just normal as far as I was concerned.
When I thought about it I came to the conclusion I was simply an extremely inefficient machine and used a huge amount of energy to create a great deal of heat and very little forward momentum. Later I used to say I felt "like a double decker bus with the engine of a lawn mower". This was before I knew anything about CMT, which was formally diagnosed only in my 60s.
I have problems with my voice (had to give up choral singing which I loved) and have had occasional terrifying episodes of laryngospasm, which were originally almost certainly misdiagnosed as "silent reflux", and which have subsequently been more convincingly attributed to "possibly/probably CMT"
But I have fortunately never needed any medical aid for breathing.
Best of luck with the chest x-ray. I suppose if , hopefully it reveals nothing, then at least that will be some nasty things eliminated...
Thank you for the reply its nice to see im not alone and really appreciate the support. Good health to you and all cmt ers 😁
I have also had to give up choral singing which I loved because of cmt. I was given an inhaler with 3 different types of medication but they all disagreed with me. I am due to see a neurologist. The most scary is a nightmare that something is stuck in my throat and I'm drowning. Immediate panic causes me to wake, 'jump out of bed' and consequently fall all over the place! cmt is not made for speedy exits from a prone position!
Hi Jazmina, the 'dream' you describe sounds very much like sleep apnoea, which I am convinced is one of the CMT side-effects. I have type 1a CMT and remember waking from similar dreams. My wife said I was regularly waking momentarily, gasping for breath, and badgered me to go for tests. The sleep consultant said I was unlikely to have SA due to my slim(ish) build and general fitness. They tend to associate it with people who are unfit and overweight. It turned out I had it very badly. I have been using a CPAP machine at night for over 10 years and have no SA incidents. It's important to get tested as, apart from making you tired during the day, SA puts a huge strain on the heart and can lead to strokes and heart attacks. I believe it killed my father who had CMT and died in his early 60s from a massive stroke. Because my mother had died years earlier there was nobody to warn him if, as I suspect, he had SA. Hope you get it sorted whatever the cause.
These are just some of the things you can have with CMT that sometimes aren't on the websites.
Diaphragmatic Weakness
Respiratory Dysfunction
Sensory Hearing Loss
Quality of Sleep
Pain in Lower and Upper Extremities
TMD
Bruxism
Scoliosis
Tremors
Oral facial muscles
Compromised Chewing
and Paresis of the vocal cords.
There isn't enough research yet to determine what exactly it means to have CMT my Dr. explained it like this. It's mostly a muscle deterioration of the upper and lower extremities but you have muscles all over your body and they aren't sure but can probably take a guess that it wouldn't just be muscles and legs. I am the 2nd generation and my daughter the 3rd. All 3 generations have different symptoms and started at a different age. I hope this helps.
Thank you that does make things more clearly. We all have different symptoms i guess just makes me feel like im not alone😁
An interesting list Jilybeans , thanks for posting. Another possible side-effect is bradycardia (slow heart rate). I have type 1a CMT and a resting heart rate around 40 bpm (60-70 is 'normal'). It doesn't seem to cause me any perceivable problems, even when exercising. I saw a cardiologist who put it down to fitness, but I not convinced. I'm reasonably fit for a 64 year old but certainly no athlete and never have been. I'd be interested to hear if any other CMT sufferers have this condition. Regards Malcolm
Actually my daughter has CMT also. She has a slow heart rate somewhere between 47-56 at any given time. She was recently in the hospital for a kidney problem and they were very concerned until i told them that she always has a low heart rate. I don't know if it's CMT related or not but she's never had a problem.
Jill
I have problems with hyperventilating, I have been given a machine to aide my breathing which I use at night, to help me feel more awake in the day. And as I wake up groggy and with a headaches. Early days but I hope it will help. There are so many variations of symptoms, ask gp to be refer you to a respiratory doctor. I was given a inhaler but it didn't help and can increase your heart rate.
Hi there. CMT can definitely cause diaphragm weakness but this rarely causes breathlessness. It's much more likely purely to be down to being very unfit!
Weakness caused by the diaphragm manifests as carbon dioxide retention at night, when you're lying flat, resulting in morning headaches (as someone else has mentioned here). This can be easily treated by a night time ventilator, which sounds scary but really isn't.
Inhalers are highly unlikely to help, unless you have also been diagnosed with some other breathing condition.
Just be really careful NOT to blame everything on your CMT, as you could be ignoring a treatable problem.
What an unhelpful and over generalised comment. What right have you to call me, and many others, very unfit?
When did i say u are unfit i was thanking you for taking the time for replying as this cmt is very different with many others!! Wont bother thanking you but i dont understand why ive offended you
I think she was responding to karencmt person. I am quite fit and I have breathing problems and I as well have very low blood pressure and always have under 50 pulse rate. Cmt can cause your autonomic nervous dysfunction. This is one web site and there is many more. ncbi.nlm.nih.gov/m/pubmed/1...
I think there is a mistake, Julie. Sorry about my part in it however it happened. The fact is I replied, I thought, to Karen from cmt, with her remark about being unfit. Please don't be upset as there is no offence intended, in fact I do not know how the post arrived at your doorstep, so to speak.
There are definite links between CMT and breathing. Under your diaphragm is a phrenic nerve which can be damaged by CMT. This can cause respiratory problems at night and during the day. We also have peripheral nerves near our lungs which can atrophy and cause breathlessness. I was diagnosed for years With asthma and have doctors give me a variety of Inhalers and treatments but was told in my 30s that my lungs are smaller than they should be for a woman who is in shape and doesn't smoke. I was. Recently diagnosed with vocal chord dysfunction and respiratory disease. They are both attributed to my CMT. I'd recommend you see a pulmonolgist who is familiar with neurological diseases and get a full pulmonary function test. They can clarify if you have asthma or if it's CMT related. And hang in there. Breathing is necessary but there's a lot of things that can help once you pin down the cause.
Wow thats so helpfull and my doctors going to refere me for more tests so thank you its very helpfull as i now know its probably cmt. 😁
Hi all - CMT is not a stand alone condition - many 'new symptoms' posted here on CMT posts are very relevant to Thyroid conditions also. May I ask you all look at the .Thyroid UK.org forum on HU, find their Petition re proper medication and if you agree, sign it as well and pass on to friends family for their support.
More recently we are hearing about the increased burden on the NHS and the fact that many helpful prescribed medications are to be withdrawn. Leaving the public potentially to self medicate without proper medical advice. Damned dangerous and very irresponsible of the Government and N.I.C.E.
Hi, I'll just add my 2 cents worth here. Since CMT is hereditary, I have obviously had it all my life (I'm now 66 years old). My mother had it but they called it Polio. She died at age 55 from a heart condition (not connected to CMT) but she never new the truth. Many others in my extendd family have it also but, like many others, were told they were just clumsey or wanted attention or diagnosed as hypocondriacs.
Same old story but I was always clumsey and the slowest runner on my high school football team. However, I still had no inkling I had CMT. I even had a 6 year career in the US Navy untill I started having trouble climbing up and down ship's ladders. The Nave diagnosed a "knee" problem and gave me a medical discharge.
It wasn't untill my oldest dughter was having physical problems in elementary school (She was 8 yeays old at the time and I was about 30) that the school sent her to a series of doctors to find the problem. A neuologist at Massachusetts General Hospital finally diagnosed her with CMT II. By this time, I was also having significant problems with loss of sensation in my hands and feet/legs but her diagnosis certainly explained my difficulties as well as my mother, grandfather, and several uncles.
As for shortness of breath, this is definately related to the CMT. As explained to me by some of the leading neurologists at Mass General, the CMY damages the phrenic nerve. This is a nerve that originates in the neck and passes down between the lung and heart to reach the diaphragm. It is important for breathing, as it passes motor information to the diaphragm and receives sensory information from it. If it is damaged, the diaphragm doesn't work. I personally, mut use a 4 liter flow of oxygen and use a Bi-Pap (dual Positave Air Pressure) machine to help me breathe.
I've gone on long enough here for now but just know you aren't alone. As has been noted elsewhere, CMT progresse slowly but it is a very destructive and insideous disease.
Good luck t you.
Went to the pulmonologist yesterday and told him I had been diagnosed with CMT. He said he knew it was something neurological causing my shortness of breath. He had me order a Phillips Respironics Threshold IMT to exercise my lungs. He said I had child like lungs supporting an adult.
My pulmonologist told me that I have COPD. I am very out of breath if I even get up from a chair or take 4 or 5 steps with my walker. My air intake being still is 93 and moving it goes down to 82. No one has ever told me that this goes with CMT, but I'm beginning to believe so. Sit down for several minutes if you can, and the out of breath does go away. I'm a young 80 and have also had aFib, so my heart dr. put in a pacemaker/defibrillator to stop the Afib., but it does nothing for my being out of breath. I do have a breath inhaler and oxygen that both help for a short time fix. I inherited the CMT from my Mother about 10 years ago. You might also watch for loss of hearing. I read lips for years before I realized what I was doing! It's one step at a time, and give yourself permission to slow down.
I am in the process of seeing a respiratory consultant for results of making function test and for possible sleep apnea . The diaphragm can be involved in CM T due to the phrenic nerve being a long nerve.
If I have to lie back in a dentist chair I inhale normally but exhaling is juddering.
Julie, my doctor sent me to a pulmonologist. CMT affects your long nerves. Nerves to feet, hands & diaphram. Pulmonologist ordered a sleep study and a respiratory function test. My sleep study showed I have sleep apnea. In other words I quit breating in my sleep. He ordered a CPAP machine for sleep. The respiratory function test showed 84% lung capacity. This was last year. Just a few weeks ago I saw my neurologist at the university who diagnosed me with CMT. I told her about waking up with morning headaches which eventually would go away and also about feelings of my throat closing. She ordered another respiratory function test & my breathing funtion was down to 64%. She ordered a ventilator to take the place of the CPAP. IT is wonderful. No morning headaches or throat closing. The electric company will tag my meter & account for prioity power restoration although the machine does have. 6 hour battery back up. See a pulmonary specialist. You will find it worth your time and good for your health. I have rheumatoid arthritis & see a specialist for that. All doctors know of my conditions. It's best that way. Even my dentist & dermatologist are aware. So many conditions overlap.
Thank you I will tell my doctor, although ive told him when I lie flat i get this shortness of breath tight feeling and an irritating cough.flat on my back is worse. Thank you though 😁
Yes, CMT affects your long nerves. To the feet, the hands & the phrenic nerve which goes to your diaphragm. See a pulmonary specialist. I had the same shortness of breath problem. Inhalers don't do the trick. I was tested for sleep apnea & given a pulmonary function test. This will answer many questions for you. I won't tell you how mine turned out because everyone is different but my breathing and overall well being is much better. I don't have as much fatigue. Be kind to yourself.
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