Does any one have breathing problems an swallowing problems

[angelskylight]

Does any one have breathing problems an swallowing problems an feels like your breathing an swallowing through a straw i have noticed this over the last through weeks can't clear throat enough or properly due to it feeling like lungs are size of a straw thanks

[CMTerSam Volunteer]

I have a small amount of breathing issues, more so when laid flat. Tests at hospital recently confirmed this and they said it was due to weakening of the diaphragm.

[angelskylight]

thanks seeing my doctor this week previously refused to help me

[Hidden]

I do have asthma but nothing like you describe. I am having toe surgery soon and my podiatrist has asked me to get my diaphragm checked, he said its important to know because of sedation and anesthetics. Anyone come across this before ?

[lowther1]

i have a paralysed diaphragm so only have full use of one lung and partial the other, went to doc originally complaining of shortness of breath, a chest xray showed a raised lung, but l only discovered it because i saw my result accidently whilst visiting the nurse, doc had told me result was fine, l went back to doc with information i had got from net about the diaphragm. He sent me for an ultra scan which diagnosed the paralysis, so he couldnt ignore it, am now under a thoraxic consultant, so go back to the doc or even another for referral. There is nothing in the way of treatment just keeping an eye for changes, but the only thing you can do is keep going back to your doc and insisting on help.Most docs dont understand cmt.

[curlyburli]

I cannot breath lying flat, also I choke very easily.

[beachwine in reply to curlyburli]

While hospitalized for bronchitis I was given a swallow study because of GERD & choking. Suspected that food was going down trachea, not always esophagus. I can choke on my own saliva. Cut food in small pieces, try to have wet meals (gravy, sauces etc.) for ease of swallowing. Eat slowly, drinking liquid between every few bites. Everyone else at the table may be through with their meal, but trust me slow is best. Do NOT drink with straw as large gulps are choking hazard. My most expensive prescription/reccome dation was to buy a bed that elevates the head. My husband did this for me before I was dismissed from the hospital so there was no getting used to sleeping at the recomended 45 degree angle. Pillows will NOT work. To start at a lower angle Amazon has an angle wedge. I also have sleep apnea & sleep with a non-invasive ventilator. But making these changes have made a wonderful difference in my sleep, choking, gerd, breathing & life. Good luck to you.

[Whiterose]

Hi Angel, yes I have throat problems as sometimes food has gone down the wrong tube. I think this may have created Chronic Pulmonary Obstructive Disease in my lungs. Smoking in the past and passive smoking exacerbated this condition for me too. Plus I suffer with chronic sinusitis. So I can understand the difficulties with clearing your throat. I have found fresh Pinapple juice and Soda water (half of each) refreshing to drink and has helped my respitory system as well as the throat. Plus drink lots of water too.. A speech therapist may help too, they are able to give you exercises to aid the throat, breath and speech, which is all linked to the use of the diaphram. Hope this helps.

[John1945]

Hello Angel Skylight ....

I suffer from CMT type 1a since my birth 67 years ago: I was eventually diagnosed by my neurologist in 1998:

I fully believe that CMT, and particularly it's muscle wasting process is the cause of many of CMT sufferer's other problems: In 2004 I was having trouble getting air into my lungs, and breathing difficulties, I was then referred to an ENT Consultant to explore the possibility of widening my airways-voice box (which are all held open by our muscles):

The day before my operation which was then cancelled due to me having high B.P. I was sent to see a Cardiologist Consultant, who easily diagnosed that I was suffering from "heart-failure", and my problems were due to my heart not pumping enough oxygenated blood, thus my lungs, and respiratory systems were not working to their full capacity: New medication speeded up my heart rate, and as a result all is now well: Also remember that your arteries / blood vessels are also held open by your muscles ! So if your CMT muscles are weak/damaged, alway mention this to your health professional:

Good luck to you ....

John .... (Glasgow)

[SallyH_NCCMT in reply to John1945]

It never made sense to me before now why I've had issues recently choking while eating-swallowing-sometimes. I also noticed over the past few years a gradual decline in my ability to sing. I can no longer hit notes I used to and cannot sustain the note for as long. I thought CMT only impacted peripheral nerves; not breathing too!

[angelskylight]

thanks sounds like what i have will see gp about it an ask to refer me to cardiologist for tests as my drs gps no nothing about cmt an often dont help me

[angelskylight]

my diaphragm an lungs seem to be lacking air do any of you use breathing machines or oxygen masks etc i have had cmt type 1a since birth now 35

[GrannyMaz in reply to angelskylight]

I use a Bipap, i cannot breathe out against a Cpap so when you talk to your Dr make sure they know this can be a problem with CMT - I have type 1A too..

[beachwine in reply to GrannyMaz]

Granny, my neurologist took me off CPAP and put me on a non invasive ventilator for that very reason. The ventilator manages your carbon dioxide not your oxygen. I sleep so much better, no morning headaches and have much more energy. CMT affects your diaphragm not your lungs. Check with your neurologist or pulmonologist about a ventilator. Wonderful difference.

[philomena in reply to angelskylight]

Hi my mum has cmt 1a and is very bad with her chest she can not lie flat last time she tried blood vessels burst in her eye , she also has heart failure and was reviving oxygen in hospital and it helped they sent her home with none but every doctors keep telling me it don't affect your breathing. Been transferred to another hospital now who seem to be booking oxygen and putting tests and referrals in place so fingers crossed bit I have read it can affect your chest as well.

[CMTUnitedKindom Partner]

I do know people (including Lisa Welsh, our Chairman) who use BiPap ventilators to aid breathing at night - Lisa's diaphragm is almost completely paralysed, and she also has a paralysed vocal cord.

They are a very successful, non-invasive way of assisting the breathing at night - nothing scary about them at all - Lisa loves hers, it's given her a new lease of life!

Extra oxygen won't help, and is not recommended (I've read a research paper on the subject somewhere).

Regarding the heart function, muscles are only used to keep the blood flow pumping through the extremities - that's why many people have cold legs or sometimes swelling. The actual heart muscle itself, and the nerves that operate it, are entirely unique in the body, and made up of entirely different structures than the muscle and nerve anywhere else in the body, and as such is completely unaffected by CMT - regardless of what some people may read on Facebook or other internet sites. This was confirmed to me by Professor Mary Reilly, so please do not be worried about your heart! She also told me that the nerves to other internal organs such as the liver, kidneys and stomach are protected from CMT-related problems by a specific genetic component designed to stop myelin degeneration of these nerves.

Karen

[angelskylight in reply to CMTUnitedKindom]

thanks i having chest an lung xray to see if there any change an ask dr anout neurologist referral againas they didnt do it wasted 7 months

[GrannyMaz in reply to CMTUnitedKindom]

If you have a paralysed diaphragm it can affect the heart, in anyone not just those who have CMT..

[GrannyMaz]

Yes, I have breathing problems, my phrenic nerves are affected now, and suddenly now I am having swallowing problems, I am on a Bipap at night for the breathing, and my diaphragm is paralysed and when last measured only working at 48% approx, so definitely get it checked because it can cause heart problems..

[CMTSECRETS]

Yes it’s due to WEAKENING OF BULBAR FUNCTION

[Ruspizza01]

I have CMT 2- c I'm at 45 percent lung usage and I use a b pap machine at night or anytime I lay down. I also started having trouble swallowing my food. I've had my throat stretched several times with no response. Botox did help for about a month.one doctor said it was caused by CMT. One says it's not

[GrannyMaz in reply to Ruspizza01]

Yes swallowing problems go with CMT, I have swallowing problems too, they come for a while then I get a break, lots of CMTers complain of this, maybe Google swallowing and CMT and see what medical articles are out there, I know there are some, lets face it, in CMT all the nerves outside the brain and spinal cord ca be affected... It makes me mad that Drs who deal with CMT patients don't know this <3 HUGS <3