I am sorry to hear that doctors believe that there is not a link between cidp and breathing. CIDP is a form of GBS. They will admit that. Sometimes there is not a real strong line between the two. When my daughter had what they thought was GBS, she had trouble swallowing liquids and had to be put on thickened liquids as it had gotten that far up. Sounds like GBS doesn’t it? Guess what she is cidp now. She completely had to learn to swallow again, sit up, crawl and eventually walk again. Sounds like GBS and not cidp. There is a very fine line sometimes!!!!!!! Read the recent post by Julie Ann’s mom for more.

J.

It’s a very real possibility that CIDP is involved or the cause. PLEASE get don’t delay in getting your breathing difficulty diagnosed by someone who knows and has treated CIDP/CIDP. If necessary seek another neurologist.

I’m praying for you.

Gary

Definitely could be CIDP – at my worst all the intercostal muscles and half my diaphragm were paralyzed, not to mention that I could not speak above a very breathy whisper. If this is getting worse you should try to get some kind of treatment, IVIg?, as well as find a doctor who is familiar with this aspect of CIDP. It’s not common but not as rare as most neurologists seem to believe… there are many of us here who have had problems breathing and speaking.

You need to contact your dr immediately. Do NOT mess around with breathing difficulties!

The treatments the dr has prescribed are not working so you need to contact him/her immediately & let him/her know you are still having difficulty & are concerned.

I know it has to be scary when it affects your breathing.

Kelly

J, your pulmonologist is right. And if your neurologist doesn’t realize that YOU NEED ANOTHER NEUROLOGIST. You need to be correctly treated for CIDP.

Gary

its so weird I was just logging on to post this topic then it was already right there staring at me in the face. I am in no mans land right now but I think the people of this sight might have insight on this symptom. I keep having problems where I cant push the air out of my lungs. it stops ubruptly just below where I exhale and inhale. my chest feels tight and I cant relax my breathing because its like there is not enough capacity to bring my breath down to a relaxed place. in other words I am breathing higher up in my chest than what feels like my normal relaxed breathing place because that no longer exsits. I know it sounds weird but all the xanax in the world is not taking this away. on those days I wake up repeatedly with my heart racing and Im in a panic. It sucks because I am climbing stairs like a pro, I am taking way less pain meds, I feel strong and asymptomatic with the exception this and some horrible left flank pain that hurts when I eat. but all my organ functions are normal.

J.

CIDP can affect the diaphragm muscles that control breathing. My doctors told me that if my breathing or swallowing were affected I should contact my neurologist immediately.

Don’t want to scare you, but you should be very aggressive in making sure this symptom is under control.

Gary

This was one of the symptoms that got me serious about finding out what was going on inside my body. While I’m still in the diagnosis stage, I have had breathing difficulty that I believe is related to whatever is going on neurologically in my body.

Mine was very similar to what Tara describes: affected my bronchial (upper) airways. Couldn’t exhale completely. Seems to increase when my other symptoms increase. My doctors (GP’s) couldn’t find any congestion in my lungs or other reasons for it; no wheezing, etc. They finally decided to call it “Parainfluenza” once, and an Adenovirus the second time, but I honestly believe these were diagnoses of convenience. They couldn’t find anything else, so they went with the most general diagnosis possible. Para-influenza, I was told, is the adult version of Croup, and can effect exhalation.

So, yes, I’ve had breathing difficulty. Prednisone seemed to help.

gary is right. its funny how all of us are so used to sitting around and tolerateing symptoms that we dont seek help when a serious one arises. I wouldnt recognize an emergency if It knocked me on the floor. what is an emergency? paralysis? difficulty breathing? chest pains and arythmia? orthostatic hypotension? apnea?. How do we even begin to sort out what is something to discuss at our next appointment and something to go to the ER for when this is day to day stuff? I guess that is a good question to ask our doctors when we see them. What is an emergency?

Get thee to an emergency room or to a pulmonary doctor! GBS and CIDP can and DO affect the respiratory functions!!!! This is what you’ve been experiencing. While it could be something other than CIDP, It mite just be a new dimension to your CIDP! And this is one with really serious potential consequences in the long run!
Because we are approaching a ‘holiday’ tho? Contact your GP and throw it into their court! As we all know, not much gets done other than blood work over a ‘holiday weekend’. And it always seems as if we get problems just then! Durn it! [And, many other words not fit to print]
Get a little peace of mind and call tomorrow morning and get the medical MILL rolling in your favor! Being proactive NOW is far better than coming in unconscious? Docs will know that you have been having problems and can zero in better on the tests to be done ASAP. Whatever that, for now? Promise that you won’t panic? I know you want to? But save your energy and let the ‘pros’ do the worrying’.
Heaps of hugs and hope for the interim tho…and DO keep us all up to date on what is happening!

My breathing is like trying to inhale heavy air. Its not a panic attack as I’m calm. I’m having difficulty fully breathing in and exhaling. Sometimes have to concentrate to do it.

“WithHope” has written excellent descriptions about the breathing issue with CIDP. There was a suggestion to strengthen lungs/diaphragm muscles using a respiratory therapist breathing tube used in hospitals.
Great older posts on this. Do look into them.

I never linked the two together………. I spoke to my former Neuro about the shortness of breath years ago and was told that it wasn’t a big concern. I describe it as trying to breathe through a thick blanket. It comes and goes and when I have problems breathing, I use my daughter’s inhaler and take clonapin. It doesn’t help the breathing but it relaxes me enough to get through it until I can ignore it again……… I will bring this up to my new Neurologist this week (I have an appt) and hope he takes it a little more seriuosly than the last one.
I agree with not knowing what is an emergancy or not. How would my husband know that if I can’t be awakened after sleeping for 20 hours straight, that he should call my doctor or take me to an E.R? We are so used to my symptoms coming and going, hitting me lightly or like a ton of bricks, that we just coast by until my body adjust to the new onset of symptoms, and learn to live with them.It’s almost like giving up the fight…….. We are so tired of adjusting and every day is started with the ultimate question: Can I get out of bed today???????

I have shortness of breath and chest pains so severe I think I am having a heart attack. I now have a pulmonary doctor and he is very understanding about the damage done to the nerves in the lungs. I have also had pneumonia twice since May. I will be having a broncosophy (?) in Jan to see if it is bacterial. Is so I will be put on a dose of antibiotics once a month for a week to stop the bacteria. It is my understanding that this is also common with CIDP lungs.

I just bought a more expensive Honeywell air purifier, and it has really helped with some of these similiar issues….. It has an optional shut off for the ionizer, which I’m told can cause probs for some people..

SO I go to the ER because my breathing problem is becoming irritating. I am not paniced because I am getting enough O2 and I am able to pull in air. once again it is forced air that is the problem. My blood oxygen was 100%, my PH was better than the respiratory therapist. they did a normal X ray and the technician told me I need ask the doctor for an inspiration/expiration xray so I did and my diaphram was normal. On an asthma expiration meter I should be able to blow out 490 but was only able to blow 350. I told the doctor my symptoms including the fact that I was also experiencing horrible flank pain and that the neuro at scripps was looking at many things one of which was MG. We dicussed the possibility of an MG crisis but then ultimately because of my unremarkable results was sent home with the asthma expiration meter and he told me if it gets below 300, to come in.

I went home to my computer because I know the doctors are missing something. this is not imaginary. I looked up muscles that control breathing and found that diaphrams are mostly what help us pull air in. air going out is automaticaly caused by the elasticity in our lungs snaping back. volintarily pushing air out of our lungs is a function of the intercostal muscles. they are attached to ones ribs and possibly, if one were to have flank pain located in the place I have it, might be due to my intercostal muscles getting there @$& kicked. Right now I am chilling with the asthma meter, taking daily chart if the line starts to go down, then I know things are going wrong. It seems to be pretty steady right now.

I dont know how one would even test those muscles. I do suggest that if you are experiencing the same as I am and getting normal tests to at least keep a asthma meter to blow into and chart to see if things are escalating.

Hi J. Dennison,
Okay-first you need to see if your CIDP has hit your autonomic system.
It is a very easy and quick test performed in your neuro’s office. It is a skin biopsy. They numb an area of your thigh, then take two poke with two types of needles, then send the samples off to a lab. If the result is, “small fibre atrophy”, then most likely the CIDP has hit your autonomic system.
Google “autonomic system”, and you can see the different areas the CIDP can hit, all hitting the nerves controlling the different organs and systems.
My CIDP has hit almost all areas of my body, which is why I am dieing from the complications of the CIDP hitting my autonomic system. Every 4 to 5 months, it hits another part of my body. But, I do not mean to scare you–this has happened after years with this, and the normal protocol of treatments for CIDP failed for me.
Perhaps, I do not know what treatments you are receiving for CIDP, will put you into remission.
But, to talk about your breathing problems, one of the areas the CIDP can hit, is your phrenic nerve. This contols your diaphragm. Without the phrenic nerve working, you cannot get full inspirations/expirations. My status right now, is that I have VERY shallow breathing, must use a BiPap when I cannot breathe, and am on oxygen 24/7, as my O2 sats have gotten as low as 80.
My pulmonologist has told me that going on a respiartor is not too far off in my future. But, I do not mean to scare you–this is only because the protocol of treatments for CIDP has failed me, and I am on chemotherapy, (Cytoxan), which only slows down the prgression of the CIDP and failed to put it into remission, also failing with IVIG, Plasmaphereses, steroids, and immunosuppressants. You have not mentioned what you are on for treatments for your CIDP–I hope one will work for you to put you into remission.
—
As I mentioned, you need to see if it hit your autonomic system. If it has, and you are having the breathing problems, then you Primary Care Doctor, or your neuro, needs to send you to a Pulmonologist. Hopefully one that knows of CIDP, and the fact that it can hit your phrenic nerve. He should send you to the local ER or Respiratory Department, (mine sent me to the ER), to get about 6 or 7 different respiratory tests. It will also show your lung capacity, (mine is down to 43%). He will advise you after the tests, what should be done. You sound like you need a BiPap. Especially at night. Many people with CIDP get sleep apnea, (google that so you understand what that is).
If the CIDP has hit your phrenic nerve, breathing at night is worse, so you need to use the Bipap to help you breathe at night. It takes a little while to get use to it, but eventually you are able to sleep with it, and not wake up in the middle of the night because you cannot breathe.
If you cannot find a good Pulmonologist that understands this, there are special neuros that deals with sleep disorders–your neuro can also send you to one of those. They will do a sleep test on you, and test your breathing through your sleep. They will also recommend a Cpap or Bipap.
I gotta run–but listen to what I have said–I have been through all the above, and can attest to all I have said.
Good luck,
Ken
(KEDASO)

I can’t believe I missed this post first time around. Well, better late than never, maybe. I have had difficulty breathing for almost a year. Here is what I just wrote on my own thread:

“Well, after many months, I (sort of) have an answer.

After many visits to my family doctor and various specialists, my doctor finally ordered a high-contrast CT scan of my chest last October. It found “multiple bilateral pulmonary emboli.” That is, multiple blood clots in both lungs. I was rushed to the emergency room, put on powerful anti-clotting medicine (Lovenox), and kept in bed for three days. When I was allowed to get up, the shortness of breath was significantly better, but not gone. However, a repeat CT scan showed that the clots were completely gone. As a precaution, I was kept on Coumadin (so-called blood thinner) for six months.

My pulmonologist suggested that I was deconditioned, since there were no more clots to cause the problems, and recommended that I try to be more active, and become better conditioned. I tried to do that, but between the weakness from CIDP and shortness of breath, it was pretty hard to be active. And the breathing problems just did not get any better.

I went back to my pulmonologist, and he ordered some additional breathing tests. These showed that my smallest air passages were constricted. He called this a form of asthma, and recommended an Albuterol inhaler. It works very well: two puffs, and within minutes my breathing is much improved. So, I think his diagnosis of restricted air passages is correct.

Now, here’s the kicker: I was wondering what would have caused the asthma, which I have never had previously (I am 63). He had noticed on my chart that I was taking Imuran, and asked what that was for. When I told him it was for CIDP, he immediately responded by saying that autoimmune diseases are also known to cause asthma, by causing inflammation of the airways.

He went on to say that autoimmune can also cause blood clots. Since he now knows that I have CIDP, he wants me to stay on Coumadin until my neurologist is confident that my immune system is under control, because he is afraid that I will develop more blood clots. Of course, the time to get my immune system under control might be forever…

So, in summary, I am hearing that my immune system also caused problems with shortness of breath by causing blood clots to form in my lungs, and by triggering asthma.”

An additional comment: if you think there is any chance you have blood clots, get treatment [B]immediately.[/B] It can be life-threatening. My doctor told me that I was lucky that I didn’t just keel over.

I have had multiple clots in both lungs and I do take Coumadin for it. I don’t use an inhaler- but certainly will look into it. I do use C-pap machine at night. It definately helps alot. I don’t wake up gasping for air anymore, feel more rested during the day, and have increased alertness. I hope you all look into this condition if you are having trouble with breathing. The inhaler makes sense too. I notice when I am under stress, the breathing gets even harder. It is not a panic attack- had them years ago and I know the difference. It’s as though the air I am breathing cannot penetrate through.

Just a suggestion…Has anyone linked breathing difficulties to thyroid nodules, as has happened in my case? I was finding it increasingly hard to breathe. Investigation found nodules pressing against the oesophagus,removal of thyroid fixed the problem Evidently thyroid nodules are much more common in CIDP patients.

I’ve spent many days/nights unable to get air in and out. It feels like the nerves to my diaphragm aren’t working. I have to breathe “manually” and this is my most terrorizing symptom.

After years of having numbness in toes and muscle spasms/weakness in legs, I was told to get plenty of exercise and wear thick socks. The local doc thought I had Raynaud’s which causes spasms in the blood vessels. Then I developed asthma and chronic bronchitis which led me to see a pulmonologist in 2006. In his thorough exam he noticed some neurologic changes and referred me to a neurologist and I was eventually diagnosed with CIDP by another neurologist in 2010. From the discussions that I have read many of you were diagnosed with CIDP first then the respiratory problems began. To me the respiratory symptoms caused the docs to take notice and led to my diagnosis of CIDP. The progression of my CIDP has been very slow thus misdiagnosis along the way. Now I am on IVIG and have regained some of the strength and a slight increase in sensation. And guess what??? I have not had a bout with bronchitis since beginning treatment last summer. I do keep my asthma inhalor handy but have noticed that the need for it is farther apart. As a whole my breathing has improved dramatically.