Since I Seem To Have The Most Experience, It Is Time To Answer Some Posts
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.