Cough? Short of breath?

    • July 21, 2017 at 7:25 pm


      I hope everyone is doing well.

      I recently went to my Pulmnologist the other day. I was telling her about a cough I had for a bit. Now, I do have sleep apnea and she told me she really thinks it is the CIDP. I have been experiencing having a harder time catching my breath in this hot weather and just in general. Not in a crazy sense, but it is just harder.

      Anyone else experience this, and if so, what have you done?

      I am seeing a University of Pennsylvania Neurologist August 22nd and I was just looking for some experiences before then, because I’m a little concerned.

      She told me to mess with the settings on my CPAP machine and email her in a few days. I am doing that, and if not, she wants a chest X-RAY and to move from there.

      For some background, I tried two days of home IVIG and my blood pressure dropped to crazy low levels. I am following up with the Penn Neurologist to see what my next step is.


    • July 22, 2017 at 7:08 pm

      Last July, when I believe the very first signs of CIDP were emerging, I experienced shortness of breath upon exertion. I thought my asthma was acting up, but it turns out it was a symptom of the emerging disease.

      My first doctor treated me with prednisone, 60mg, so needless to say, my breathing improved greatly-along with all my back pain! 😉 Unfortunately, the steroids did nothing to help my CIDP.

      When I received my first round of IVIg in January, I think all signs of labored breathing vanished. It wasn’t until I had a relapse in late March that I experienced shortness of breath upon minor exertion again.

      Now that I am on monthly rounds of IVig (since April), the huffing and puffing has pretty much went away.

    • B
      July 26, 2017 at 12:00 am

      I often have breathing difficulties. Not so much shortness of breath as a repeated yawn reflex where I yawn, can’t get a satisfying breath and yawn repeatedly. It’s like my brain isn’t getting the message that I have enough air. And/or my muscles aren’t expanding my ribcage enough (like the “MS hug”).

      I too have low blood pressure that tanks during IVIG. Anytime I get below 90 systolic, my nurse has me stand up and she also stops the IVIG and pushes some saline for a while. My PCP also has me do “counter pressure maneuvers”. Basically tense up muscles in legs, feet, backside which pushes blood up to the brain.

    • July 26, 2017 at 8:14 pm

      I used to get SOB on mild exertion pre-DX, but that seems to have calmed and other tests e.g. cardiovascular showed nothing. Not long ago my neurologist did some type of pulmonary breathing test to establish a baseline. Said my numbers were good.

      My BP dropped kind of low on day 1 of IVIG but not had any repeat of that.

    • August 4, 2017 at 4:34 am

      Hey everyone,

      I am following up with my pulmnologist tomorrow because the cough hasn’t stopped, even with the C-PAP settings changed a few times. So, that’s step one.

      For the people who have had their blood pressure tank–the same thing happened to me, and I actually stopped IVIG because of it. I wonder if we just need to pump fluids if I decide to do it again.


    • August 6, 2017 at 5:45 am

      Yes, yes, YES! I have a chronic cough, shortness of breath (sometimes even just from talking) and inability sometimes to get a full breath – that yawn reflex that B spoke of. I was recently diagnosed with lung disease, but I definitely believe that the lung issues and CIDP are connected. Rheumatologist says yes, but neuro says no.

      Looking at the calendar in my head, I realized that my symptoms of CIDP, the chronic cough and shortness of breath all started around the same time. I wonder if the CIDP caused these lung issues from a mechanical standpoint (not being able to breath deeply because of CIDP) or if they are both part of the same auto-immune process. (I have been diagnosed with a few autoimmune diseases…Not that I have them all, but the doctors keep changing their minds.)

      Can’t wait to start IVig to see if my lung issues improve. I’m encouraged to hear that some people have found improvement.

      Am I allowed to ask you who you are seeing on the 22nd of August? I recently had a first visit at U of P for CIDP.

      Wishing you healing on all fronts. God bless you.

    • August 22, 2017 at 5:45 am


      I am seeing Doctor Ellman today, actually. I will post a follow up.

      My pulmnologist thinks it might be GERD now. I really don’t know about the coughing! When I can afford some of the medicine she wants me to get, if it helps the cough, that will tell if it’s something else or GERD.

      These things are certainly a process!