Anyone have any upper/lower respiratory problems?

    • April 1, 2017 at 1:42 pm

      I had gallbladder surgery in Aug 2015 and 1 week later, numbness, paralysis, incontinence and terrible back pain. After LP, dx’d with GBS. Hospitalized and had PE x 8 days. Lasted about a week and started again. Had nerve conduction studies and was dx’d with CIDP. All this time, also struggled with sinus infections, which I had never had before along with lower respiratory symptoms such as continues coughing. In 2016 I had 2 sinus surgeries and still the sinus and lung problems hang on. I go to ENT doc, Pulmonary doc and Neurologist – a vicious circle. It seems that no one has an answer and not one of these docs talks to the other. I feel that the CIDP is OK with monthly IVIG. I do have to limit my exertion during the day and take about an hour a day and rest.

      My question to you is: Does anyone have similar symptoms? If so, do you feel it is due to the CIDP or just my bad luck to have this along with CIDP. Second question: Does anyone go to a Mayo doctor for CIDP and if so, who? Thank you for any help you could give me.

    • April 1, 2017 at 7:18 pm


      I’ll just relate my experience, nothing as serious as yours breathing wise.

      Back in July/August of 2016 when I think the CIPD was just beginning to present itself. I had shortness of breath when I exerted myself. I have asthma, so the doc added an extra dosage. It continued until I started steroid treatments to treat the CIDP.

      Since February, I’ve either have had constant allergies or sinus. My nose runs constantly, with post nasal drip that gives me this annoying little cough that seems to like to irritate all the weakened muscles in my back.

      I have had allergies all my life, but usually a Zyrtec will take care of it. This seems different. Very persistent, as if my immune system is run down–which it is, since muscle weakness has returned I have a run of 5 straight days of IVIG starting Monday.

      Is it related to CIDP? Maybe since our immune systems are compromised, we get these low grade annoyances more easily?


    • April 27, 2017 at 9:21 am

      I was diagnosed with CIDP right after Thanksgiving 2016. It took forever to get the okay for IVig, but I finally got it March 29- April 3. I have had a horrible time with my sinuses going back to the end of January, being treated with Claritin, Mucenix and a five day round of antibiotics. The mucus is so bad I have had to sleep almost sitting up.

      I cannot walk, so I was hospitalized for the IVig. While I was there, it was decided to do a spinal tap to hopefully confirm the CIDP diagnosis to make my insurance happy. Before doing the spinal tap, my neuro requested a brain CT which showed severe sinus disease.”

      My neuro decided to follow up with five days of Prednisone last week (April 19-23) and I noticed that the sinuses got better. But I need to add that I take eye drops and I believe that they are what is irritating my sinuses and am taking that up with my eye doc today.

      But I think that CIDP is caused because of the immune reaction. The immune system is in overdrive which probably makes allergies even worse, or it could be the allergies that make the CIDP worse.

      I started having problems about the time that I have a massive amount of dental work done, having my old mercury fillings removed. Since 1980, I have had a known sebere allergy to the mercury-based preservative Thimersol, which is used in vaccinations and eye drops. I have wondered if the dust from having the fillings removed caused my weakness.

      I was pretty weak bust still able to walk when I wound up in the hospital in September 2015. About five days into my stay, I lost the ability to walk, but nobody cared because I was being treated for a skin infection.

      It is a very long story about all that has happened since then, but I am in a nursing home now and still not able to walk, mostly due to a deformed right foot after having my ankle shattered when I tried to explain that I couldn’t walk but they insisted on me showing them.

      The Prednisone had helped with my strength the last few days, by my Physical Therapy was cut off two days into the Prednisone. I am battling to get it back. After 17 months and just finally getting treatment, I am tired and frustrated.

    • April 27, 2017 at 12:23 pm

      LMayberry and BryanF, I feel your frustration!! My sinuses are getting worse as is my breathing problem along with a constant, productive cough, which is causing a lot of fatigue. I was given inhalers and they don’t seem to be helping either. I saw a pulmonologist last week and he spent a lot of time with me. However, he said he didn’t have any data on the CIDP causing the upper/lower respiratory problems. Now, I’m scheduled for a bronchoscopy, heart echogram and another sinus surgery. At least he did a bunch of blood tests and they were normal except for one. It showed a Alpha 1 tryptisin level to be increased, for which I’m a carrier, which I didn’t know and have had all my life. Now, my question to him is — is this caused by CIDP; making it worse; increased because of IVIG or what? His nurse called me with these results, so I couldn’t get any definitive answers. By the way, I’m 67 years old. Therefore, I’m wondering if someone at MAYO clinic in Rochester would know about this??
      I’m fortunate that I still can walk, but fatigue very easily. Thank you for reading my post and as I said, I feel your frustration!!! Hopefully I can get some answers soon. This is very depressing to me.