Reply To: Anyone have any upper/lower respiratory problems?

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.