Hello everyone,
Visited my Neuro last week, and was told that she noticed weakness in my neck muscles, different from my last recheck. I also have noticed in the last few months, weak, sore neck. And at least once or twice per week choking when I swallow my saliva. Then losing my breath, and waiting about 30 seconds to a minute to get my breath back. Neuro is concerned about risk of esophageal pneumonia. My Cidp diagnosis was in April 2010. At Mayo. Mainly affecting my hands, and some feet issues with shocks etc. certainly peaks and valleys. I get ivig every two weeks. Anyone had similar experiences? I work full time and rarely complain. But I’m now very concerned about this. I have been able to adapt with my right side high weakness, but throat and neck??? New one for me.
I should mention I have been told I have the Lewis Sumner variant of CIDP. Y fatigue is certainly nailing me lately as well. I guess in a rough patch.
I'm sorry that I have no words of advice; but hope to encourage you in that you are not alone. I too have terrible neck/back pain/weakness, some trouble swallowing. I'm not a Dr but would think esophageal pneumonia would be caused by acid reflux in the esophagus - very dangerous and will shut down your wind pipe and make you think you are dying (which in fact, you could be). I keep liquid antiacide by the bed and take a dose before bed and "a swig" on the occasions I have acid reflux during the night. You may find it will help tl sleep with your head/back elevated. Again, I'm not a Dr; this is my own experience and how I deal with it. You may have an entirely different condition. Be blessed!