I have shortness of breath that effects only one lung, my left lung. I've assumed it was CIDP, and brought about by demeylinaiton of the phernic nerve, that being the common denominator with CIDP.
Do you have SOB in one lung, both lungs, and is it mediated by any CIDP treatment? After IvIg, I have strong breathing until I relapse, if I relapse.
I swim 2 miles, regardless of the state of my lungs, however my wonky left lung is really a burden on the system when I am in relapse... as is my incurable foot drop from CIDP, as are my stiff muscles, but I swim with those problems and I oftentimes seem to swim over the pain/stiffness and feel relaxed, (self cured or just exercised into pure fatigue? )
My new neuro has me scheduled with a pulmanologist to determine if I have a collapsed lung?
But, I told him repeatedly that the IvIG treatment eliminates the shortness of breath, the problem in the left lung, etc.
What should I do? He is the only neuro (for my new HMO) on Maui. It is their dime, my co-pay is $15, but I wonder about this guy. He says he's had CIDP patients, but so have my past six neurologists... but this being a rare disease, and they are all under 45, so the math is wonky to me! I'm thinking I'm getting the standard answer when asking about medical experience and neuro knowledge. It is a rare disease!
I think Florida may be the answer!!!