After I watched this I went in search of some answers over the very topic of why people might need IVIG for so long. With this Dr., himself saying the CIDP was in our Bone Marrow, Spleen , Lymph Nodes, Thymus..I questioned the magic of IVIG’s ability to rid these extremely important parts of our bodies so quickly. In my research and in my opinion only because I am not a doctor..I found when researching other reasons that IVIG is used..some of our bodies have a defect in producing antibodies..thus rendering us susceptible to multiple autoimmune diseases. With that being said..once you stop the IVIG’s delivery of the good antibodies..our bodies will then again produce the defective ones, thus causing us to need the constant supply of the good antibodies. Again this is my research and my opinion!

I sit here with my legs, arms, shaking and stinging..thinking how fortunate I am that I can still use my hands & legs. But, scared to death that as I sit here waiting on someone to approve a co-pay assistance for my IVIG treatments..things seem to be getting worse. Not sure if it is our extremely cold weather or just normal progression of the CIDP. If some others would shed some light on how their disease progressed it would be greatly appreciated!

My pain is more intense in my hips & thighs when the temps drop suddenly. I am in TX..so that happens quite often. Prayers for you!

I get a rash like that after taking a hot bath or getting really hot..but, I have discoid lupus..so they say! You might ask about that..some things creep in when we start doing autoimmune treatments!