Reply To: Advice please

January 15, 2008 at 4:28 pm

Hi Hope,

We have been where you are. Kevin went three months with persistent fatigue and on again off again weakness. This is what was confusing, that he would sporadically get stronger and then weaker. He also did retain his reflexes for quite a while. We too were told the breathing issue was anxiety. I tend to believe there was some truth in that dx, as he still periodically gets it. In fact he did yesterday and today after a delayed migrane from this weekends treatments. In any event, after trying rest, and a repeat ncv/emg, which incidentally was NOT worse than the original, we finally decided on more ivig.

If I remember correctly, you have never received treatment from the onset, is this true? Is it possible that the autoantibody production has never been fully stopped and you are still producing them. Perhaps you can convince the Dr. to try a couple of 5 day loading doses just to see if there is a difference. At the very least if it is cidp, it will stop further progression. At the very worst, you have cost the insurance co. some money. Oh well, I am sure you have paid 100 times over throughout the years.

Maybe you could even set up treatment where you work as an inspiration or to connect with the children you work with. I HOPE you can get some answers soon so that you can return to the work you love. WITH ivig if it is cidp, there is more than HOPE, there is life pretty close to how it was. Physically Kevin is near where he was! Emotionally, I will not lie, it is difficult for him to give up one week a month out of his life. We are learning to cope, everyday. He is learning as am I that this is a part of our lives. The last 2 days have been extremely difficult for me, I cannot shake the thought of what would we be doing this very instant if cidp never came into our life. But we have to HOPE that one day there will be a cure or we will beat it!

Best wishes to you!
Dawn Kevies mom