Reply To: Droopy Face!
bny, these are just opinions and thoughts, so take them for what they are, only you know your body and gut feelings best. So..Regarding the ncv/emg….I forgot, have you had a skin punch or nerve biopsy? Some people do have a normal ncv/emg and still have cidp dx. It just is not typical the way you present. Some is, some not. Protein level in spinal yes, weakness yes, eyes yes if miller fisher. starting at knee, no. response to ivig, sometimes, but sometimes you don’t feel you respond. Unfortunately everyone does not have a textbook presentation of symptoms of cidp. You seem to fall into that category.
Is it possible for you to go to Mayo, during a vacation time or something? just to get a concrete dx? The way you respond to ivig makes me think cidp like us initially, but lately your response does not seem as good based on your comments which makes me wonder if it is the progressive type. If so, immunosuppressants might be a consideration.
What about MMN has anyone mentioned that? , Any thought about the Lupus suggestion, the joint pain could be that. Have they tested for rheumatoid? What about just basic EBV?
If the dx is positive and you feel ivig is going to be constant AND you are a bad stick, I would say a port is inevitable. It will make your life much easier. Not to mention being a bad stick you probably only have a few good go to veins, they are not going to last forever. As well something else that I am thinking of regarding bad sticks cpmes to mind, let me know if you want me to mention it, I don’t want to be a debbie downer. Regarding your inquiry about the nurse accessing you and leaving, some companies do do that, some encourage it, our first one did, but it was not a good experience for us. Before the port, we were not a good stick and the vein would actually blow about an hour into the infussion. The ivig still flowing, it was very painful and wasteful and the stupid nurse could not be back for an hour because she was at a mall an hour away picking out engagement rings!! Needless to say, we do not use that company anymore. Other people do fine with the nurse leaving. One mom who lives in a rural area even gets the access in her childs port herself and does the entire infussion on her own, they live in a really remote area. So there are all kinds of options. If you could find a home healthcare that would set up and leave and use a fannypack, you could probably even do it at work! Then you could recupperate when you got home as opposed to starting when you got home.