Hi from physician spouse of newly diagnosed CIDP, would appreciate insights…
My beloved wife awoke July 17th feeling like her nerves and muscles were on fire. She continued to have muscle pain and tenderness for several weeks and then began getting weakness but not too bad. Then at the end of September she got dramatically weaker and by Oct 1 was falling.
She saw a neruologist on Oct 12 who diagnosed CIDP (I’m a family Doc and had never heard of it, though certainly of ‘atypical GBS’). We started IVIG 2gms/kg on Oct 13. She had a repeat dose of 1gm/kg two week later (last Monday).
She continues to get weaker and is having all kinds of wierd and painful sensations mostly in the feet , legs, hips. Her arms and hands are a bit tingly and weak too.
I’ve read a lot of the threads here, and have a few questions:
I still worry that since there has been progression since starting the IVIG that the diagnosis may be incorrect. (NCS/EMG showed conduction block and some axonal damage in the legs, LP showed elevated protein, there is areflexia) It seems though from talking with now 4 different neuros, that it’s the only real possibility. Any thoughts?
Secondly, I don’t really know what to expect from the IVIG. I’ve read that people who respond do so anywhere from 24 hrs to 6 weeks after beginning treatment. Our plan now is to tx every two weeks for the next six weeks before moving on to other treatments. It’s hard to wait though when I see her wasting away and in so much pain.
So there it is, I’m looking forward to posting here regularly as we deal with this. As you all must know, it’s pretty awful to witness anyone’s suffering especially one’s partner.
Thanks in advance for your responses.