September 13, 2019 at 12:32 am
We are aware of the septic meningities, we also were told that headaches were normal as long as it is controlled with tylenol and his did go away and hasn’t come back. Tomorrow he is going to keep the rate slower and see what happens.
I don’t understand what you mean about better controlled if the CIDP is treated more directly without triggering aseptic Meningitis. I guess I missing what you are getting at.
We don’t have a lot of choices of doctors on our insurance and unfortunately for us to change appointments are months out, past the beginning of next year, not to mention he had colon cancer and is suppose to do chemo but they want the neuropathy to be under control first so time is of the essence it’s very frustrating as I am not convinced it is cidp with the symptoms he has of the burning on his chest all over and pain weakness numbness in arm. I just have no clue what else it could be but this is what the neurologist thinks it is.September 4, 2019 at 1:30 pm
Yes he had a spinal tap a couple weeks ago and it was elevated 174.September 1, 2019 at 3:50 pm
Thank you Jim I appreciate the response. He is not able to take vit b12 as his levels were quite high from supplementing. He really wants to start taking them be if it could affect ncs we are leery as we know he needs the ivig right now. How long does it take for cidp to show up on emg and ncs?August 10, 2019 at 12:56 am
Wow thank you so much for all of your information you have given.August 9, 2019 at 8:03 pm
Thank you, we saw the neurologist today and she is going to talk with the oncologist about exactly what chemo he will on to see if it will be ok or not. I feel so bad for him, 2 horrible things at the same time.August 9, 2019 at 11:31 am
Hi and thanks for the reply. The chemo isn’t for the CIDP it is for the colon cancer, it is folfox. With this some of the side affects are neuropathy and so we are afraid that it will make his cidp worse. His oncologist said that chemo can actually help cidp but not sure if all kinds do.