Reply To: No improvement after almost 5 months

May 9, 2018 at 6:12 am

I am sorry this is long but I think the information I am providing will help.
–I have an extremely aggressive and severe form of CIDP and another disease called CMTX. I was diagnosed with both diseases on top of each other. The complexity and multiple variables of your son”s conditions are difficult but you need to get another neurologist immediately. I am appalled that he received 1 IVIG and 1 plasma exchange. Based on the severity of his onset and requiring a vent, the first line of treatment is a standard 5 days of IVIG for both GBS and CIDP.
–It sounds like he may have a form of CIDP similar to mine. Since he wasn’t feeling well before his leukemia diagnosis, some of that could have been the onset of CIDP, not GBS. If it was CIDP, when he suddenly progressed very quickly with his paralysis and need for a vent he was have an exacerbation. I had a sudden exacerbation of my CIDP-In less than 12 hours, I went from using leg braces and crutches to paralyzed from neck down and on a vent. Even though I was already using 5 days of IVIG every 28 days to treat my CIDP, doctors refused to give me any. For 4 days, doctors insisted CIDP wasn’t life threatening, doesn’t effect breathing, and so IVIG wouldn’t help and they wouldn’t give it to me. On day 5, my neurologist came to the hospital (because I stopped breathing-I was taken by ambulance to the closest hospital not the one he goes to) to take on the doctors caring for me. He convinced them to do IVIG for 5 days. I came off the vent before I finished the IVIG. By the time I was discharged 3 weeks later, I was back walking with my leg braces and crutches-back to the disability I already had. If he hadn’t intervened, I would not have survived.
–If your don’t think he had any symptoms of CIDP before his leukemia diagnosis, he can still have CIDP. There is a disease called ACUTE CIDP. It comes on fast, like GBS, but it continues to progress for at least 8 more weeks, instead of stopping like GBS.
–I am going to be blunt because I think I am doing you a disservice if I don’t. I survived my exacerbation 15 years ago but even with extremely aggressive high dose IVIG my disease continues to advance. I am in a motorized wheelchair, developed partial paralysis of my diaphragm so use oxygen, arms are affected, many other issues. I spent 208 days in the hospital last year alone- but longest continuous stay was 39 days. Ever time something goes wrong (like this yr 2 septic infections, aseptic meningitis and even a stroke) that should kill me, doctors don’t want to treat me because I will die anyway. 11 different times over the years I shouldn’t have survived but I did. If my husband hadn’t continued to argue, force them to treat me so I could have a chance to fight to survive, I would have been dead years ago.
–I think that might be what is happening with your son. The doctors figure he is so sick with both disease that he won’t survive no matter what so why treat the GBS or CIDP. The argument for treating the GBS or CIDP is simple and direct. If they believe he won’t come out of it, then there is no risk to him by trying to treat it. You don’t have to worry about a bad reaction to IVIG or making his condition worse. You have nothing to lose and everything to gain.
–I apoligize for the length of this but I didn’t know any other way to explain.
–I hope this has helped in some way.
–I will pray you son gets some treatment and he too surprises all the doctors by stabilizing.