IVIG number two, should I get it
July 27, 2017 at 9:47 am
Hello: I was diagnosed with GBS in late March after bouncing around two hospitals for two weeks. Finally after being discharged with three possible diagnoses I went to the neurologist who identified a neck issue a couple of years before. He gave me the EMG and immediately put me in the third hospital for IVIG for 5 days. It didn’t seem to do much. That was 4 months ago. I am now walking, albeit painfully and slowly; I have little use of my right arm, my knees are numb, I have lower reflex at my ankles, but none in my knees, I still have numbness in both arms and what feels like a band around each arm just above the elbow. The pain at this band (more discomfort and weirdness than pain) seems to be getting worse. I asked the neurologist if it meant I was having another attack or becoming more sensitive to injury from the original. He did not know and told me he would ask the insurance company for another IVIG. What should I do. Should I go back in the hospital for another 5 days for a treatment that did not seem to help in April? Or not? Maybe the April treatment kept me from having a more serious attack. I never had any breathing issues. I did have double vision but that has now healed…..Thanks for reading….
July 28, 2017 at 11:10 am
Never had GBS.
Generally speaking, GBS lasting more than 8 weeks is considered CIDP. I had one set of neurologists declare, “..your IVIG was not successful. Therefore we are discontinuing it.” hmmph, I had clear, albeit anecdotal, (means my opinion) grip strength improvement.
Later that year the Specialist told me, “You probably did not have enough, often enough.” Indeed after a period of once per week treatments I began to steadily improve.
Long winded way of saying I would get a second opinion and accept the original Dr’s offer of another round of IVIG and remain skeptical of the Dr who thinks my problems are all, or mostly, related to ‘neck’ issues.
Further, unless you had serious reactions, a hospital stay is not necessary unless it is the only way to get your treatment covered.
July 29, 2017 at 2:31 pm
If your neurologist advises a second round of IvIg, do it. That doesn’t mean you should expect a big improvement. Treatment of these conditions often requires some trial and error.
July 31, 2017 at 4:53 pm
I have read that it takes about three infusions to show improvement. I had one. The neuro wants to order more but there is a logistics problem. U am in a nursing home that won’t allow the infusion service in and I can’t walk, so the ambulatory infusion center won’t take me and hospitalization is too expensive. I am being tapered off Prednisone now with the hope that when I see my neuro next week, something else can be tried. The Prednisone I’d give me a little more strength, but the extra weight, swelling raised blood sugar really messed me up.
In two weeks, I go to the UC Irvine Neuromuscular Center for a diagnosis confirmation, which will hopefully force the insuarance company into paying for treatment.
Maybe Plasma Exchange will be up next, while waiting for SCig to get FDA approval
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