Recovery-"treatment related fluctuations"

Quick history: my first symptom (numb/tingling feet) was on Friday, April 28. 1 week later I had persistent neuropathy in hands/feet, numb strip across back, nerve pain in back at night, and a numb tongue. My PCP had done bloodwork and was referring to rheumatologist (I have a family history of autoimmune diseases). Prior, I was completely healthy with a distance running hobby. Monday (8th) I went to ER I selected bc that system had the best neurologist I could find for autoimmune neurological problems; I really thought I had GBS. By that point, the back pain at night had progressed to severe and I noticed significant muscle weakness that morning. The ER doc discounted GBS…lots of tests (all normal, although I asked him to check my reflexes and I had none in my knees) and “I have no idea what you have; see a rheumatologist and come back if you can’t walk or breathe”. Lovely. I went back 2 days later and they had me dx within about an hour and I started IVIG later that day. I guess I wasn’t a hypochondriac/idiot after all!

I never progressed to full blown paralysis or breathing problems. I had the loss of sensation in hands/feet/back/glutes/abdomen/tongue, severe nerve pain in back, and muscle weakness mostly in glutes,hamstrings,hips,core. I know I am blessed to have a less severe case. When I was about 2 days into my 3 days of IVIG (and I wonder now if I should have received 5 days), I started having facial paralysis, bi lateral but different effects on each side. They decided it was just the process working its course (and MRI had showed inflammation in cranial nerves). I spent a week in the hospital and another week in a rehab hospital. The facial paralysis lasted about a week. After 2 weeks being completely gone, the facial paralysis (milder this time) returned. The nuero team had me return to ER and after exam and long discussion with neurologist, he told me there was really no way to know if additional IVIG would help me. I was right at 6 weeks out from initial symptom, and he explained there is a thing called “treatment related fluctation” that happens in a small percentage of patients. When the IVIG moves out of the body, some symptoms that had gone away can re-present. If it is under 8-9 weeks, this shouldn’t be thought of as a sign of CIPD and can just be part of the recovery process. On the other hand, I could still have bad antibodies working their mischief in which case more IVIG would help. There was just no way to know. I elected to wait and see how it went. It has not gotten any worse and I’ve had no new areas affected (he said if I had areas affected that were never initially affected, that would be a red flag, or if I have continued symptoms re-emerge after 8-9 weeks). My husband I read through the study he cited on this, I believe from 2011.

Questions: Anyone else have these treatment related fluctuations, and how did your recovery progress? It’s been 2 weeks since the facial paralysis returned and it hasn’t changed much since then. My numbness in the other parts of my body (my face–other than my tongue–was never numb, just paralyzed) at first regressed after treatment but has not changed at all in probably 3-4 weeks.

The docs when I was in-patient thought I might have the Miller Fisher variant. I thought they were wrong bc from what I’d read, MF presents with facial paralysis as an initial (or near initial) symptom, not as the last one. I also read a lot that indicated a fairly large percentage of GBS have cranial nerve involvement. I have also read that cranial nerve involvement (as well as more severe cases) are less likely to have CIPD. Anyone have MF experiences that can confirm or deny these things?

Also, I have yet to see the nuero that I wanted to see that specializes in autoimmune. My follow up is with him, but he said he didn’t need to see me for 6-12 months and I don’t have an appointment until January. I was very frustrated by this as the neuro in his practice I saw in patient thought he would see me in a few weeks. She had consulted with him and he did direct some of my care decisions while in patient. I have debated going to one of the top care centers recommended by this foundation; I’ve talked to them and I could be seen next month. However, it would be much better going forward if I have any issues arise to have a doctor here. And my understanding is now I am in the recovery stage, and there is nothing to do but PT, rest, and wait. However, I’m still torn. The doc here is very highly rated and with excellent qualifications, but apparently my city really needs some more neurologists! They are hard to get in to.

Any insight on these questions and the recovery process in general are appreciated. I meant to work really hard on my PT as I am used to being active and am determined I will be a runner again!, but this fatigue is really kicking my butt. I was warned to not push too hard as that can cause regression in recovery. So I am trying to be a “good girl” (ha!) and rest when needed. Sometimes it seems that “when needed” is all the time! At the same time I realize I am just 2 months out and have far less to come back from than many of you. Anyone who had a similar degree of GBS that can let me know how your recovery progressed?

Thanks.