u/Xooblooboo

As the title states. I did five days IVIG and completed it on June 25th. I'm on day seven of inpatient PT/OT and last night my body felt as it did the day I was admitted into the hospital. Is it common to have flare ups similar to those prior to IVIG? My body is in so much pain, and I've been given pain medication, but the pain persists. The pins and needles in my toes, feet, ankles, fingers, hands and wrists will not go away. I have muscle pain that won't go away. I don't know if this is "normal" bc GBS is different for everyone.

Any personal stories that are similar are welcome.

Six days ago, my hands and feet started to have a pins and needles feeling. Three or four days later, my tongue went numb. Yesterday, I was trying to use the restroom, and I found myself not knowing how to push. By this point, I go to the ER. Long story short, they tested me for a stroke, looked good, and told me I was having a silent migraine.

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This morning, I got out of bed, and experienced ataxia in my legs. My face is beginning to go numb, and my emotions are high. I did an online appt, and the dr asked if I had heard of GBS, and to Google it and reach out to my PC.

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I see my PC tomorrow, and my husband is watching for face drooping as my face continues to feel like pins and needles.

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I am not looking for medical advice, just commiseration.

My office doesn’t have an HR, and I am trying to figure out if what they are asking my Dr is okay, as it feels invasive.

My employer asked for a doctor note bc I had two 20 minute bathroom breaks in two weeks. I am on a medication that causes gastro issues, and sometimes my bathroom breaks are a little long. Longest was 30 minutes in the last year.

I gave them a note from my doctor that stated I am in their care, they are monitoring my situation, and I may require longer restroom breaks at times. My employer then gave me a document for my doctor that asks how long my bathroom breaks are and how often. That is the part that feels invasive bc how can anybody know those answers?

After I handed in my note, two managers went into the bathroom when I did, which they’ve never done, and I felt like I was being watched.

They gave me this questionnaire after the owner and my manager had a meeting about my doctor note, and I’m not sure why I could not be part of that meeting, which also felt off to me.

My work has not been affected. I don’t need any accommodations other than sometimes it might take me longer than normal.

Can someone please let me know since I don’t have an HR department to refer to.