I got my second Moderna shot on March 11th of this year. My birthday. Happy birthday to me! The following six weeks consisted of a persistent weakening in the legs, such that I was having difficulty getting up the stairs in my condo. In addition, I was also vomiting two to three times a day, and within that six lost approximately 20 pounds. I was teleworking three days a week and expected to show up at the office the other two. Towards the end of the six weeks, I was calling in a lot, asking if I could work remotely, as I could barely walk. My employer's patience was running out. When I did get in to see my PCP, she barely recognized me. She said I looked like an old woman, skinny, hunched over, walking in on a cane, when previously she'd seen me as young and vibrant. She referred me to a neurologist who (if I recall correctly - my brain got really foggy around this time) initially diagnosed me with GBS, but did schedule me for IVIg outpatient treatment. Well, that didn't work out very well. My blood pressure shot up to 220 over another ungodly high number and the outpatient facility was not set up for that type of medical emergency. The IV was removed and I was transported to a local emergency room for admission to the hospital. I spent a week in the hospital, most of which is all a blur in my memory, receiving the first week of IVIg treatment. That was in early June. After discharge, I spent most of the summer off work, on FMLA, and at my mother's home in Florida, where I worked hard on getting "well." I spent my time in the pool, swimming as much as I could, and then sleeping. So passed the summer of 2021. September took me home and back to work again. October and November both saw additional weeks of IVIg treatment, and the start of physical therapy, which brings me to now. I'm really frustrated. I can't button clothes, which means everything I put on is in the frumpy zone. I'm not sure if I'll ever be able to wear heels again. I can walk without the can, again, which I know to be progress, but it's not like I'll be running any marathons soon. My hands and feet are numb and tingle (more like vibrate) all day and all night, such that my entire body is constantly "thrumming." The only time my body does not feel like that is if I am completely still, almost to the point of not breathing. My work feels as though these treatments, my whole time off work really has been a big inconvenience. If I had all this to do over, I would have never gotten those stupid vaccines. And I just found out I have to go take the test for COVID again anyway because the man I love tested positive two days ago. So all of this has been in vain.
Just a suggestion: go to the gbs-cidp.org for more informations. Also, my partner was diagnosed with CIDP 15 years ago. We highly recommend going to a major city and teaching hospital where they see many cases of GBS and CIDP. If you can't get an appt. go to the ER. While he still suffers from what they term"exercise fatigue", he has been freed rom his paralysis. Wishing you all positive thought for finding good doctor that specializes in this illness..