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L.L. – Michigan

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Describe the symptoms and the timeline of the reaction.

"I was vaccinated with the Moderna vaccine and felt tired after the shot - had an itchy mouth and scalp, and later that evening started having numb soles of my feet. In the next two days I developed parasthesia, with numbness and pins and needles/shocks ascending bilaterally in both my hands and feet. I also started losing fine motor skills, had difficulty walking, and a dull headache. By the end of the third day, I had facial parasthesia like having had numbing dental work and then started to lose control of my face muscles with my chin constantly trembling unless I with difficulty locked my jaw. The ED did not admit me or refer to neurology despite high blood pressure (but normal EKG and CBC).

The next day after seeing my primary care doctor who I was referred back to after the ED visit, she indicated that I may have Guillain-Barré Syndrome. She had me go back to the ED as my parasthesia was ascending to upper arms and thighs. The parasthesia continued into my torso and I had uncontrollable random tremors in my legs. I was examined by neurology and ultimately admitted to have an MRI of my brain and spine which proved unremarkable. My heart rate remained high particularly when standing but also when resting.

The neurologist who examined me the next day ordered a spinal tap although he advised that being this early after the possible trigger (the vaccine) it was unlikely that they could diagnose GBS. They did test for other infectious diseases, autoimmune, etc. and found nothing and no proteins confirming GBS either. With continuing tachycardia, he felt there was peripheral and autonomic neuropathy at play and that even if a diagnosis could not be reached, that I should be treated as being presumed to have GBS. I had started to get blurry peripheral vision that day so was relieved to begin treatment, IvIg. I had one infusion that evening, still had tachycardia although seemed improved in tremors, and then had another IvIg infusion the following evening. With the tachycardia no longer dangerous, I was discharged the next morning and had a follow-up video appointment set for 2 weeks later, and was instructed not to work for 2 weeks either.

Although it could not be positively associated with the vaccine, the neurologist instructed that I should not receive another mRNA vaccine. He advised that I may decide to take a different type of vaccine, such as the J&J but that it would be best to wait and to consult my internist.

The same was repeated in my follow-up visit. Although my symptoms like paresthesia had not resolved in that time, I was told that this lengthy recovery time is normal in GBS. I was still exhausted as well but felt I could attempt some therapy in the coming months and was referred to occupational therapy. Occupational therapy gave me some coping mechanisms for nerve pain but nothing has helped to heal my nerves. Thankfully my mouth is just numb and sometimes shaky, not constant tremors, but I still can't walk far or do normal activities. It's difficult to enunciate and speak for long periods. I had to make adjustments to work and can't see the screens well, need a very ergonomic keyboard and can't use a mouse. I rely on voice commands but dictating is tiring. At the end of the day my nerve pain in hands and feet is worse. If I do too much activity, my nerve pain is worse. In the mornings it's hard to get my numb hands and feet moving. I'm very weak and have trouble squeezing and grabbing things. I drop things and stumble. Among the just annoying issues are sinus pressure in my face, numb mouth and lips, and tingling scalp.

I was an active 34 year old mother of a 2 year old before this happened. I would put her down to bed and continue working at my exciting remote software startup job. I did glass blowing and yoga - I certainly couldn't hold the equipment or do many poses now. Now I have to pace myself to get through a normal work day and can't handle regular walks with my daughter or doing much at the park, just sit on a bench. I can't chop veggies and cook much very well. And I feel I'm lucky just because I could not be able to walk or breathe if this had progressed further. Unfortunately the symptoms that remain aren't resolving and I don't know when or if they will.

L.L. - Michigan"

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