Hi, my name is Yan Jennifer. I am 44-years-old and I live in Connecticut. Prior to the jab, I was healthy and working full time as a licensed massage therapist. My life before my injury was successful! I was a fashion merchandiser from 2000-2012 in Shanghai, China, and then I went to cosmetology school to learn make-up, hair up-dos, and nail art in 2013. Then, at the end of 2013, I came to the USA with my American husband and my 3-year-old son. I went to massage school here and became a licensed massage therapist and aesthetician. I was happily working from 2016 until February, 2022, helping people with back pain, leg pain, or stress.
I am also a part-time photographer and make-up artist, and I also make and sell painting online. I always try to accomplish something each year. Right before I was injured, I took yoga and oil portrait painting classes and planned to open a fashion & jewelry boutique.
I was always active with work, painting, traveling, cooking for my family, singing, dancing, yoga, and taking my son to baseball practice. I took zero medication and was pain free. I want my health back. Since my injury I have stopped working. I am getting sicker and sicker. I am too sick and weak to drive more than seven minutes. After receiving my booster, I was diagnosed with Small Fiber Neuropathy (SFN) on the 23rd of August, 2022.
My SFN diagnosis now affects my autonomic nerve system as well, including my heart, lungs, bladder, bowels, and temperature regulation. I am unable to sweat. I can’t stand for long on my feet because of the burning and pain, my big toe moves by itself, and now my hands are affected. I am so devastated because my feet and my hands are in constant pain, and I use my hands as my main tool for my job.
I am suffering 8-out-of-10 pain daily and constantly. No meds take the edge off the nerve pain. The pain takes all my mental energy away and I cannot think straight. My life is pretty much paused and I feel like I am slowly dying. I saw 20 doctors before getting diagnosed, did many sessions of PT, acupuncture, chiropody, and massage therapy. I thought I had piriformis sciatica or a disc issue and had three MRI to rule that out. Then the numbness and pain spread from my lower body to my upper back, shoulder blades, arms, and trunk.
My PCP thought MS was a possibility, but a brain MRI ruled MS out. I have been working hard to rescue myself from the beginning, but the doctors and I went in the wrong direction with the back pain, even purchasing a new mattress and pillow. My diagnosis was confirmed by skin biopsy at Therapath, New York. My immune system has completely turned on me and is producing bad antibodies that attack my own cells. The diagnosis was further confirmed by identification of the Igm vs anti-MAG 4000 protein in my nerve cells in a test by Washington University.
My neurologist has been helping patients like me since last year, and some of his patients are 70-90 percent better after IVIG treatment. IVIG works by correcting the underlying cause of the disease, so that gives me hope that I can be me again. I have been missing my old life since this March when massive symptoms started. The list of my symptoms fills nearly three pages. I have numbness all over my body including my scalp, face, and burning pain in my mouth and eyes. Every inch of my skin is changed. SFN can go through the entire body, including internal organs. Recently, I felt fatigue, faintness, pressure on my chest and throat, GI issues, and weakness in my arms and legs.
When I look at my photo albums, I miss my painting, modeling and photography. I was very motivated before this happened.
I thought I might become a certified Yoga and Reiki practitioner. I thought about taking my son to China to visit my elder brother and senior mother, who I have not seen since 2013. Her hair is white now. From 2009-2013, she helped take care of me and my son, cooking and cleaning for me beginning when I was pregnant. In June, she cried very loud on the phone during the video call when I told her maybe I will never recover again. She said to go find a good doctor, but I said I have seen 10 doctors already and no one knows what’s wrong with me. She said come back here and look for a hospital, and I said I don’t have enough energy to make an overseas trip right now. I also told her that wearing a mask for 15 hours on a plane would make breathing hard, and I panic if I cannot breathe.
I continued to push through work in tiny bits with pain to pay my studio rent but this week I started feeling faint and breathing shallowly, and did not think I could any longer drive and work. In addition, I need to stay away from people to avoid catching a cold before my IVIG infusion. Other people who have had the IVIG treatment told me the first three months will be tough, with awful headaches, a lot of zaps, increased sharp nerve pain, nausea, chills, and musculoskeletal pain. I have researched IVIG for the past six months and I know it is possibly the only chance I have to be well again. It’s treating the root cause of my unexpected and awful illness, and that’s what I need so much.