Need IVIG treatment to save my life

Hi, my name is Yan Zhang, I was diagnosed with Small Fiber Neuropathy on Aug 23rd 2022. It was confirmed by skin biopsy by Therapath New York. It’s a COVID 19 vaccine injury, be specific it’s the third one, the booster gave me problems, I was totally fine the first 2 doses. My immune system is producing bad anti bodies 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% better after IVIG treatment. IVIG works by correcting the underlying cause of the disease, so that’s give 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 3 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 sensation is changed. SFN can go through the entire body including internal organs. Recently I fell fatigue, faintness, pressure on my chest and throat, GI issues, ear ring, and weakness in my arms and legs.

SFN has started affecting my automatic nerve system as well, including my heart, lungs, bladder, bowels, temperature regulation. I am unable to sweat. I can not stand long on feet because of the burning and pain, my big toe moves by itself, and now my hands are staring to be affected. I feel sad for my hands because they are my main tool for my my job. I feel sad for my feet as I work standing on my feet. I feel sad for my new “now”. 

I am suffering 6-8 out of 10 pain daily and constantly. No meds are able to cut edge off of nerve pain. The pain takes all my mental energy away and 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, acupuncturist, chiropractor, massage therapy, thought I had Piriformis sciatica or a disc issue, had three MRI to rule that out, then the numbness and pain spread from my lower body to my upper back, shoulder blades, arms, trunk. 

My PCP thought MS was a possibility but a brain MRI ruled MS out. Then I asked PCP if I have GBS/CIDP and he said CIDP was a possibility. I did EMG nerve conduction tests and ruled out large fiber neuropathy and CIDP. I have been working hard to self help 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 for that. IVIG treatment is extremely expensive, and for SFN insurance only covers part of the treatment. I need 15 to 18 months of IVIG infusion to out number the bad antibodies in my immune system little by little. 

When I look at my photo albums, I miss my painting, modeling and photography. I was very motivated before this happened. I joined a Yoga class, studied oil portrait painting, did make up, hair, and wedding photography. I open an online fashion shop and also sold my paintings online. 

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 go find a good doctor but I said I 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, and if I had to wear a mask for 15 hours on plane I could not breathe easily and when I cannot breathe I panic. 

I continued to push through worked in tiny bits with pain to pay my studio rent but this week I started feeling faint and shortness of breath, and did not think I could any longer drive and work. In addition, I need to stay away from people to avoid catching cold before my IVIG infusion. Other people who have had the IVIG treatment told me the first 3 months will be tough, with awful headaches, a lot of zaps, increased sharp nerve pain, nausea, chills, musculoskeletal pain, and possibly from what I learned through research these last few months I knew IVIG is 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. 

A lot of tears, fears and loneliness on this journey. Any help and kindness from you is deeply appreciated. Thank you. 

This is a copy from a patient from North Haven before and after IVIG infusion treatment.