I was a very healthy, exceptionally strong and active person, but had chronic asthma and allergies, so I took a yearly flu shot as a precaution against flu. But within hours after taking my 2007 flu shot, I got a severe headache, and unusual muscle aches and pains developed within days. Then nerve disfuction quickly took over my entire body head to toe, and I could not tell hot from cold, but had intense painful tingling on all my skin. I lost 15 pounds within a few weeks while my muscles quickly deteriorated, and within 4 1/2 weeks I could no longer walk...except in a staggering, halting way. My hands quickly became crippled and my feet dragged, and I lost the reflexes in my knees.
The right side of my mouth drooped down, and I lost control of my eating and speech. My vision, hearing, speech and memory were also initially damaged, but I have since taught myself to recover many of these former faculties. The sleep-center of my brain was also adversely affected, and I could no longer fall asleep, unless I drank coffee every few hours, which I learned to do, along with dealing with the pain by taking the maximum dose of acetaminophen daily for about 3 years. Agonizing muscle contractions ravaged my entire body within the first few years, and left my muscles more damaged. Within 3 years, my headache left, my skin lost the capacity to feel, except for intense pain in the nerves that were still left. The tendons of my hands, shoulders, elbors, wrists, feet and toes tightened and have left me with some misalignment.
After 6 1/2 years I still have ongoing mobility issues, and still need a cane and sometimes a medical walker. Life and daily living continues to be a very difficult struggle with pain and crippling. However, I have survived all this time, and that is the main thing, and God has sustained me through all of it.
Two years into onset, I could not thread a needle, but for the past year, I have been relearning how to knit, and it has given me back more mobility in my hands. It also helped my brain connections to heal or redirect, and I can speak better now. I have continued my work, though I lost much ground, and am still self-supporting.
Throughout all of this, I am still UNDIAGNOSED, and the medical system has given me no help with any of my symptoms or how to cope with life as it is for me now. My symptoms were ignored for too long by each of the professionals I dealt with, and in dealing with them now, there is only a wall of silence. I feel my case was bungled, and there is no recourse.
I believe I got GBS-CIDP from my flu shot. I ascertained this by finding an old pamphlet in my file cabinet from a former flu-shot in 2005 or 2006 (they didn't give me a pamplet in 2007), and reading through it to pinpoint the symptoms of an adverse reaction to the flu shot. I had the same symptoms, and I yet nobody would discuss it or help me. So, I went to the internet, and took a look at the info in the Canadian Health Care System, the American Health Care System, and I found online support groups--which were my lifeline throughout one of the hardest times of my life. Thank God for these support groups! God used them to keep me going, to give me hope and help and understanding, and to band together with others who are dealing with this condition.
I have learned much throughout this terrible trial, and there is still a lot to learn. But the main thing is to figure it out with the help of God and those who truly know and care, and deal with it, and live my life anyway!