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Long history of being undiagnosed

CIDP from Tetanus vaccine

Crippled by CIDP, being misdiagnosed for a decade,
and walking again thanks to IVIG infusions

In the following story, I would like to share with you my experience of developing CIDP as an adverse reaction to a tetanus vaccination, and of my decade-long ordeal of misdiagnosis and lack of treatment for this disease.  For years, I have been suffering in silence.  The reason for going public now is that for the first time I have finally found this website, www.cidpusa.com, in which I found a wealth of articles and sophisticated information.  It provided me with an insight into the problems, diagnosis and treatment of CIDP.  Having browsed the internet for years, nowhere else could I find anything that described the problems I had experienced.  I presented with almost normal electro-diagnostic studies while experiencing exactly the symptoms fitting the pattern of GBS/CIDP. Due to my normal NCV tests, I had to wait for over 7 years before I received IVIG infusions, which eventually improved my condition miraculously. So I could hardly believe my eyes when I recently I came across Dr. Khan's  article  on  "Chronic Immune Neuropathies: IVIG as treatment and diagnostic test," on this website http://www.cidpusa.org/katz.html

Almost immediately, I recognized the problems I've been going through for all these years. In this regard, I consider myself a poster girl of what Dr. Katz described.  As almost certainly I am not alone with this kind of experience, I am going public with my story to help other patients who face the same problems.

The problem with Immune Neuropathies like GBS and CIDP is that these neurological diseases present with symptoms of enormous complexity.  As a result of this, patients not only suffer from disabling, excruciating symptoms, but they often have to fight to get the right diagnosis and treatment.  This outrageous scandal occurs with little public awareness, in sharp contrast to other "famous" diseases, such as, AIDS and Cancer.  Polyneuropathies are not only rare, but also coverage of them in the mainstream  media is almost non-existing. I hope this gives you the information you ask about in your response.

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Story continued

Being a thirty-something female in the early 90s, I worked as a freelance TV writer, was fit and healthy and lived a happy life. Unexpectedly and without a warning, my life changed into a nightmare when I decided to get a tetanus shot after my cat bit me and a booster shot was overdue.  If I only could have imagined what this momentary lapse of reason would result in, I never would have decided to get the vaccination.  At that time, I didn't have clue what kind of side-effects vaccinations can trigger, and the inoculating doctor didn't tell me either.  During the night following the shot, the leg in which I was inoculated began hurting very much and became weaker and weaker.  Over the next weeks, the weakness progressed to the other leg and ascended into my arms.  I could hardly walk or use my fingers.  Also, I experienced back pain and crampy, deep muscle aches in my calves.  Later, I developed abnormal sensations in all my limbs, like tingling, numbness, feeling asleep, a sense of ants crawling on me.

  • AUTOIMMUNE EPIDEMIC
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    Eventually, I became so frail.  I had never been so weak in my life, disabling me so much that I couldn't leave the bed for weeks and had to be cared for by relatives.

    The then-consulted neurologists first suspected GBS, but due to my normal NCV tests, I was told that I suffered from either psychological problems or stress.  When I mentioned the vaccination as a possible culprit for my ailment, some doctors even became aggressive and rude to me.  One even yelled at me and said that vaccinations do not have any side effects at all.

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