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 Dr. Jonathan Katz’s speech, “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.

Here is the short version of my long story:

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.

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.

I couldn’t believe the diagnosis of a psychological cause at all, because it would defy all logic.  First of all, before the vaccination I had no history of mental problems and no reasons for developing any.  I had been living a perfect life and was as happy as one could be with my job as an aspiring writer for TV — that was my absolute dream job, which I still missing a lot.  Secondly, how in the world could I mimic psychologically the kind of neurological symptoms immediately after the vaccination that comply exactly with GBS symptoms and are also recognized as a possible side effect of the tetanus vaccination, given the fact that before the onset of the disease I didn’t have the slightest clue of vaccination side effects in general and Polyneuropathies specifically.  What an eerie coincidence that would be!  Isn’t there a saying:  When something looks like a duck, quacks like a duck, most certainly it is a duck! 

My immunologists dismissed the alleged psychological illness because my blood tests showed an  over immunisation with Tetanus Toxoid , an HLB-8 marker, a high titre of ANA, antibodies and antibodies against the thyroid, all indicating a dysfunction of my immune system.

In 1996, a knowledgeable neurologist diagnosed me with vaccination-induced Polyneuropathy due to:

1)         the pattern and history of my symptoms, such as the weakness and paraesthesia in the arms and legs, improving or worsening with remissions and relapses,

2)         the results of his physical examination, which confirmed reduced vibration-feelings and hyperaesthesia in the distal limbs, the fact that I’m not able to stand or walk with my eyes close, that  knee-reflexes presented with a first increased, then an exhaustible clonus, and the ankle reflexes were decreased,

3)         and the fact that the NCV tests  he performed showed a reduced nerve conduction in some nerves.

But stunningly, the most of the NVC tests performed by other neurologists were normal, so I didn’t receive any treatment at all.  What I know now:  If I would have been treated with IVIG infusions at the beginning of my symptoms, I would have had the chance to recover quickly and get back to the life I had before.  But this is not what happened.  Instead, I had to quit my dream job and then felt like I was imprisoned for life, without any chance of parole.  I don’t know how I managed to survive all these years, facing nothing but ignorance from the legal and medical establishment.  Instead of being helped, I was only supported by my neurologist, close  friends and relatives. 

I also found support on the internet.  On a GBS site, I found a woman from the US who was suffering from almost the same side effects after a tetanus vaccination as I did, so we both were rocks to each other.  She was finally recognized legally that her GBS was a result of a tetanus vaccination.

Finally, seven years after the vaccination, I was been lucky to get diagnosed with Common Variable Immune Deficiency, CVID, presenting mainly with a deficiency of the Immunoglobulin G.  Thanks to this diagnosis, I was treated with regular IVIG infusions!!!!  Then my recovery began.  After the fourth infusion, the most disabling CIDP symptoms improved miraculously.  Being tethered by an invisible vice to my home before, only a few months after the beginning of the treatment I was able to visit a British friend in the UK.  Flying alone and walking across the huge London Heathrow airport isn’t a challenge for a healthy adult, but for me, being confined to my home for all the years before, it was a huge milestone I accomplished.  From that point on—thanks to the IVIG infusions—the doors of my prison opened.  I could start living a almost-normal life again.  Believe it or not, before getting the first infusions, I needed someone to drive me to the physician.  Now, I am not only able to take the train but also walk the two miles from the train station to the doctor’s office.

Actually, I can say that I have regained about 70% of my previous health, but I still need the IVIG infusions on a regular basis—all 4 weeks to be precise.  Otherwise, I suffer from severe relapses.  But there are also symptoms that have hardly improved, that is, the huge fatigue and exhaustion.

So in my mind, the finding of Dr. Katz “that the best way to prove that the patient has an immune neuropathy is to treat them with IVIG” is of the highest importance for GBS/CIDP sufferers worldwide.  This fact needs to be made public.  A treatment with IVIG at the beginning of the disease, despite of electrophysiological tests, will help many CIDP patients to recover quickly rather than to suffer and watch their life fading away, as it was in my case.  I know some other GBS/CIDP patients who are also denied a proper diagnosis and IVIG treatment as well.  For example, there is a medical student who became almost paralysed after a Hep B vaccination.  She was admitted to a mental institution for the treatment of her alleged psychological disorder.  Of course, her symptoms have not improved.  Despite the psychological treatment, she is still sitting in a wheelchair.

It is one thing is to get medical treatment, and it is another issue is to receive legal compensation for all the suffering.  Here in Europe, patients with normal NVC results are denied the diagnosis GBS/CDIP and are usually diagnosed as "hysterical" or suffering from "psychological" problems, especially if they are females.  Having being denied a proper diagnosis and treatment for so long, after having lost my health and dream job due to the Polyneuropathy, I also do not want to lose my dignity by being labelled by officials as stressed or suffering from a psychological disorder when I’m actually suffering from CIDP/GBS.  Isn’t it amazing that I didn’t go nuts as a result from this?  Although I am usually gentle-natured, I am also a fighter.  As a TV author, I was used to fighting injustice, so I also will show resilience in my case and keep on fighting for my vindication against all odds.

I’d like to thank Mark Brower and CIDPUSA so much for their support.