Purposeful Misdiagnosis

It has been two years since I was purposefully misdiagnosed with Relapsing Remitting Multiple Sclerosis. I will never forget the words of my well-respected neurologist as he leaned over in his chair and said to me, in all seriousness, "You have no lesions. All your tests were negative, but I am still diagnosing you with this disease. This is what you have." And then he proceeded to "insist" heavily that I accept the injectable medication samples that "had been proven to prevent further damage to the myelin sheath".

I had suffered this kind of nerve damage before. I had been paralyzed from the shoulders down, without the ability to walk, sit up, swallow, or breath on my own. Guillian-Barre' Syndrome had nearly killed me seven years prior. I did not want MS to do the same.

My new neurologist has discounted my last neurologist's previous diagnoses. "You never had Guillian-Barre'," he said. "It was MS the whole time."

For three years, I stabbed myself in the legs, the hips, the stomach, the arms every single day of my life with medication from a drug company that sent my doctor to conferences in Vienna and San Diego. When I had my third allergic reaction to the Copaxone, and suffered through my third ER visit with asthma attack and hives, my doctor still did not want to allow me to go off my MS meds. I quit them on my own, and he ordered something newer, something much stronger.

As time progressed, I weakened, lost my ability to stand for very long periods of time, and I all but quit writing regularly. As a new, successful freelance writer, I was only half-joking when I spoke of my "early retirement at age 28". I was watching my children grow up without much intervention from me. My husband would silently fear that one day there would be no other parent in the house with him. All my tests continued to come back negative for MS, and yet, I was worsening. I had openly challenged my neurologist's diagnoses during the entire testing process, but after my 10th MRI in two and half years, I demanded that he prove to me how I could possibly have this disease.

"It has to be something else," I insisted. I was losing my hair, the feeling in my fingertips, and I had a complete loss of balance. If I walked at all during the day, it was with a set of Canadian crutches. I hardly noticed the stares from the public anymore.

"We have tested you for everything else there is," he said to me very angrily one day. And when I became too ill, after several treatments of more than 2,000 milligrams of IV steroids a day, I was put in the hospital and interviewed by a psychiatrist. Every now and then, I needed my husband to tie my shoes, feed me, or sign my name on legal documents. I would go through periods of wax and wane, but with each time, I lost a larger portion of my physical self. Through it all, I refused to accept depression.

In the hospital, my neurologist threw a completely shocking allegation my way. "I still believe that you have a mild form of MS, but it should not be this bad. I think some of this is emotional."

Without my knowledge, he had contacted my primary physician and told him that I had conversion disorder - a contraversial Freudian diagnoses where a patient is supposed to be suppressing a large amount of deep-seeded pain that manifests itself as false neurological deficit. I discovered this new diagnoses quite by accident when my primary brought it to my attention and suggested that he would defend me should I wish to sue. "I know you, Tiffani," he said. "You do not have conversion disorder. This is not in your head."

After only a minor amount of research, I discovered that I was not the only patient this doctor had diagnosed with MS without any medical evidence. I was, also, not the only patient with false MS whom he had insisted take heavy and dangerous MS medications. When I discovered that a major lecture series he was giving was promoted and sponsored by the same drug company that made most of these medications, I knew something was very wrong. I called my insurance company. They took immediate action and began an investigation. I will never forget revealing this neurologist's allegations to my nurse advocator. "He diagnosed me with conversion disorder when I questioned him for the last time, but, yet, he wants me to still take Rebif."

I had been completely violated, completely used. When I close my eyes, I can still see this doctor's walls lined with box after box of beta-interferons for his patients (diagnosable or not) to begin taking before they even leave the office.

I chose not to sue, chose not to drag my family through the mud. Friends who have never really been ill insisted that it was my duty to spend the next few months of my recovery, from whatever it was I actually had, fighting this man who had tossed me aside like a piece of trash. I know where he is now. I know what Blue Cross thinks of him. I know how much of his bills they will not cover. This gives me immeasurable joy. I know the newspaper articles being written about my ordeal even now as I write here for Associated Content.

And I began to write again, began to investigate my illness on my own. After more than a year, and a new neurologist, a simple blood test done, because of some strange and severe leg cramps I was having, revealed that I have chronic iron-deficient anemia. My new doctor promptly ordered iron infusions for me, and when they are well-placed, I have enough energy to walk on my own and function, mostly, like a normal person. Although, I still have some severe balance problems, and I am often crippled by blinding migraines and debilitating fatigue (thought to be caused by the anemia). There is no known reason for the rare type of anemia that I have. There are more tests that can be done. I will do them as I see fit. I have recently been asked to join a non-drug related clinical trial for people with my particular type of migraine. They are severe enough to suggest a heart defect. Again, a simple test would have revealed so much to my incompetent neurologist and to me, the only person any of this was really about.

Had I simply followed my gut and believed myself, I would never have suffered or allowed my family to suffer under the purposeful misdiagnoses of MS that I received. I would not have spent $200.00 a month for three years on insurance copays for medications that, very likely, have made my anemia worse. Today, I am still recovering. Very few people who have met me within the last two years, know this story. When they discover it, they demand that I sue.

"One day soon, this doctor will be without a license in the US," I assure them. And there is always the truth that one should never mess with a writer, lest he end up in print.

My true diagnoses is sometimes difficult. Without iron, I have no red blood cells. The MS meds had something to do with this as well. I am no longer devastated by the diagnoses of a very medically disrespected and outdated Freudian diagnoses. I have a new power. I live with confidence, because I have been blessed with life and the good sense to know when I need to speak up.

The next time you feel ill, go to the doctor and receive your diagnoses, make certain you do not agree to anything without a second or third opinion and without doing a little research yourself. Trust your gut. It is the most important thing you can take with you to the doctor. Mine saved my life.