Misdiagnosed with Parkinson's Disease...

by Diane
(Brooklyn, NY)

About 11 years ago my neurologist diagnosed me as having Early Onset Parkinson's Disease. He sent me to a movement disorder specialist who was his friend to finalize the diagnosis. That was the end of my life as I knew it.

I suffered depression, anger, nightmares, sleeplessness, resentment, fear of becoming a prisoner in my own body, fears about watching my body morph into something horrible, constantly thinking about how much of a burden I would be on my family, fears of losing the love of my partner, fears about how long I would be able to work as a teacher...

Every day I was consumed with thinking that this incurable, chronic and progressive disease was going to slowly destroy me physically, mentally and emotionally. Every time I saw Michael J. Fox on TV, I became an emotional wreck to the point of vomiting. I have suffered through severe side effects from medications for Parkinson's. About 3 years ago,I became obsessed (medication side effect) that my partner was cheating on me. To save the relationship, I had to see a therapist.

After hearing about my extremely stressful childhood, the therapist said I didn't have Parkinson's Disease. I told my neurologist who said that guy was not a specialist but a quack. I believed him because he was my doctor. I had developed a great doctor-patient relationship. I trusted him.

The Parkinson's Disease meds made me extremely forgetful, I couldn't find things that were right in front of me, I felt spacey, in the middle of the day I would fall asleep, I was unable to concentrate or finish tasks at home and at my job. I also had two car accidents, the second one I totaled my car. I was never told not to drive while on the combinations of drugs, especially Ambien and Mirapex.

While on Ambien or Lunesta, I would fall asleep with my eyes open and have conversations with people who weren't there. This scared my daughter so badly she locked her bedroom door every night and slept with a bat because she thought I was crazy. While on Ambien I would binge eat in the middle of the night and make a horrible mess. The worst part was, I had no memory of doing it.

I had an allergic reaction to a medication that contained sulphur and had a horribly painfull rash which resulted in a trip to the ER. I have pictures of my legs swollen to 3 times their normal size. I went up a whole shoe size but to walk was still painfull. I developed mottled skin and hyperpigmentation on both my legs from some of the other Parkinson's meds.

One time, I had serious pain above my ankle and the doctor thought it was a blood clot, and that it could possibly break off and travel to my brain causing a stroke. I was not doing well physically and mentally I was an emotional wreck. Also, he told me since I was almost on maximum doses of carbidopa-levodopa, I needed to start thinking about having Deep Brain Stimulation and that he knew someone who was really good. Every day, at some point, I would bust into tears and cry uncontrollably.

Then in September 2011, my neurologist disappeared. He left no one to take his place so I could continue being cared for. After two months, I was forced to find another neurologist. I did and guess what... he told me I DID NOT HAVE PARKINSON'S DISEASE and that I was misdiagnosed!

That is why the first neurologist always called me his "Parkinson's Poster Child". I was doing well for so long because I never had the disease. Also, the new neurologist told me I was not on max doses of Parkinson's meds but baby doses. He sent me for an MRI and found several herniated and bulging disks that simulated the symptoms of PD.

I refused to believe him. Three weeks ago, I went to a movement disorder specialist at New York-Presbyterian at Columbia University in New York City. The doctor assured me I did not have Parkinson's Disease. I have been weaned off all Parkinson's medications and for the first time in a long while my mind and body feel normal. I am undergoing physical therapy.

I am angry that I lost 10 years of my life for nothing. I still keep having nightmares about the thought of having Parkinson's. Because of the obsessive compulsive disorder (gambling) which was one of the side effects of Mirapex, I am in debt for approximately $30,000 dollars.

Also, I got a hold of some of my medical records from the doctor who treated me for PD and there was information about me that was not true. He had me as receiving counseling for sexual practices, and for sexual and domestic abuse that never took place. He had me as widowed when I was divorced. It looked like a description of a completely different person with my name.

How can a doctor get away with this type of behavior? Can a physician be sued for misdiagnosing a disease and causing a patient emotional distress? I feel that my doctor took advantage of my emotional state since I always believed something terrible would happen to me and he knew this. What can I do about this? I appreciate any information you can give.

Visitor Question:
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ANSWER for "Misdiagnosed with Parkinson's Disease...":

Diane (Brooklyn, NY):

The good news is you are now healthy.

If the primary physician misdiagnosed you as having Parkinson's disease you may have the basis of a medical malpractice case. The Statute of Limitations in the State of New York for filing a medical malpractice claim is three (3) years.

Medical malpractice cases are very complicated and protracted. You will have to seek the advice and counsel of a personal injury attorney who specializes in medical malpractice. One of the contested matters will be whether the statute of limitations has already run, or if the statute was "tolled" (paused) during the time you have been suffering.

Next is locating the doctor. Contact the New York State Medical Board. If the doctor is still practicing in New York State they will have an address where your attorney will be able to serve him with a lawsuit. Even if he moved to another state, it's altogether possible if he applied for reciprocity (meaning being able to practice in that state without having to take the medical board exam), the New York Medical Board will still have his address.

You won't have to worry about having to travel to whatever state he might be in. That's because the venue, or location, of your lawsuit will be in New York. Because the misdiagnosis (malpractice) took place in the State of New York, New York will be the venue of the lawsuit.

The above is general information. Laws change frequently, and across jurisdictions. You should get a personalized case evaluation from an attorney licensed in your state. Find a local attorney to give you a free case review here, or call (888) 647-2490.

Best of luck,

Judge Calisi

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Comments for Misdiagnosed with Parkinson's Disease...

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Me too!
by: Anonymous

Today I have walked into a new world. On 22nd April 2009 I was diagnosed with Parkinson's Disease and put straight on Ropinirole. I saw the same consultant year on year until he told me to come off Ropinirole and go on to Levadopa, as this was now thought to be more beneficial.

I reduced gradually from 12-6 then went into a period of agitation and fear which was recognized by my Parkinson's nurse as Dopamine Agonist Withdrawal Syndrome. I asked for psychiatric help, believing that it was part of the disease.

At my next routine visit to the Consultant, he trivialised my reaction and added 'paranoia' to my headline diagnosis. His comments to the DVLA (UK) resulted in me having my driving licence taken away for 9 weeks until I fought to get it back.

I am also a teacher and he questioned whether I was safe to be 'left alone with children' and told me to report myself to Occupational Health. Fortunately, my Head Teacher stood by me.

As a result, I requested an appointment with a new consultant and today I saw him for the first time. We talked through the journey I had come on in the last 7 years and he tells me that he doesn't think I have Parkinson's, or maybe a very mild form.

I am shell-shocked. When I left this interview I took a photo of the street outside the window which I will always keep as the first glimpse of my new world.

I cannot express how much terror or pain these 7 years have cost me and my family, my poor husband who has stood by me through so many crises. As we walked to the car I was shaking and crying. I feel much better already, like half my symptoms have just disappeared; the rest are probably drug-induced.

I identify with everything you say - your story is my story. I'm trying not to go overboard, but now I see a possible future ahead of me, stretching away, on and on, whereas before I just saw slow degeneration. Here's to life!

Parkinsons Diagnosis...
by: Anonymous

My husband was misdiagnosed too. After 8 years a new doctor gave him a CAT scan that proved he doesn't have it.

This sure changes your life. We made so many decisions we never would have made and our lives are changed forever.

Misdiagnosed with Parkinson's Disease...
by: Anonymous

I (31 yr old male) was diagnosed with Parkinson's Disease when I was 26 years old and continue to be on 3-4 medications that seldom reduce my PD symptoms. Ever since I was diagnosed with PD there has always been a little bit of thought that my lower back pain had something to do with my PD symptoms, but never once did a doctor look into it when I told them.

After reading your story I still have hope that I DON'T HAVE PARKINSON'S DISEASE and that my back problems can be concentrated on. Your story touched me so much because as I was reading, it was as if someone wrote a story about myself. Every scenario you mentioned (other than the Dr. telling me that I don't have PD-which I hope will happen :), I related to.

I hope all is well with you and you were able to get your life back the way it use to be before your misdiagnosis! God Bless.

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