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Monday, April 2, 2012

The Letter (How I finally got diagnosed with Parkinson's Disease)

I have often made reference to the fact it took more than EIGHT years for me to get diagnosed with Parkinson's Disease.  Below is the actual letter I sent to every Neurologist in Arizona during the summer of 2007.  I sent approximately 5 per week and started alphabetically.  I got their names from a Medical Board website.  I only heard back from ONE of them, Dr Zonis, the last letter I sent.  I almost didn't send the last few, I was so disappointed in getting no responses, but I had to, I was getting much worse every single day.  I was just weeks away from being in a wheelchair, yes, it was that bad.  




July, Aug, 2007 (I updated the dates as I sent them out)


Hello,


I am looking for a neurologist who might be able to help me with my symptoms.  I am slowly losing dexterity/coordination of my right hand/arm.  I am a 47 year old righthanded white female in good health otherwise.  This problem started about 8 years ago, shortly after I had a repetitive motion injury (never properly diagnosed) involving my right arm.  The injury was to the area between my right shoulder blade and spine.  Over the years I have had x-rays, chest CT, MRI from brain to t-spine, all kinds of blood tests, EKG, etc. with no help.  I've seen 3 orthopedics docs, a back specialist, mutiple internists and chiropractors.  I have copies of most of the past reports.  Here is the history:


Late 98', repetitive motion injury (quit job that caused injury)  Dr. prescribed home PT which I did for a year
Summer 99, went to work one day and could no longer double click my computer mouse with right hand
Late '99, started having trouble writing
early 2000, tremor started in right hand, by end of year I was doing most things left-handed because tremor so bad
2001, saw a bunch of Dr's and had lots of tests, nothing
2002-03, tremor worse, right hand/arm never feels relaxed
2004, decided to focus on tremor, more Dr's and tests, Diagnosis of Essential Tremor, began Propranolol
Some improvement with dexterity, though I still couldn't right click a mouse and my hand/arm still never feels relaxed
2005 to present  Tremor under control with minimum meds (Dr. lowered dose because my heart beat was too slow)
Having more dexterity problems, trouble buttoning buttons, using scissors, tieing bows, cutting meat (can't seem to coordinate both pushing down and going back and forth), writing (it takes forever to sign my name), brushing teeth (I hold the toothbrush still and move my head).  It seems like I can do something one day and then next I can't, and I never get it back.  I do alot left handed, but try to force myself to use the right one.  My arm/hand never feel relaxed and my arm doesn't swing when I walk, it just hangs straight down.  I have a tendency to hold my arm/hand like people do who are in vegetative state, I guess I'm trying to relax it.  I have no numbness or tingling sensation and have not lost strength, I still pick up heavy items right handed.  It seems like I feel best right after sleeping and it gets worse as the day goes on.


Also, a few years ago, I started to get a sensation occasionally in my right foot that my toes were being squeezed or curled under.  This sensation occurs daily now and I don't wear tight shoes, in fact, when I get the sensation and look, they look the same as the left toes.  I also seem to have trouble tapping my right foot and when I walk, my gait seems awkward, like my right leg is thudding down.  I don't know if this is related to my right arm or not.  I also startle easily and my husband says my reflexes are getting slower.


If you think you can help, please have someone contact me.  I quit working several years ago when my husband retired, I just couldn't physically do my job anymore.  I have no health insurance and we earn a 'little too much' for me to qualify for AZ's plan, my husband gets Medicare.  If you don't think you can help, maybe you could pass this on to someone who might.


Sincerely,


Beverly Ribaudo




The only thing I left out of the medical history was the 2 Neurologists I had already seen.  I didn't want to prejudice the prospective new one.  


The first Neurologist I saw, in 2002, was my Father's in Florida (Dad had Parkinson's), his exact words were "Don't waste my time, I can't help you, your problem isn't neurological". Oops, he was wrong.


The second one, in 2004, diagnosed the Essential Tremor and point blank told me it was definitely NOT Parkinson's. He also said there was no need for follow up visit.  He was in Colorado. Many years later, I found in his notes he had written (some rigidity present in right leg, Young Onset PD?), so why did he say definitely not PD?


I got lucky with Dr Zonis but at what price.  I had been unable to work since 2002 and IF either one of the first 2 neurologists I saw had got it right, my disability check would most likely be twice as much as it is.


The most interesting thing I've learned recently is the upper back pain was probably my first symptom, and yet, the pain seemed to cause the most confusion with the Neurologist's I saw.


My point is, don't give up.  There is a Dr Z for everyone out there, just keep searching.
  
I submitted a video of The Letter to the Neuro Film Festival in 2011, here it is:


You can find all my videos on my YouTube channel:
Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

11 comments:

  1. Have had a similar experience, but in reverse. I was diagnosed with Y-O Parkinsons by a neurologist at Emory University (Atlanta) in an exam that lasted less than 10 minutes. She saw me three more times and even defended her dx with the chief of neurology. Two years later, after she went to another medical center, the chief of neuro ordered the DaTScan, revealing i had normal dopamine levels==no PD. Now I can't find anyone who wants to bother with my illness or how to solve the problems it's causing. j

    Why is it so hard to find someone who is going to listen to us?

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  2. My most prominent symptom is back pain, although in hind sight I had a tremor a couple of months before the pain began as well as issues with my right leg while climbing stairs. My osteopath whom I had been seeing for more than 15 years was the first one who figured something neurological was happening. The first neurologist I went to told me I had essential tremor and the back pain was not related. When I got a second opinion, PD was confirmed. I was 50 years old at the time of diagnosis. That was three years ago. Back pain is still my biggest issue, but with medication it is not as bad as it was. I am thankful that I live in Canada and have a great medical system.

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  3. You seem to describe issues like my dad you are brave and I am still searching for the kind doctor you found Sherri

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  4. My dad was mis-diagnosed too, and it pissed him off! the more folks I meet, the more I find out that this is not at all uncommon.

    Here's his story (and mine) http://www.fiftytofiftyatfifty.blogspot.com/2011/11/fifty-weeks-to-fifty-miles-at-fifty.html

    Thanks for all you do!
    Ned Barrett

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  5. My story is here
    http://theparkinsonsparadigm.blogspot.com/2012/10/i-got-hippy-hippy-shake.html

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  6. This is almost exactly what happened to me. I saw so many doctors, had so many tests. My first neurologist said"definitely not Parkinson's. My current Neurologist, a wonderful doctor said not 5 minutes into my first appointment "of course it's Parkinson's. What did they think it was?' I don't understand how with so many symptoms of PD, someone could be treated this way. And I don't think that they realize the scars that they create. I think we know ourselves better than they think. I was told that my right side tremor was stress induced or 'psychogenic'. Is that possible?
    Nadine

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  7. Wow! That's just crazy.
    Robyn

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  8. Fantastic post, Bev! Just goes to show how very difficult it is to get a correct diagnosis, unless you present 'standard'! Hope it's some comfort to know that you are unique in so many ways :)

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  9. Doctors, even some Neurologists don't seem to know how to put the symptoms we describe together and without tests available yet to prove one has Parkinson's many of us are labeled incorrectly. This in turn means we do not receive the meds that would make our lives a little easier as soon as we should/could. So glad you didn't give up and found Doctor "Z".
    Su

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  10. I've been fussing with doctors, labs, meds & other tests since 1997 (I was 26/27 @ the time) - unless you count the loss of my sense of smell (+/- 1991). I'm so disgusted w/ all the crappy "bedside manner" - complete ignorance & lack of care or compassion.
    Judy

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  11. Man I'm sorry for your circumstance. A relative of mine dealt with Parkinsons and never was treated (or misdiagnosed) in the manner that you were. At least you were able to find the right doctor in the end but still, that's horrifying.

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