Discussions By Condition: I cannot get a diagnosis.

3 yrs diagnosed with Parkinson's. NOW being told it's NOT?!?

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: irisheyes
  • January 21, 2014
  • 06:39 AM

Three years ago my neurologist was diagnosed with Parkinson's Disease. After years of increasing struggles with my symptoms...head tremor, lip tremor, digestive issues, numerous falls I was sent to a MAJOR Neurological Center for evaluation. What a JOKE that was. Brief general health questions, no questions on current symptoms (did not want to see the list I brought with me), simple neuro exam (touch your nose with your finger), had me walk the hall, then try to keep standing while neuro tried to push me forward. Way less than 1 hour exam (supposed to be a 2 hr appt.). Then this "specialist" says... "You don't have Parkinson's". (Don't get me started on what a cold hearted person this doc was!!!)

Sooooo...I ask, "Then what on earth is going on with me?" No answer. Several unanswered questions by both my husband & I - I asked her, "You ARE a neurologist, right?". She said she was. By now crying, but through my sobs I ask her what is wrong with me? What else could this be?" NO ANSWER.

We drove over 100 miles to see this doc. I expected a very extensive exam. I brought files on all doctor appts. and therapies I have completed. She did not want me to so much as pull one file out - including my "timeline".

Cannot get into see my local neuro for another 5 weeks. (Oh how a 15 minute phone call from her would calm me down! Simply unheard of these days.)

Your opinions & experiences, PLEASE! What else mimics Parkinson's? Has this happened to you? I don't care what the "label" is. I just want to know which battle I am fighting & what can be done to help with the numerous symptoms I must live with. (I had to take an early retirement due to my health last year!) HELP!!!

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5 Replies:

  • A friend had a similar experience to yours. Diagnoses was Parkinson's. Later he found out he had Lyme disease. We do not know if the Lyme caused the Parkinson's, or if he just has Lyme disease. You should get tested for Lyme disease with Igenex labs which has a much more sensitive test then a regular Lyme panel at your doctor (which often doesn't pick it up). Likely this will be an out-of-pocket expense. Best of luck.
    Anonymous 1 Replies
    • February 5, 2014
    • 05:32 AM
    • 0
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  • This is the same thing I am going through. I am off balanced, stumble while I walk. I have difficultly walking up and down stairs. I have difficulty speaking, chewing and swallowing. I have abnormal face movements. My muscles feel weak, I go to the doctors with a list of symptoms which they never looked at. I was diagnosed with a conversion order which means I am mentally creating these physical issues despite having cerebellar atrophy on last MRI. They won't consider Ataxia
    Anonymous 0 Replies
    • February 24, 2014
    • 07:25 PM
    • 1
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  • Essential tremors can mimic Parkinson's. I had them till I found that melatonin is a central nervous system restoration hormone and started taking it daily. Tremors gone. Google melatonin and inflammation. There is an article that discusses melatonin can prevent and reverse tremors even Parkinson's. Medical article.
    Anonymous 0 Replies Flag this Response
  • Main Symptoms:.

    Massive tremors in RHS arm, leg and hand. Head was shaking off and on for about 2 weeks. Bruise feeling on top of legs near hips But on both sides, seizures like episodes and 2 black-outs, eyes sensitive to light and ears to noise, lethargic during day and can't sleep during day, even though I feel very exhausted, loss of balance when getting out of chair and bed, going to toilet more for urine and pain RHS under rib cage and bloated stomach. Slurred speech at times and can't find correct word to use in sentence, then I stutter sometimes, biting the tip of tongue, not that hungry, drooping eyelids, short deep breathes and very tired after very little exercise, strained stomach muscles when trying to go to number twos, massive pain at back of head, had very scaly hands about 6 weeks ago and fingernails have vertices lines on them, woke up confused the other night, but was only maybe asleep for 3-5 minutes. No arm swing when walking on RHS. Shuffling feet when walking.
    Anonymous 0 Replies
    • December 2, 2015
    • 02:59 AM
    • 0
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  • Falling out of bed during sleep and acting out dreams with arms and legs. Sharp pains in hands, arms and massive cramp in RHS leg last night in bed. I have like a cogwheel motion when going to grab things, my RHS leg doesn't want to lift into the passenger side of car, but the brain is telling my leg to lift up. Also I freeze after getting out of chair, before I start walking. I fell off steps and fell full force onto my LHS
    Anonymous 0 Replies
    • December 2, 2015
    • 03:01 AM
    • 0
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