Mystery illness!

Posted , 4 users are following.

I've posted about this before, but we're still looking for answers!

My dad was told last year that he had Parkinson's Disease, based on a jaw and hand tremor. He went to see a specialist who then said he didn't have PD, but instead had parkinsonisms, but didn't give any indication of a root cause. We suspect it could be drug-induced due to a long prescription he's had for pregablin (this was for a different pain condition)

My dad then started developing severe almost constant headaches, brought on by cold or exertion. We wondered if it was related to the tremor in his jaw. Last week, he was given two Botox injections but it doesn't seem (so far!) to have helped much. He's now on high doses of painkillers and is feeling very miserable about it all. He can barely go out and no one seems any wiser as to what's causing this.

We're not sure what to try next?! We would love to get him out of pain so that he could be mobile again! He's had days which were so bad, he was on oral morphine.

He had a brain scan about a year ago when this all started and it didn't show up anything untoward.

Do we push for a consultation with another specialist? Do we figure out how to manage his pain? Any ideas what it could be?

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  • Posted

    Like your dad, I was first diagnosed with Parkinson's disease (by a neurologist)... but then was diagnosed (by a movement specialist) with "atypical" Parkinsonism... which in my research can be even worse and more progressive than PD. I, too, have head to toe joint/muscle stiffness and soreness...which not only causes severe fatigue, but makes it hard to walk. Like you, I feel there is more going on than Parkinson's. I am suspcious of the pesticide exposure I had just prior to my symptoms well as the mold that was just uncovered in our crawl space.  I have also been taking ambien for sleep for many years. Something caused this...and I wish the doctors knew more about such conditions. They seem to just want to prescribe meds, but not look into root causes. My MRI was also well as a spinal tap, emg and nerve conduction?!

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  • Posted


    I suffered from horrible headaches for about a week.  I thought I was going to die. 

    Headaches way worse than migraines - which I used to have. 

    The emergency room gave me a tordol injection - which used to cure my migraines.  This time I only got 6 hours of relief from "the headache". 

    Long story short - a genius psychiatrist prescribed gabapentin and addreall for me.  Headache disappeared in a little over 24 hours.  Brian fog - which I also had been suffering with - went away too.

    He saved my life. 

    I hope your Dad's health improves.



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  • Posted

    This sounds a little strange to me. Is the tremor in his had active only at rest or is it constant? I only ask as i also have a tremor in my hands & also have a jaw tremor. I find it odd that they diagnose parkinsons while nothing shows on the MRI! I has he had a FMRI? this is used to see what the blood flow is doing in the brain, i was doagnosed with FND functional neurological disorder.


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    • Posted

      Yes, the tremor in his hand is only at rest and likewise with the jaw. He chews gum constantly to keep his jaw moving! They said that PD is usually diagnosed on examination only and doesn't show up on a scan? Though they are going to book him in for another MRI and see if anything shows.

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