NeuroTalk Support Groups - 29 years of misdiagnosis!!!

Age 37 first symptom...tremulous thumb noted by internist during a routine visit.

Age 45 formal dx of PD at a well known MDS.

Age 66 about to be re-dxd with ET.

The years in between I worked as many as I could. I stopped working November 2000 due to cognitive decline and the inability to keep track of my various projects. I spent 20 of those years participating in clinical trials, five total, the last a gene therapy brain surgery trial, and 15 years formally advocating for clinical trials. Over all of these years I have moved several times, changing MDS each time.

I have spent many years questioning my PD dx, but not to my MDS. Denial is big. No one every questioned my dx. I qualified for five trials, including brain surgery.

In the Summer of this year I saught a second opinion about my cervical spondylosis with myelopathy...what to do or not do. We spent more time talking about my horrible tremor, and head nodding...tremor I call it...than about my neck. He referred me to a regular neurologist about 45 minutes from home.

Thursday of this week I begin neurological testing...EEG and cognitive...and I believe that the end result will be ET. Misdiagnosed for 29 years.

I use to worry over this, but today I just want to know absolutely....PD with very slow progression (not totally unheard of) or ET, a correct dx...OR Lewy Body Diamentia. I prefer the ET, it will explain a lot of why I am so different from my PWP peers and friends.

Whichever, the inevitable result will be a DBS. And as odd as it may sound, I would welcome DBS yesterday!! I could use the events of today as an example. I live alone, 30 years now, so I am forced to tolerate a lot with my tremor, and curse up a storm because of it when needed.