How many doctors did you see to get a diagnosis?

[Mace]

My family doctor diagnosed my tremor as essential tremor.  I went to a neurologist and they also said essential tremor.   After another year I went to a different neurologist who diagnosed PD and has been tearing it for about 9 mos.

[Troy]

4, over the course of two years. I initially feared the worst (ALS) and then began to suspect EOPD as doctors ruled out other diseases and tended to other possibilities (pinched nerve, etc.). Without my saying anything with regard to my own suspicions, my pcp began to suspect EOPD one year in (maybe sooner). The problem was that my non-motor symptoms (electrical nerve pain, for example) hit first and my tremor is (was) atypical (it’s more typical now), throwing everyone for a loop. Finally, after two years, a lack of consensus and so many te$t$ later, my pcp diagnosed after I developed dystonia. He put me on l-dopa and lyrica and like magic, we got the symptoms managed (at least for now). While I don’t mind the lesson in vulnerable and patient perseverance, far too often I did not feel listened to by the experts (aside from my pcp). It was not a good experience. After reading about what your Dad went through, it seems as though difficulty in securing a diagnosis may be more common than what I thought. Thank you for the helpful insight.

[John H]

My mother had PD. My wife made the first diagnosis. I lost my smell 10-12 years before I was diagnose. My wife told me that I was scuffling my feet like my mother, my posture was not correct. My handwriting was starting to get bad. I follow up on her advice and visited a neurologist for the diagnoses.

[Mary Beth Skylis]

Troy – I often get frustrated with what we’re able to learn from the “experts” too. I feel grateful that Dad has a diagnosis but we seem to live in a society where we treat the symptoms instead of the causes.

I’m glad that you were able to find some answers. Have you been able to find ways to manage some of the symptoms?

[Jo S.]

I was diagnosed with essential tremor by a general neurologist about twenty to twenty-five years ago. However, I had many prodromal symptoms even before the tremor appeared. I knew that all these symptoms had to be related in some way, even though they seemed entirely different from each other. I saw many, many doctors (mostly gastroenterologists) over the years — I’ve lost count of how many I saw. But it took over a couple of decades until I was finally diagnosed. Looking back now, I guess that’s not necessarily a bad thing, as it hopefully means the progression of my PD is and has been very slow.

[Lisa]

It sounds like I was fortunate, as I received a diagnosis on my first visit.  I was seeing a Physical Therapist and she told me she thought my problems were neurological.  She contacted my Dr. who referred me to a neurologist and on my first visit, after he examined me, he made a diagnosis.  I was a bit surprised as it was such a quick diagnosis and I aske how sure he was and he said 100%.  But, to be sure, they did a brain MRI which was clear, then I had a DAT scan which confirmed I have Parkinson’s.   I hardly had time to worry what was wrong with me.  Some of my early symptoms I chalked up to age, even though I’m only in my mid 50’s.  I was wrong.  I feel for those of you that had to jump through hoops to get a diagnosis.

[Louis Skip Sander]

Two. I told a CRNP at my PCP that my hand was trembling as I ate breakfast cereal. She suspected PD and referred me to a neurologist. After three visits with him, he made the diagnosis. It took about ten months from first symptom to diagnosis.