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Looking Back - Your Early Warning Signs
Parkinson's Disease | Last Active: Jun 21 12:48am | Replies (43)Comment receiving replies
I have OH and postprandial hypotension. Also, tremor, sore, stiff hands, restless legs, daytime grogginess, insomnia, urinary symptoms, and palpitations. I just had a Syn-One test for synucleinopathy by skin biopsy. My concern is MSA, which is even worse than PD. The test is suppose to be fairly accurate for PD MSA, PAF, and I think for REM sleep disorder too. Since they already dxed you with RBD that test may not offer you any usable info against PD. I pray that soon they will have treatments for all of these diseases, I’ve read there are some promising things in the pipeline, and for someone who is years away from getting sick, and if you do, there may be good treatments maybe even a CURE! That would be a miracle in my opinion. How did you figure out you needed to get tested for RBD? I’ve read lots of folks who have it, thought it was just the way they were and not a problem.
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Well, what prompted me to tell my doctor was the increase in frequency and severity of my "episodes" (yelling, punching, kicking, etc).
The first time I ever jumped completely out of bed (to a standing position, fully away by that point), I thought "huh, that was odd." But, I didn't think it meant anything was seriously wrong. Figured I was just a restless sleeper. In those days, I was only gently punching, kicking, or vocalizing 1 night every couple months, so it didn't strike me as odd at all.
Fast forward a few years and the episodes had increased in frequency to 15+ nights per month (I started keeping a journal). The severity had increased too, with me shouting at full-volume some nights, punching so hard I damaged my rotator cuff, etc. Then, I had 1 more episode of jumping completely out of bed. It all was making my girlfriend's life hell.
THAT was when I finally told my primary care doc about it and when I learned the term REM Sleep Behavior Disorder. Then, Dr. Google filled me in on the wonderful prospect of it developing into PD, MSA, or Lewy Body Dementia.