I used to have more pronounced tremors, sometimes whole body, pre-diagnoses til a few months after I was diagnosed last August. I still do have a mile tremor, usually limited to my right hand, but doesn't interfere with my functioning.
During my work-up last summer which led to my PSP diagnosis, it included a 4+ hour Neuropsyche exam. She indicated to me the type of tremors I was exhibiting was A-typical of PSP. I had also heard that from my Neurologist. They were particularly prominent last summer into early fall.
Early last fall my Neuro suggested starting me on a med to be taken at bedtime only to help with the tremor because it was a powerful med and would leave me feeling sedated during the day. Because I was chronically fatigued already, and in the process of a physical move, we agreed to wait til later in the year to revisit that option. When we did toward the end of '12, my tremors had returned to mild, meaning primarily my right (dominate) hand, but for some twitching here, there, anywhere, in my body, but it was manageable, so opted not to start that med. (Sorry, can't remember the name of it.) My tremors just haven't been much of a problem since last fall.
There is more to this event than I will post in this blog; I will create a second blog to fill in the missing pieces.
On Thursday, May 24, of the week, I awoke from a dream in which I was falling down a lot, felt like I was going to projectile vomit, and was in a hard sweat, which is unusual by itself because I don't sweat. I also notice my tremors were back as bad as they had been when they had been bad last summer/fall. Gave myself a few hours to wait to see if I felt better, but didn't, so I called my Neuro's office who told me to go to a specific hospital's E.R. and get admitted. My adult daughter drove me.
After triage, it was a few hours to get on a floor. I promise you when I say I was not anxious, or certainly over anxious, but the tremors continued to pick up in frequency and intensity. My daughter and I were having a casual conversation about current events when my hole body started tremoring/convulsing. Nothing hurt; felt absolutely numb. My legs were moving in a rhythmic pattern like I was running, and I kept pulling my right hand towards my face in a rhythmic manor. The last 30-40 minutes of this was quite violent and I only felt semi-conscious during this time period. Bottom line is I began to have tremors at 9:00 a.m. til 4:00 p.m. when the started me on an Adavan drip that started to calm them down but they didn't go away entirely.
Very fortunately, actually felt blessed, when I did get in the E.R., my male nurse couldn't have been more attentive, compassionate and interested. He said it was "your lucky day" because the E.R. Physician who was to see me was very familiar with PSP because his Mother had just passed away from it. He truly was great. Very calm. Didn't have to explain what PSP was. During a routine neuro test, he asked me to 'look up'. I couldn't and told him so. It was the first time I realized I truly can't voluntarily look up.
He, too, said, the type of tremors he saw me having were A-Typical to PSP. The stabilized me with an Adavan drip, which calmed the tremors down but didn't eliminate them. Then I was admitted for observation. I will post a separate blog about that experience, as well as some knew information I stumbled upon which might be a contributory factor to the whole PSP picture.
But...again...my question to my fellow PSP sufferers and/or their caretakers is this...do you or anyone your caring for have periodic trouble with whole body and/or severe to violent tremors? Anybody? This is a rare enough disease and so little understood, I'm thinking maybe there's a small portion of us who experience this but it goes unreported/gets lost in the shuffle. I hate to think, tho I refuse to dwell, that I may have something else going on in addition to the PSP, or possible an entirely new diagnosis in the immediate future.
I WISH someone in that E.R. either while waiting when my whole body tremors were so obvious and/or when I was in the E.R. could've/would've slapped an EEG on my head to rule in our out seizure activity.
I sure would appreciate (understated) some feedback and responses to this post. Thanks so much in advance.