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Lahey Study

PostPosted: February 8th, 2018, 8:39 am
by GotTheTwitchies
It looks like Lahey Clinic (near Boston) is doing a study: ... rials.aspx

I am signing up. After a relatively long remission (still with some minor twitches), my symptoms have returned with a vengeance. :( In addition to twitches, I have been having spasms behind one knee (more that a twitch - these HURT) and cramps/spasms in the arch of one foot. This sucks. The study is not going to help - it's not a drug/treatment trial - but I feel like I am doing something.

Other comments:
I wonder if the symptoms have been exacerbated by the flu shot I got recently.
I was taking a break from my regular bloodletting (i.e., Red Cross blood donation). That seems to have been a mistake and I will go on Monday.

Re: Lahey Study

PostPosted: March 27th, 2018, 8:35 pm
by jey
When you say "long remission" does that mean you didn't twitch at all during your remission?
I've had BFS since 2009 and I have learned to live & deal with it. During times of stress or lack of sleep, it tends to intensify, but otherwise a benign condition, as of now.
I am concerned however that due to the BFS, my chances of coming down with Parkinson's later in life will be greater than someone who doesn't have BFS.