1) They keep referring to a followup point. When was the follow up point exactly, where they took all these assessments (change in severity, etc)?2) Why isnt this study published anywhere?3) Is it correct that of the 120+ participants, none had complete resolution of BFS at the follow up?Thanks
Questions About Follow-Up Point & Study Results
- Thread starter BFSDiner
- Start date
The Mayo study is a bit overrated. It was just phone interview-based study (no follow up clinicals, EMG...) and only 50% or so have fasciculations more generalized. It does not even mention the frequency of fasciculations and I was told by one doctor who knew the co-author that some of them twitched 2-3 per day. It is not that detailed as for the changes in severity etc...
illeraceaccounting
Member
Twitchy Doc,From what i have gleaned over time, it seems like you have suffered from your BFS for 5 years? What is your neurologist opinion of your condition? In regard to the Mayo study, i thought the study was of 120 Mayo patients diagnosed with BFS. If so, why would someone go to Mayo if they had 2 or 3 fascics a day. I tried to go to Mayo in 2011 but was denied. From what i gather, you need a referral from your neurologist to get an appointment. I did go to the Cleveland Clinic, but Mayo denied me. It seems to me unlikely that the Mayo clinic, especially in MN, would be seeing that kind of patient and then following them up in a study.
Docen, With all due respect I believe you are incorrect. One of the criteria that each participant had to meet was that they had to have had an EMG that showed fasciculation potentials with no other evidence of denervation, etc. So if these people were only twitching 2-3 times per day, that was pretty lucky of them to catch one during the EMG.-Matt
Matt, the criterion was that their EMG was either clean or only with FP.Also as for the distribution:The distribution of fasciculations was generalized in 32 patients and restricted in 85 patients. Forty of the patients were nurses, physicians, physical therapists, or other medical professionals. So just 32 had something we have had here.
christinasgirl123
Well-known member
But well, seriously.....I think we ARE at the best place to prove that BFS is benign...just add the 4000 of this forum to the 32 