Oldtimers Needed: Take BFS Survey

[bfhopeful2]

It is short and 100% anonymous

 

[bfhopeful2]

I just took it myself and it was very painless. I will share all data once we have enough respondants to have a decent sample size. Thanks again, I hope the information can help some people here.

 

[jsageurge]

Done. You might want to ask John V. to make it a sticky, if it's something you could leave up long-term to get a bigger sample.It would also be interesting to get the twitching distribution, like:-Limbs only-Limbs and trunk-Limbs, trunk and face

 

[bfhopeful2]

I can leave it as long as needed. I did email John, but did not get a response. Maybe if other people emailed him too we could get it done. I agree about the additional questions. I was trying to figure out casuses and treatments. So far an overwhelming amount like 80% of people that took this survey have stated that it started at the same time they were experiencing a tremendos amount of stress. Also 50% of the people reported sleep starts and insomnia also linked with anxiety. I don't beleive that anxiety is the root cause by any means. We have a long way to go. I will keep everyone informed. RIght now we have just under 20 respondents. If we had closer to a 100 I think it would be solid.

 

[bfhopeful2]

24 respondents so far. Things I noticed so far are that 72% responded that high stress issues preceded the onset of BFS symptoms. 80% of people find that their symptoms increase with stress. Over half the people that took this survey say they have found some relief. 1) How old are you? 18 to 25 12.5% 3 30 to 40 45.8% 11 40 to 50 29.2% 7 50 to 60 12.5% 3 60 to 70 0.0% 0 70 plus 0.0% 0 2) How long have you been experiencing BFS symptoms? < 6 months 12.5% 3 6 months to 1 year 25.0% 6 1 year to 2 years 20.8% 5 2 years to 5 years 16.7% 4 > 5 years 25.0% 6 3) Have you been clinically diagnosed with BFS? Yes 75.0% 18 No 25.0% 6 4)Who diagnosed you? Neurologist 83.3% 20 GP 4.2% 1 Psychiatrist 0.0% 0 Other 12.5% 3 5) What tests if any assisted your doctor in making the diagnosis? MRI 37.5% 9 EMG 58.3% 14 EEG 8.3% 2 Blood work 58.3% 14 Basic neuro exam 83.3% 20 Show repliesOther (please specify) 20.8% 5 6) What symptoms do you experience? Twitching 100.0% 24 Sleep Starts 50.0% 12 Tingling 62.5% 15 Numbness 41.7% 10 Vibrations 66.7% 16 Cramping 62.5% 15 Aches and Pains 58.3% 14 Trembling 41.7% 10 Massive spasms 25.0% 6 Anxiety 70.8% 17 Depression 16.7% 4 Insomnia 41.7% 10 Show repliesOther (please specify) 8.3% 2 7) Prior to symptom onset did you experience, use or have any of the following? High stress levels 70.8% 17 Depression 20.8% 5 SSRI Use 8.3% 2 Other antidepressant medications (MAOI etc) 4.2% 1 Anti psychotic medications 0.0% 0 Fluoroquinolone Antibiotics (Cipro, Levaquin, Floxin) 20.8% 5 Viral Infection 37.5% 9 Herpes Viral Infection 4.2% 1 Increased drug or alcohol use 8.3% 2 Insomnia or broken sleep patterns 33.3% 8 Show repliesOther (please specify) 29.2% 7 Have you found symptom relief from any of the following? Anti anxiety medications (Klonopin, Ativan etc.) 25.0% 6 Anti seizure medications (Neurontin etc.) 20.8% 5 Anti Depressants (Paxil, Zoloft, etc.) 16.7% 4 Magnesium supplements 12.5% 3 Vitamin B supplements 8.3% 2 Meditation 20.8% 5 Massage 12.5% 3 Acupuncture 4.2% 1 Warm baths 25.0% 6 Cognitive behavioral therapy 20.8% 5 Herbs and spices 0.0% 0 Exercise 37.5% 9 Yoga 8.3% 2 Good sleeping habits 25.0% 6 Any other stress relieving methods 20.8% 5 AboutBFS.com 62.5% 15 Show repliesOther (please specify) 29.2% 7 9) Have you found that any of the following increase symptoms? Stress 79.2% 19 Depression 8.3% 2 Illness 29.2% 7 Caffeine 25.0% 6 Cigarettes 16.7% 4 Exercise 16.7% 4 Medications 0.0% 0 Supplements 8.3% 2 Poor sleep 62.5% 15 Show repliesOther (please specify) 2 10) Have your BFS symptoms lessened over time? Still going strong 45.8% 11 Eased up a little but still have some 16.7% 4 Hardly ever notice anymore 12.5% 3 Gone completely 8.3% 2 Come and Go 16.7%