New Member with BFS

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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New Member with BFS

Postby sibelius on May 9th, 2013, 10:53 pm

I'm a new member but have had BFS, tremors and parathesia (pins and needles in hands/feet) for 2.5 years. I've had EMG's, Brain MRI's and a host of other tests to rule out any of the big scary neurological diseases. I just wanted to post a message that you are not alone. There are many long term BFS folks out there. A few things that may help newbies:

1) Do not self diagnose. Stay clear of on-line medical sites
2) Do not spend time on the *** forums or MS forums other big, bad disease forums
3) If you have had a clean EMG you do not have ***. You are not the exception to the rule
4) Stress is not good for our condition. Excessive worrying is likely making your condition worse
5) Get as much sleep as you can and try to stay clear of caffeine and other stimulants
6) Try magnesium supplements - it helped me a little bit and won't hurt in moderation
7) Overdoing Vitamin D actually made things worse for me. Cutting back from 5000IU to 2000IU helped (once I was in my target range)
8) Do not go on a crazy spending spree because you have convinced yourself you only have about a year or two left. You will likely need those $ in retirement
9) Put things in perspective. There are people with diagnosed terminal illness that deserve our empathy. What we have in comparison is a nuisance.
10) Spending 6 months to a year worrying about something you do not have is counterproductive. You will never get that time back. You are sabatoging your own life.

I know it is difficult to process but you will learn to deal with BFS and your symptoms will become your "new normal". Over time BFS will go from high anxiety to minor nuisance. Trust the old timers on this.
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Re: New Member with BFS

Postby mwagner on May 9th, 2013, 11:42 pm

What a great post, Sibelius, with great advice. I've been twitching for almost 2 years now, and sometimes need to hear those very wise words again.

Mitra
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Re: New Member with BFS

Postby magnetizzum on October 2nd, 2013, 5:46 pm

Older post, great advice...so I bumped it..
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Re: New Member with BFS

Postby johnnythejet on October 2nd, 2013, 11:23 pm

That was a good post, thanks for bumping it. Its amusing how many people come back from twitching for years, having made many of the same mistakes as the rest of us, then give newbies the same advice the received and learned.

Happy Birthday by the way, mag.
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