Well, I'm off the Mayo Clinic in Jacksonville, FL next week. My first appt is Tuesday morning and they've told me that I could either be done on Tuesday, OR I might have to stay the entire week depending on what they find. My guess is that they're going to test the *beep* out of me.. haha.So why am I going to Mayo? I've been twitching all over for 9 months. When BFS was at its worst for me (back in November) I enrolled in a mind/body course to help with anxiety. The course was very helpful. After 8 weeks I had learned a lot about how to handle the mental part of BFS but my overall anxiety was still high... it just takes time to bring it down. During my exit interview, they asked me "What would it take for you to be able to let go of the anxiety that comes with your physical symptoms?". I answered the same way I think all of you would answer, "It would take 100% reassurance that this is not harming me." They told me that although nothing is 100% in medicine and it is unlikely I would ever get that, they thought I should go to the Mayo Clinic for their opinion. Why? Because if I had both Mass General Hospital and the Mayo Clinic telling me that my symptoms are benign, then maybe that would be enough for me to just 'let it go'. I agreed. That would be the closest I could get to "100% reassurance" so I booked my trip. My identical twin brother Mike is coming with me. He does not have any symptoms of BFS but he has been right there with me through all of this and who knows, maybe it'll be helpful having him there... a carbon copy of myself minus the twitching.So here I am, 9 months into my twitching with my flight to Jacksonville just days away. My anxiety is MUCH better these days. I don't know if its due to the relaxation techniques I learned from Mass General, the passage of time, or the Celexa that I started in December. Its probably a combo of all three. But I'm enjoying life more these days and don't worry about my symptoms nearly as much. Deep down, I truly believe they are benign. I twitch all over. Head to toe including my tongue. I get fluttering all day. If I lay in bed, I can feel my muscles just flutter, twitch, pop, machine gun. If I'm working at my desk, my bicep will pop continuously or my shoulder and back will flutter depending on my body position. My lower right eyelid has been twitching nearly continuously for a month now. Every kind of twitch I've read on this board, I get them. It will be easy for me to show them to Mayo, just as I have done at Mass General. I can even show my tongue twitches if needed. I don't believe that I need to go to Mayo next week, but I made a promise to myself in November that I would go no matter what. If anything, I want to do my part to get answers for everyone on this board who struggles with anxiety that comes with this madness. So if you have a question that you'd like me to ask, please respond. I'll do my best to ask all the questions I've gathered from my fellow BFS'ers. I will report back next week with everything they tell me. It might be a long report if I'm there for the full week! -Matt
Off to Mayo for BFS Testing
- Thread starter BobJazzy
- Start date
DesertKnight
Well-known member
Hey Matt, it's great to hear its finally time for this trip! I'm happy you have found the right ways to deal with your anxiety, which I think we can all agree makes living with this much easier. I look forward to finding out what the doctors have to say...hopefully you don't puzzle them too bad! Thanks for being a guinea pig for the rest of us. 
Tell them you have a boatload of friends who (to varying degrees) are like you and looking forward to hearing their findings. It's great your twin can be there with you as well! Wishing you the very best of luck and hoping and praying for an informative and anxiety free week up ahead!Frances
Tell them you have a boatload of friends who (to varying degrees) are like you and looking forward to hearing their findings. It's great your twin can be there with you as well! Wishing you the very best of luck and hoping and praying for an informative and anxiety free week up ahead!FrancesI'm sure the reassurance you're going to get from Mayo will help a lot with the anxiety. I know just how much better I felt when I had 2 neurologists tell me it was BFS and that there was nothing horrible that came along with the BFS.I have considered some relaxation classes for my anxiety. Do they help? I've looked for classes in my area, but haven't found any so far. I might have to settle for classes from a book or from something I find online. My anxiety is always at it's worse this time of year. My wife suddenly, and unexpectedley passed away 4 years ago in February. The extra anxiety that goes along with that is not fun to deal with. Anxiety on top of anxiety!!!I hope that yours is able to be lowered with the Mayo's reassurance! Sometimes I wonder how much of the BFS is heightened because of anxiety? I find when my anxiety is high than usual (as it is NOW) that the symproms are worse - more twitching/tremors, now I have the leg/arm pain/cramping...and sometimes itching that drives me iNsAne!!! So, maybe that is a question for them: can we significantly lower/lessen the symptoms by controlling our anxiety?Have a safe trip...looking forward to reading your post when you get back!
Hello my dear friend,I can't wait for you to get some answers to your questions; you deserve it so much. I agree with you, if we could know for sure, without a doubt, that our condition is benign, what a relief it would be... but anyway, I hope everything will go well for you next week.If I were in your situation, I'd have 1000 questions to ask them, but honestly, I don't think they would be able to answer half of them anyway (e.g. why do we twitch lol?) I remember you telling me that you could induce your twitches (which is my case too), so why don't you ask them how come we can twitche randomly while at rest and also provoke our twitches (e.g. when we sneeze)? I know I've asked you and the other people here this question one hundred times, but I don't understand why both can happen to the same person since this seems to be two completely different mechanisms. Also, in a truly benign condition, would we experience breaks sometimes (hours or days without this twitching stuff)? Because some of us, especially me, literally twitche all the time... so what would explain that difference (between the ones that twitche once in a while on a (more or less) regular basis, and the others that are real machineguns?) I mean, if we all had about the same problem (nerves somehow messed up), wouldn't we have about the same symptoms (frequency and severity)?Oh... a last question: if a cramp and a twitche occur in the same muscle at the same time, should we be concerned? (just in case it happens in the future, it could be good to know....) Ok Matt, don't feel pressured to ask any of that stuff, I'm sure you already have prepared a bunch of questions... so I'm just going to wish you a nice trip with your brother and I'm also wishing you good luck! I can't wait to read your report when you'll come back!
GlitterFountain
Active member
I would be really interested in what they have to say.Regards Martin
I went to the Cleveland Clinic and it did put my mind at ease. So, I wish you much luck with this. They gave me a diagnosis of "myoclonus" and said the reasons for it are unknown. It has central nervous system origins. Bring copies of any tests you've already had done. This will eliminate the need for duplicate testing. They will probably do some advanced bloodwork not available elsewhere.
Lovitch123
Active member
Matt I'm thinking of you today 
All will be good I know it! I can't wait to talk to you and get all the goods. Ash 
)
All will be good I know it! I can't wait to talk to you and get all the goods. Ash )