Managing Anxiety and Twitches

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Karen92

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Hello all,I have not posted for a while because I have been trying to keep my anxiety in check--mostly successfully. For those of you who don't know my story I have constant all over fasciculations (scalp to little toe and every inch in between) Since Feb 2008 there has never been more than a 2 or 3 second "break" in the twitches. They are also localized in my tongue which is constantly buzzing and vibrating while at rest. I have no weakness at all and no pain.My local neuro did an EMG and nerve conduction in June which were both normal. But my tongue symptoms started soon after the visit so she then referred me to Dr. Paul Barkhaus--an *** specialist in Milwaukee. I have had a change in insurance and needed to wait until after 9/1 to see him. My appointment is Friday.I am both nervous and hopeful. Nervous for obvious reasons. He will be the one to give me the definitive diagnosis, whether good or bad. But if he tells me it is BFS I WILL believe it. I will report back here after my appointment--hopefully with good news and helpful info for all.Take care,KarenP.S. keep me in your thoughts. thank you
 
Good Luck!!! I am sure you will do great!!! Your story sounds like mine but I have had it constant since Jan 2007. I never have a break. Mine has now really started up in my tongue, too. I have not seen a neuro since it started 19 months ago--exam but no EMG. I figure after this long it has to be BSF.SueI will be looking forward to hearing about the good news you receive!!!!
 
HI!! I was just thinking about you! Isnt it something how we have this whole other life here on the site-- Anwyay, i wanted you to know that I was thinking of you ( my tongue is bugging me too ) too-- :))
 
I Karen,I hope everything goes well today and you ask a lot of questions and report us the good news!Best of luckBart
 
I have been thinking of you Karen! I just want you to know, that my tongue started to twitch as well and I freaked out. I called my neurologist at the *** clinic, and she told me to come in. I went on Wednesday and she did every test under the sun on me again - looked at my tongue and all is well. Yes, it is twitchng and swollen - but it is just BFS.I can give you more info - but I am sure your neurologist will give you all the same info as me.Karin :D)
 
nobody heard of Karen yet? Is getting me anxious, hope she posts something soon.It has to be good, she had a clean EMG and nerve conduction test in June, maybe she is celebrating !Bart
 
Hi everyone.Thanks so much for your concern. I could not find the time to post over the weekend (I have 3 kids and seldom have a moment to myself on the weekends).So Dr. Barkhaus did not give me a diagnosis. But he did say that at this time there is no degeneration and therefore no ALS. Hooray!!! He spent 3 full hours with me--he took a full history and did a very thorough clinical exam. He also did a repeat EMG on my right calf and was able to use some kind of very precise filter (?). Apparently he is one of the most qualified EMG experts in the nation. I didn't understand the terminology really but he was able to isolate tiny areas of muscle fiber. There is no degeneration or re-nervation. He also went on a "fishing expedition" as he called it where he just left the needle in there waiting for a twitch. There were several and they all looked "clean" to him. So that's all good.The only frustrating thing is that he did not give me an answer or a diagnosis. He thought my twitches were unusually frequent. He also said (and you all won't like this) that he doesn't really like to use the term "benign fasciculation syndrome" because as a scientist he believes that there is some kind of disease process at work that has not yet been determined. He also couldn't give me a "guarantee" that nothing would ever develop. But then, none of us have guarantees right? I have high blood pressure too. Nobody is going to guarantee that as long as I take my medicine I will never have a stroke. There are no guarantees but as of now all is well and there is no reason to think it will change.So at this time, I am fine. He was also very encouraged by the fact that the fasciculations have been going on a long time with no degeneration so far. So it's time to relax, continue learning to cope with this, and take care of myself.BTW, he didn't care at all about my tongue. He said--"eh, it's just another muscle." I lecture, standing up 2-3 hours a day (I'm a professor) and he said there was "NO way" I could do that if I had ALS. He said my voice would wear out and I'd be choking on food. So for all you tongue twitchers, let it go. It is no more indicative of ALS than anything else.Sorry I'm rambling here. I've got to get back to work. But I really really appreciate all the support I've receieved here. I will continue to visit and to help give that support and encouragement to others.best,Karen
 
thanks for your post... i am glad that your appointment went well... my doc ( at johns hopkins) said the same about "i cant guarantee"-- another doc i have said he didnt like the term syndrome either but he said that i didnt have a syndrome.....it is a bummer that it is not as black and white as we all would like ( as anyone really would like ) but i think we have to figure out ways to go forward and get the potential out of our heads..( and i think that the potential for potential is not so great )-- so thanks again for keeping us all up to date on your appointment...i must have checked my computer 5 times over the weekend looking for your post...take comfort in what he said -- kind regards, bk
 
thanks for your post... i am glad that your appointment went well... my doc ( at johns hopkins) said the same about "i cant guarantee"-- another doc i have said he didnt like the term syndrome either but he said that i didnt have a syndrome.....it is a bummer that it is not as black and white as we all would like ( as anyone really would like ) but i think we have to figure out ways to go forward and get the potential out of our heads..( and i think that the potential for potential is not so great )-- so thanks again for keeping us all up to date on your appointment...i must have checked my computer 5 times over the weekend looking for your post...take comfort in what he said -- kind regards, bk
 
Mamakaren,Did the doctor suggest any more tests (blood etc) to find out a potential cause? Did he suggest any? Did he indicate whether and/or how often he has seen similar cases to yours? Did he offer you anything to do or take to address the symptoms? Krackersones
 
Sounds like a great appt to me. If you had an ALS specialist tell you that you do not have the disease, that is about as good as it gets. As for the lack of a promise, that sounds like typical procedure for these docs. My neuro (A Vanderbilt guy) told me he was 99% sure I was fine. I asked him why he would not say 100% and his response was, "I am not 100% sure about myself." My brother, who is 50 years, old started down the BFS road 5 years ago. He twitches all the time, in nearly every muscle. He is the same today as he was 5 years ago. The twitching just does not mean much unless there is something with it. The best thing about your post mamakaren is the info on the tongue. Lots of people here worry about their tongue. But if the ALS specialist from Univ. of Wisc. says it is nothing, then that should put it to rest. Univ. of Wisc. Madison docs are considered some of the very, very best.Good info and good luck to you.
 

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