BFS or Unnamed Diseases?

Highlights Only
S

seadragonsovereign

Well-known member
I am in the initial phases of what I hope is BFS only and not one of the "shall be unnamed" diseases - all of which I think I have at one time or another. It started with me about 3 or 4 months ago with a shaking (to and fro) right ring finger. Since then, the side to side twitching has extended to my big toes and sometimes my other ring finger. The twitching started about a month or so ago and it is non-stop - hand, eyelid, calves, quads, arms, feet, abdomen - you name it, I've got the twitch. It won't stop! I first saw my GP, who said it was essential tremor but referred me to a neurologist to check. I went to the neurologist last Friday and of course I didn't flare up in the half hour or so I was in there. I explained everything to him, of course, and he did a bunch of strength/hand-eye stuff. He said my side to side twitching was dystonia and ordered some blood/urine samples to find underlying reason. He didn't say anything about the twitching and I come back in three weeks - I think to go over the blood/urine chem and do an EG on muscles. He didn't really nix any other thing it might be, so it left me more than a little hysterical. He also put me on buspirone for anxiety (at my request), which leads me into my primary question:Even if I can get it out of my head that all I have is BFS, how does anyone mentally handle the non-stop twitching? Since my first encounter with the neurologist, the twitching seems to have intensified and I feel like I'm losing control of myself physically. As to my state of mind, this site has helped tremendously. I can almost but not quite convince myself that I have BFS and not worse stuff. However, the mind is a terrible thing, huh? Every little clumsy thing I do, I think, what is that? MS? Parkinson's? ALS? (sorry named them!) I can't help it! I don't think I'm losing strength anywhere (again, almost but not quite convinced myself), but my anxiety levels are so high that I may be creating the situations. I can't think straight and am becoming a basket case. I am 50 and in pretty good health otherwise. Do I need something stronger for panic/anxiety? I read that it can take buspirone a while to get going. I basically live right now minute to minute. Again, thanks for all of your wonderful posts. I wish and pray for the best for anyone on this site as I know what you are going through.
 
Welcome to the board. Love your username!I have a little bit of good news. The nonstop twitching fades to the background over time, to the point where you don't notice it as much, or if you do notice, it doesn't bother you anymore. However, you are still fairly new to this. I don't expect that you'll be saying, "Twitches? What twitches?" right away. Once your medication kicks in (4 to 6 weeks from now) you will probably be much less bothered by the twitches.Keep us posted on your progress and appointments.
 
Hey there dear,I am so sorry you are going through this. In many ways you are at the worst stage right now. Let me just say this... if your neurologist was concerned that this was anything [/i]serious[/i] I think he would be doing more tests right away, not three weeks from now. It could be just me, but it seems like if they suspected anything malicious, they would be more urgent in their work.Now, everything your describing sounds exactly like BFS. You have no weakness and you are not falling down/dropping things constantly (sometimes dropping something doesn't count :) ) BFS presents with all over twitching... and it can be any kind of twitching, thumpers, little twitches, hot spots (constant twitches in certain areas), spasm-like twitches, and vibrating twitches. It can come with a lot of other things too, so if this is all you are experiencing so far, take a deep breath and feel fortunate because you could have all the other super annoying stuff too :D) Check out BFS in a nutshell to learn more about it, if you haven't already... and just try to relax (I know this is almost impossible) until you see the doctor again. I remember this, and I go through it sometimes too... where every moment is a battle, its tough, but we are all here to help. Take care of yourself!Megan
 
Having read tens of thousands of posts, and having personally investigated many claims by people who have convinced themselves that they had good reason to worry, I can only tell you two things. First, your onset is 100% compatible with BFS, and second, if I were you, I wouldn’t be worried at all. Believing that or not is up to you. :)
 
What a great name:))) Welcome to the Board...sorry it is not a more exciting and fun condition but it is interesting none the less ;) Dystonia as you have described it...I am not sure that I would necessarily have diagnosed that but at any rate a focal dystonia if we are being literal is exactly what you have described in your fingers. It is generally benign but should have some labs drawn to rule out anything metabolic...umm chemical in your system. If you have no history of any funky diseases in your family...and before we go on....dystonia has nothing to do with Parkinsons, MS or ALS ok?...then I have no reason to believe that based on what you described you have anything to worry about. It is stricly by the book to run these tests. Benign essestial tremor can also make you move like you described AND is not biggie either...very annoying but no real issue and is made worse by ANXIETY :eek: go figure :LOL: Both of these "issues" are also not uncommon in any way shape or form to BFS. I would definitely read BFS in a nutshell and I would type in to the search engine on this forum : tremor, movement etc and I am pretty darn certain you will find a ton of us who have had what you describe.As far as the twitching all the time...you will learn to live with it as soon as you are not obsessing over it. I honestly, when I am not flaring, have to concentrate sometimes to feel a twitch. Believe it or not ...I am happy when I twitch now because in my mind it means that all the other stuff I feel is still just this little ole condition.Take a deep breath and try not to worry too much kiddo it will just make everything feel worse.Be well,Kit
 
Thanks everyone for the quick replies! Makes me feel a little better and every little bit helps at this stage. I'm an engineer by profession and you would think I would be logical about things. But like I said the mind doesn't always respond to logic! I have dropped or mishandled a thing or two along the way. Like when I reach for something, its not quite in the place I anticipate (brush my hand up against it instead of grasping it) and when it happens, it is exaggerated a thousand-fold in my mind. All of this was conveyed to the neuro-dr. Anyway, I really really appreciate the support here. I made an appointment with my GP tomorrow to maybe get a short term solution (xanax?) until the other meds kick in. I will keep everyone posted and I will keep up with everyone else's experiences, too. Good luck to everyone. And yes one of my favorite movies of all time is the Princess Bride!
 
Hey, my hubby is an engineer too :D) .... and while he gets super annoyed with my lack of "logic" in this whole thing... he doesn't like to admit it but he gets good ol' medical anxiety himself too. None of us are immune!
 
I just want to add my two cents about not over analyzing dropping something here or there. Most people do this everyday. On the way to one of my neuro appointments, my husband dropped his water bottle. I asked him what happened and he said, "It just fell out of my hand." If I had done that I would have gone into a panic. Now I pay attention to others' behaviors and realize everyone drops things now and then. When I do it know and then it is usually because I'm thinking about something else and not fully focusing on what I'm doing. Only worry when others notice it as a problem and it starts to interfere with normal life.Krackersones
 
Hi Dreadpirateroberts.1. Welcome aboard.2. Listen to what everybody has said. They are right, you will be fine.3. About BFS. I cant really say to you anything regarding this subject, because I totally forgot about twitching and panicking. Its a non-event in my life.4. If you want to talk about serious, real and important issues like which is the best deodorant brand around or how to trim your beard properly, I AM THE GUY!!!!!5. Enjoy your life.6.Cool nickname!.7.About mentally dealing with the twitching, try to relax for a couple of days and I promise we will give you all the winning strategies for doing so, we are the real experts!!!!8. Homework for you : Go have dinner with your beautiful wife and family, forget about this stuff at least for today, try it you will feel better.Best regards,Eduardo
 
Thanks again for the support. I am seeing in all the posts that even with clean EMG's/MRI's etc that it takes a while for a person to get it that he/she is really ok. I guess part of that reason is that SOMETHING is making the tremors/twitches happen and that something is a potentially (though not bloody likely) viciously hideous unknown that we have to force down and away in our anxiety riddled minds. I, at least, feel that I am losing control of my body. First the twitches, then what? That sort of thing - even if it isn't one of the baddies causing it. Other things I have noticed with my condition is that the twitching actually causes whole limbs or hand to jerk (common?) and many times I feel horribly clumsy in walking around (bumping into things or more specifically, scraping into things like door ways) or in reaching for something. Not dropping stuff, but just in general coordination. I know that this happens to everyone but it SEEMS like its happening to me a lot more lately. SOMETHING is not right, but does BFS explain all of it? This sound familiar to anyone?In any case, I thank everyone again for their support. I have an appointment with my GP this PM to hopefully take care of the high anxiety/panic stuff until I meet with the neuro again in 2+ weeks.
 
When you are paying attention in fine detail to everything you do it is amazing how really uncoordinated we are:) BFS will do much of that as will the fact that you have yourself under a microscope. Give yourself a bit of a break and good luck this afternoon kiddo!Smooches,Kit
 
I just wanted to say, "Welcome," and that "The Princess Bride" is MY most favorite movie, as well!And, as for dropping things, gosh, my husband teases me all the time because I can't get through an hour without dropping something. LOL. Personally, I think that my tremors and ratcheting don't help the matter. (Hate that!) Obviously if my limbs are shaking, I'm going to "miscalculate" or "mishandle" from time to time. Either that, or I just have to concede that I am a klutz. I'm so glad that you found us and that you've been helped by this forum. It was salvation for me, back in the day when I first discovered it. Blessings, Sue
 
Welcome mr. pirate. Its hard to guide newcomers as they are so very anxoius. But a few advices wont hurt.1) Stay off the internet. That includes ALL sites that says ANYTHING about nerve-diseases and the like. Actually dont spend too much time on this BFS-site either as all the troubles tend to come in at the backdoor. The sum af many peoples fear stand in between the good posts. Be careful what you read for the next 1-2 years. Yes, 1-2 y e a r s. Why? Becourse its the time it takes a person in very deep anxoius troubles to somehow crawl back to life. And the sooner you get rid of your fear, the better. 2) If you are seeking answers regarding your symptoms, go see a doctor and listen to what they say. The internet does NOT give you any answers. Only sparks your fear.3) Thrust your doctors diagnosis. Just thrust them. When they give you the green light, you are fine. 4) Prepare yourself for a long journey. Be patient. VERY patient. BFS is only getting better when you dont care anymore or your stress-levels gets lower. Usually it takes people between 2-3 years to accept this condition as nothing malicious. Sometimes longer and sometimes shorter. 5) Dont stress. Take a bit easier on life. After all we are all gonna die someday and when day comes, we need to look back on a life without (too much) fear and stress.6) Do something physical. Take a walk, run or bike and do it every day. It is always good for you, and it is doing miracles for your mind.7) Remember: this is not gonna kill you. And the neuro is going to confirm that.:cool: My english isnt perfect. Please dont let that ruin your day. :oops: All the best
 
Welcome to the Board!I am fairly new to BFS also. I have it for 3 months now. Had normal EMG and neurological exam. The hardest part is the anxiety but the people on this board are great and they give you support. Whenever I get really scared I come here. Stay off internet sites!!! It will make it so much worse. Hang in there and know you are not alone.~Leslie
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top