Neuro, EMG Clear - Yay! BFS not Acknowledged

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mommyLDN

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All done with the Neuro, EMG, all clear, no signs of ALS, Pinched Nerve in back, or Neuropothy. Woot!!! Yeahhhhh!!!!!! And he said if my ankle clonus stops or slows way down at night, then its not pathological. The one thing that bothers me about this guy that I see is that he is very smart and a little *beep*, but very thourow and compasionate, but with all that, he refuses to acknowledge BFS as a diagnosis. I have brought it up at the last 3 visits, and every time the word comes out of my mouth he automaticly gets this smurk on his face. What is that?? I asked him if he had to study it at all when he was in school (wich I'm sure was at least 15 yrs ago, or maybe more, he is 46 now) and he said "uh no". I dont get it, how can there be this many people with this many simular symptoms, and it not be recognized by all neurologist. He does acknowledge that lots of people get benign twitching or twitches, but doesnt seem to be aware of all the other symptoms that come along with it that causes it to be an actual condition. HMMMM???? I dont get it. Any opinions welcome, and I could probly handle a couple "I told you sosss".
 
Not all doctors acknowledge BFS as an actual condition. Although really, does it matter? There's no difference between having BFS and having benign fasciculations. It's just a matter of whether they feel like writing that as your diagnosis or not. Either way it means your twitches are harmless and that it's time to chill the f out. :D) Look at it logically. If there really were a condition that is harmless and is never going to hurt anyone, why would a doctor study it? Look at it from his point of view. "Uh, no" is the proper answer for him to give. Personally I don't want doctors and researchers wasting their time and money on BFS. Go cure the debilitating illnesses. BFS is mostly a mental "disease".BFS, benign fasciculations, twitches, shmitches, it's all the same. And yes, we all told you so. Trust us next time, we're good at this. :cool:
 
Congrats on the normal EMG. Didn't I tell you that you would be fine? I think alot of doctors aren't familiar with BFS or Peripheral Nerve Hyperexcitability (whatever you want to call it) but it is a real condition. Now you can realx. Glad it all worked out for you.
 
Thanks Barbie, and "O", appreciate you guys stoping by to see how it went, and glad I was able to post good news, Now if I can just figure out where I left my life..?? LOL
 
Thank you Rob, yes I will take that beer now, lol, and no I wont be second guessing, just hard to put the anxiety to bed when it has been such a part of my life for the past several months, I dont know what to do with my time now, lol. I'll figure it out :LOL: Thanks for all your support Rob, seriously, you really helped me out during a time when I was finding it hard to smile, but you made it happen anyway, cheers to you as well. Take care all :D)
 
LMAO Mandrake, erectile dysfunction doesnt work for me, I'm not equipt for that one, LOL. I do still have cancer on the brain somewhat but I'm trying really hard to bury that one with the info my neuro gave me today. But thanks for trying to share your collection of worriesome diseases. I know where to go if I need help coming up with one more to stress over. Thanks for the laugh :LOL: I'd like to find a way to do more of that now. Take careRobynn
 
Thank you Runningbear, I really appreciate all your kind words and support through all this and please stay in touch, and yes me and my family are very happy today, we are going to be smiling alot ourselves hopfully alot more in the days to come. Thank you again, take care :D)
 
Even though we talked just a little while ago let me again congratulate you on your clean emg, not that I doubted it would be clean for a second. Now go out and celebrate a little and try to put the anxiety behind you. Please don't focus on cancer, pls, or anything else just start living again and being happy. Enjoy your family and friends.Mary
 
Thank you Mary, and that is my plan. Thank you for all the long talks when I didnt have anyone to talk to. You have really been a great friend and I'm here if you ever need someone.
 
Excellent result Mommy. Now just relax and remember this feeling when you are down. BFS is a pain ( or twitch) in the butt and you have up and down days but you will cope'no worries' as we say in aus'cheers..and yes I'll have a beer ( or two) as well ;) Rodger
 
LMAO Mario, come on now, LOL. Thanks Aussie for the support and yes relax is just what I'm trying to do now. Big load off my shoulders. Now if I can just figure out what is causing my ankle to freeze up I'll be good, is this a symptom nobody told me about?? LOL
 
Hey Robynn--Didn't I TELL you , over a week ago--on the phone..."You do NOT have A*-*-!" What did I ge for this....attempt at reassuring you? :unsure: You said..."Well, you don;t believe me, I guess there;s no hope!"...and you.....HUNG UP on me! :eek: Of all the people I talked with over the phone or messaged---your symptoms were the most assuredly NOT .."that disease"-!Anyway--congrats---& don't "substitute" a new disease! ;)
 
43RichyThe43rd, why would you even feel it nessesary to put that conversation on here, that was between you and I and you know I was in a very dark, scary place, and I needed a friend. How many times did I put my own anxiety aside to talk to about your symptoms that you were freaking out about. ALOT!! I hung up on you because you started to sound like you were tired of trying to talk to me, like it was taking to much out of you, when in all reality we always spent way more time talking about your symptoms. I would have never put that crap out in public on here the way you just did, but since you did, I will say, U really need to work on your people skills 43RichyThe43rd. Its not always about you and your symptoms. Alot of people on here are really having a hard time dealing with this crap of a syndrome, and you are not a very good listener 43RichyThe43rd. And why would you try to sound like you were so sure I dont have *** when you couldnt even calm down about your own freaky symptoms. And you got to go to Mayo!! Who keeps freaking out after they have had that kind of workup and been told they are all clear?? Dont broadcast our personal conversations please. Take Care
 
Thanks DD, sorry your brain is twitching, lol, Mine feels frozen, kind of shell shocked, for the past 6 months of my life I have been convinced I am dyeing of a horrible neurological disease of some sort, MS, GBS, ALS, and even lost a lot of sleep over possibly having a progressive neuropaty of some sort, all of wich have not been founded. So I am just sitting here trying to remember where I left off with my life and trying to figure out how to go back to trying to live and survive. :oops: I really think this experience traumatized me to a point, but at the same time made me realize that tomorrow is never promised. I just have to find the energy to do something with my second chance, LOL. Thank you for your supporting and kind words, some of the best souls that are walking this earth are rite here on this site, Take Care DD, and stay in touch.
 

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