eyennyGlimmer
Well-known member
Hello everyone, hope all is well. I did want to come back and post this to everyone because I feel obligated and I feel maybe it will help.
I went to see another neuro for reassurance and he did the exam and this time I wrote down every single symptom I have and had and we discussed each one. For those that do not know all about my symptoms, they are internal tremors, internal vibrations, bug crawling sensations 24-7, OF COURSE twitches, shaking in certain positions or holding a limb out. Gold spots in vision that shoot downwards, I know I am forgetting some but anyway he said, ALL BFS! He said BFS does not just give you twitches, it can give you other symptoms. He said he has seen quite a few patients experience the same things and different things then I. I liked this statement because many of us question if this is BFS because of the other symptoms we have. The only thing I did not agree with him on was when he said BFS causes no pain, because Lord knows I have that and it started with BFS. He said to me, "do you know if this was something more serious how bad you would be right now?" He said this will do nothing to you but be very annoying but you are one of the lucky ones, my other patients are not so lucky. He would not do another EMG on me but said if you want meds to help with symptoms come back and see me, no problem. He assured me that BFS can cause many strange things to happen to are bodies, not just twitches. People that twitch constantly, NO BIG DEAL, really.
Being off this board has also helped me, no offense anyone but today really did it for me. I am so done with this crap. I do not care if I vibrate, twitch and spin on my head at the same time(although that would be fun) it is BFS and that is it, does it suck, sure it does but are we going to be crippled and die from it, NO! Oh one more thing...AGAIN we would have weakness if this was ALS and YES are EMG would of picked it up. ALso people concerned about neuropathy, like I was, another big NOTTA!!..A Dr. can tell if you have neuropathy from exam usually, it usually is painful, you and your Dr. would know it...I am sure I have left things out but did want to report back on this, hopefully it helps. Newbies look at my old posts and see my symptoms, I have had alot of them...
I hope all is well with everyone and I will not be on here so much, my man will be home from war in three weeks I need to live again and start my wonderful new life with him....God Bless you..Jenn
I went to see another neuro for reassurance and he did the exam and this time I wrote down every single symptom I have and had and we discussed each one. For those that do not know all about my symptoms, they are internal tremors, internal vibrations, bug crawling sensations 24-7, OF COURSE twitches, shaking in certain positions or holding a limb out. Gold spots in vision that shoot downwards, I know I am forgetting some but anyway he said, ALL BFS! He said BFS does not just give you twitches, it can give you other symptoms. He said he has seen quite a few patients experience the same things and different things then I. I liked this statement because many of us question if this is BFS because of the other symptoms we have. The only thing I did not agree with him on was when he said BFS causes no pain, because Lord knows I have that and it started with BFS. He said to me, "do you know if this was something more serious how bad you would be right now?" He said this will do nothing to you but be very annoying but you are one of the lucky ones, my other patients are not so lucky. He would not do another EMG on me but said if you want meds to help with symptoms come back and see me, no problem. He assured me that BFS can cause many strange things to happen to are bodies, not just twitches. People that twitch constantly, NO BIG DEAL, really.
Being off this board has also helped me, no offense anyone but today really did it for me. I am so done with this crap. I do not care if I vibrate, twitch and spin on my head at the same time(although that would be fun) it is BFS and that is it, does it suck, sure it does but are we going to be crippled and die from it, NO! Oh one more thing...AGAIN we would have weakness if this was ALS and YES are EMG would of picked it up. ALso people concerned about neuropathy, like I was, another big NOTTA!!..A Dr. can tell if you have neuropathy from exam usually, it usually is painful, you and your Dr. would know it...I am sure I have left things out but did want to report back on this, hopefully it helps. Newbies look at my old posts and see my symptoms, I have had alot of them...
I hope all is well with everyone and I will not be on here so much, my man will be home from war in three weeks I need to live again and start my wonderful new life with him....God Bless you..Jenn
