Accepting BFS Diagnosis Questions

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CollsMaroon

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Hi All,After six months of extreme ALS fear but several normal neurological exams and four normal EMGs, I think I have to accept that what I have is, at least in part, BFS.So, my questions. Actually, I have three, not two.#1 - Babinski Sign (anyone who has been for a neuro exam will know what this is)...my toes just didn't really do much of anything. Is that strange? Didn't go up, didn't go down. Anyone else have this result?#2 - I've noticed that when I hold my fingers in certain positions they tremor a little. Has anyone else experienced this? Normal? Should I be worried?And finally, #3 - Has anyone else had trouble actually believing that they may NOT have ALS, but instead something much less sinister, like BFS? I'm finding that I'm really have a hard time accepting it, which is so odd since by all accounts, I would say I should be thrilled. It's as though I'm afraid that as soon as I do accept it, I'll jinx myself and really come out having the bad thing...Any and all opinions appreciated!
 
Colls,My feet don't react to the Babinski test either. They just sit there and have an absent reaction. My doctors have called it 'normal' so if it doesn't concern them, it certainly doesn't concern me. Believe it or not, the finger tremors ARE actually due to anxiety. I used to get frustrated when everyone was trying to tell me that ALL my symptoms are due to anxiety, but I can tell you that this one really is. I showed my neuro my hands and my fingers were moving back and forth and he said that is a sign of high anxiety and it was not concerning. Sure enough, as my anxiety has come down, my fingers have stopped tremoring. Regarding your last question, it is VERY common. If you read about BFS on widipedia, it mentions that BFSers have a hard time accepting that what we have is benign. These symptoms we have are very real and not 'normal'. Sure its normal for everybody to twitch, but not to our levels. I am 10 months into this madness and still twitching every second of the day. I'm not sure it will ever stop. It took me a while to shake the ALS fears but I've heard neurologists from a couple of the top medical facilities in the world (Mass General and Mayo) tell me that its benign so that's what ultimately has helped me to forget about ALS. -Matt
 
About the babinski sign, I just remember it wasn't positive (I don't think my toes were moving either, but I'm not sure).I don't think ''it's normal'' to shake, but my arms/hands do shake sometimes, especially when I hold them in certain positions. This morning I was holding a heavy bowl full of water and my left fingers (the ones holding it) were shaking. I can clearly feel it and see it. I also have internal tremors (either upper/lower body). I must admit it scares me a little bit since it can be a sign of MND... :confused: I know what you mean... Since all these symptoms are just not normal, it's hard to accept they are truly benign.
 
Thanks so much for the reply, Matt. It amazes me how many symptoms are actually just anxiety, and is so hard to believe sometimes. The last neurologist I saw, this past week, told me that he finds that patients have a very difficult time accepting a "normal" diagnosis. I think we get so wrapped up in something we have so figured out, not much of anything can convince us otherwise.
 
Answers to your question:#1: Sometimes. My reflexes are sluggish or absent, depending on the day and the clinician.#2: No tremor in my fingers.#3: No, I never thought I had ALS. I assumed my symptoms, which started in Dec. 2000, would just go away if I ignored them and got on with my life. After that didn't work for a couple of years, I saw some doctors, who argued about what might be going on, and they're still trying to figure it out. I am not officially diagnosed with BFS, and even after I asked my current primary care doc about BFS as a diagnosis, he told me there was probably more going on. So at times I'm trying to convince him not to worry about things they find, or just to watch and wait rather than try, for instance, thyroid replacement, which caused a lot of problems and solved none.Separately, many physicians and psychologists spend their time convincing patients they don't have one of the three-letter nasties. I've heard them complain, amongst themselves, about how they just wish their patients would accept their diagnosis. This all seems odd to me, since I am still trying to get a diagnosis, and would be pleased to have a diagnosis to complain or argue about, reject, or refute. But my perspective is probably different, given my history.
 
Thanks Aoi.Yes, I certainly agree that your situation is different - no diagnosis and YOU telling your doctors to hold out and not to be concerned! I am the complete opposite. I sometimes wonder what it would actually take for me to be convinced away from ALS...the scenario I've come up with in my mind is being evaluated by a team of top MND specialists from across the country. I think that would do it :) Realistic, right?
 
1: Good for you. If your fett do not do anything, you are fine . If you have a small baby near you, stroke his feet like your neuro did and see what happens: this is babinsky. It is an "old" reflex we loose at some point in our development, and people with MND fall "back" on it.2: any querstions??? : when I showed this vid, amazingly there were others that were glad to see it, because their dingers do the same. 3: most people on here, yes. Even that fear about accepting it and then jinx yourself and have it is very very very common on the board.
 
Another thing I find really, really freaks me out (but I believe many people suffer from) is the "internal tremor", or feeling of shaking that isn't really visible to anyone, but that you yourself can feel. First time it happened I thought the subway was travelling under my building!
 
Totally BFS. Is is not really visibe but somtimes another person can feel it he/she lays her hand on the vibrating body part. Sometimes the vibration is all over the body. It can develop into a really heavy shaking tremor with some lack of sleep, high caffeine input , stress or just your BFS bugging you and trying to make you freak out, coming and going. These issues are not at all part of any MND, only of BFS
 

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