Stuck in an Endless Loop

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Can someone who has talked to their NEUROS PLEASEEEEEEEEEEEEEEE SET THIS STRAIGHT ABOUT BULBAR! I COME HERE FOR SUPPORT and people keep dragging these stories from ALS FORUMS and bringing them BACK! Its ruining my life and Im allowing it to ruin my life because I keep coming back to this site for reassurance and to reassure people and I keep finding posts like THIS! SOMEONE PLEASE SET THIS STRAIGHT.I've read on Medhelp and been told its either LIMB ONSET OR BULBAR - ITS NOT BOTH.You dont have WIDESPREAD TWITCHING WITH BULBAR until the disease is HIGHLY PROGRESSED and by then there would be NO MISTAKING.I am at my wits end just when I was having a good recovery. How do I keep myself from coming to this site and falling back into a hole and losing it like I do. I have NEVER watched something destroy my life such as this benign disease.Lovely
 
Maarten-I am not responding because of what Dee Dee said. I am replying to this because I want to know more about what the reason is for you to think you have bulbar onset? I have had ALL the issues you have had. Check my past posts. Tongue fascics, problems swallowing etc... Why would you say you have "bulbar onset" if you have seen a neuro? I would assume you have already. Both of my neuros told me that if you have bulbar onset you will have clinical and EMG changes in other limbs that are PROFOUND! It is the MOST devistating form of ALS and ALL testing is done for ALS (this would be limb onset and bulbar onset). I was on the kick and freaking out for months because of my tongue twitching and not being able to swallow. People really need to listen to this...and read what Alonzo posted recently in the past week. YOU DONT GO TO THE NEURO AND HAVE EMGS AND THEY MISSED SOMETHING! ALS IS ALS. TO DIAGNOSE ALS THEY MUST HAVE 3 LIMBS WITH EMG CHANGES OR 2 LIMBS AND BULBAR INVOLVEMENT (IE LOSS OF SPEECH/ATROPHY OF TONGUE). THE REASON FOR A YEAR TO DIAGNOSIS IS IT CAN TAKE THAT LONG TO HAVE POSITIVE SIGNS IN ALL THE AREAS AND THEY HAVE TO RULE EVERYTHING ELSE OUT FIRST!!!!!!!!!!!! IF YOU GO IN AND HAVE AN EMG AND ITS CLEAR OR EVEN HAS FASCICS YOU ARE CLEAR! THE PROCESS OF THE MUSCLE DYING WOULD BE ALS AND THE EMG WOULD DEFINATELY PICK IT UP!!!!!!!!!!!!!!!!!Bringing up the "year to diagnosis" scares the daylights out of new people on this site and you should ALWAYS think before you post something of this nature. People that have never been to a neuro dont understand that there is a difference between DIAGNOSIS of ALS and having a clean EMG and being told its BFS and it WILL NOT PROGRESS TO ALS!!!!!!!!!!!! So please be considerate of other members that are new and even the ones that are going through a rough time. If you have issues with thinking you have ALS its ok to ask quesitons but just putting out info does not help ANYONE. I hope you find answers to your questions and get a neuro that can explain all of this to you.
 
Can I ask something (sorry if I already did), but I have these weird bulbar things too, like tickling cheecks and tongueBut if you had an EMG performed in arms, hands and legs would it also show the bulbar things in it? Just a question.Bart
 
GuysBulbar is the most progressive and relentless type of ALS. If you had it, you would know!!! Tongue fasics etc would be very late symptoms and by then you would have been like a beacon to a neuro....How long have you guys had these tongue fasics? The prognosis for bulbar is very short so trust us when we say YOU DO NOT HAVE IT, otherwise your neuro would have told you already!!!Now you have made me spill my tea and I am not happy cos it has gone in my keyboard...;-(((
 
I don't want to upset anyone here but we have to look at the facts. I had a clean EMG performed in leg, arm, hand. But lately I got this strange mouth / tongue things: like tickling, vibrating tongue and mouth also my face vibrates. I'm also having the feeling that my jaw sometimes cramps.But when you are saying that bulbar symptoms are immediately very obvious than that's not true, most people have little speeking problems at first or funny tongue, things other people don't even notice. I can go with the idea that from one day to the other you can't swallow or speak anymore. Because when the dx is been made after a year it's simply to see the evolution. My concern is : i've been to a neuro for my twitches in legs, arms,.. but didn't say something from my tonque because I hadn't have problems than. So do they search for both types als in a clinical oor when you go for leg twitches only for the lower?Again I don't want to upset anybody and this is a reassurence forum, BUT, we may not hide information or tell things that are not true, it could be that here are people with ***, they have to know when to go to a neuro.
 
Maarten you are going completely to wrong direction. The tongue twitching is nothing if you have fasciculations in other parts of body. The specialist (EMG) didn't test your tongue IF you do not have any signs of ALS in your limbs (according to friend of mine who is EMG specialist at one hospital here going in Zagreb, Croatia). Personally I have had the tongue issues over the year. Not only that believe me. I have had twitches EVERYWHERE including my rectum area (not very pleasant but true). Today, after more than four years, all is settle down except "popcorn" effect in my legs.
 
@ slavin BalenI'm also on the bulbar track. The past 3 weeks my cheecks began vibrating, twitching and also my tongue tickles/vibrates? almost constantly, should I worry about that? I had 4 clean EMG's (ex fascics)in the first 6 weeks of twitching; So you think if you twitch in other areas first it can't be bulbar ***? sorry, still worried...(als I'm sneezing a lot, don't know if it has anything to do with this)Bart
 
Hey you guys, lets don't go too far in splitting hairs here. Regarding bulbar symptoms: if you doctor or neuro did a clinical exam and had you stick your tongue out, say ah (he was looking for symmetry--if your uvula was hanging straight, etc.), blow your cheeks out like a balloon, poke your cheeks with your tongue, and maybe even some other things, then he was checking for bulbar. Tongue tickling, tingling, twitching, feeling weird, feeling heavy, feeling thick, trouble making certain letter sounds, even slurred speech do not necessarily mean ALS, (check out anxietycentre and you will find every one of these symptoms can be associated with anxiety and if you are stressing to this point you have some anxiety) Trust me, they looked, you did not have to mention it.Also, regarding the length of time it takes to diagnose ALS: yes, it very often does take a year or two to CONFIRM the diagnosis. But, your doctors can confirm that you do NOT have ALS right away. This was one of the most liberating pieces of information I received.If your clinical exam turns up NOTHING (as in NO THING, not even one little test failed or not quite right or suspicious) then you can rest assured you're okay. If you go on to insist an EMG for peace of mind and it comes up clean, then you can rest. If you have numberous EMGs and they come up clean every time then, please, you can rest. Physical symptoms may well continue, may get worse, or may go away for a while. They are annoying, they can be scarey (especially when we get a new variety), and we all hate them, but don't go on a witch hunt, don't dissect, don't try to find every obscure situation and see if you match it. Trust your doctor, do NOT trust every story you read on the web. Lastly, the best really true, convincing proof that you are okay is time. In my unhealthy ventures into cyberspace, one thread kept coming up consistently was that ALS is progressive----it doesn't stall, it moves right along, you experience steady, concrete loss of function. I have not read an account of a single one of you here, all the way back from 2002 who have experienced a consistent loss of function. We will still have bad days--I had one yesterday---I posted----received encouragement and was better (emotionally) in the afternoon. Let us continue to keep this forum a place of hope and encouragement. (even if you're twitching the entire way :confused: )BlessingsCindy
 
I just had to go get my RX filled for my klonapin because I have been having a HORRIBLE time. I come to this site for support and reassurance and to give back the same. Then you come across POSTS such as the ones up above and what does that do for you??I am getting to where I am getting MORE anxiety coming to this forum then I was before I was cleared by a EMG and a good neurologist. Its a addictive place and you come here for peace of mind and when your feeling good to help others but...lately..I dont know that I can sincerely say that everyone on this site is posting for BEST INTREST and NOT just to stir up MESS! Not pointing fingers @ ANYONE specifically but.....I am just noticing a trend here.Though I WANT to doubt my neurologist and think she may have missed Bulbar ONSET I have to think....she's been to WAY WAY WAY more schooling then me. SEEN the DISEASE FIRST HAND (I asked, NUMEROUS TIMES she told me stories). I sure wasnt biting my tongue or slurring my words when she did my EMG and I had presented with onset twitches. My mind has read to much and my anxiety has kicked in full force.When I was getting my RX filled at the Pharmacist I almost passed out. I became VERY HOT, Very Light headed, and dizzy. It was scary- but I told myself *thats your anxiety, let it go*...Soon as I got busy in the check out line and talking I was fine. Didnt slur a word, didnt bite my tongue, NOTHING. We need to keep this site POSITIVE. We dont need to come here to discredit ANYONE or their NEUROLOGISTS unless the post is ABSOLUTELY ABSURD and DISCREDITIBLE! Lovely
 
Let’s work this out together. Bfs affects EVERY muscle at any time right? Als starts in one limb mainly distal ones like ONE hand or ONE foot. Distal means farther from the source(CNS). A limb starts to die sends a distress signal (twitching) This distress signal is constant and rhythmic, like "SOS" over and over again. Then as the disease spreads the SAME pattern continues with every muscle it affects. With als twitching starts to slow down in the first affected limb as the muscle weakens. The muscle 's distress signal is losing juice. That is why most if not all als patients do not even feel the twitching. That part of the body is DYING and losing strength fast.Now back to bfs. Does anyone wonder why our twitching gets WORSE with lack of sleep, anxiety, illness.............Because are adrenaline kicks in and/or our immunine system kicks in. In als those things can't trigger STRONGER twitching because the power supply just is not there. Period. In bfs the muscles we use the most twitch the most. Feet, calves, hands, jaw, tongue, legs, arms. Try to go a day w/o using your tongue or jaw. Impossible. plus throw in night clenching which EVERYONE who has high anxiety does every night. This makes total sense because we have the supply to continue twitching. We fatigue because not only is our muscles going 24/7 somewhere on our body we are not giving them a break with suitable rest.Also it is no coincidence that we fixate on a certain area and, what do you know a flare up. Als does not work like that but bfs does. Bfs, anxiety is a vicious cycle that feeds off of one another. (the more you twitch the more worked up you are, the more worked up you are......) Some find exercise helps , which again makes more sense with bfs because not only are you releasing endorphins’(sp) and good fibes thru out your body your giving those amped up, powered up muscles something constructive to do. Our muscles were created to lift, pull, run, tug..............not twitch. Think of it like this, our muscles are screwed up and misfiring and doing the wrong function. The poor things don't know if they are coming or going.As for posts that scare us. It took me awhile but I eventually quit looking at posts that said "Don't read if sensitive" or "what the #@#%$" or "I am confused". Those are bright neon flashing warning signs for newbie’s and easily freaked people to STAY AWAY. Just don't click on it. I did that it and helped me tremendouslyDD
 
GOOD POST DD, I guess you just want to SEE the DEFENSE come to the rescue when you see posts that say "DONT READ ETC" . Know what I mean? I should have KNOWNNNNNNNNNNNNNNN better NOT to click on this post BUT....what killed the cat? LOL Curiosity? I am a christian and I have GOT to start behaving like one and believe my heavenly father and my benign diagnosis- I asked him several times "If I go to this doctor and she tells me I am fine", then I will believe it. So I go and get that..and I dont believe it. (shows no faith). Then I say " Ok Lord, If I have this EMG and it is clean...I will believe I am fine"..So what happens? I have the CLEAN EMG...told NO WAY NO ALS what do I do? Yep...Ok "God, If you'll just please let this weak feeling in my arm go away...I promise I wont question you again"...It goes away..Where am I at today? "God, Please...let me feel like I am not slurring my words or biting my tongue"...Here I Am! I cant keep asking God for all these "proofs" so to speak if I cant deal with a benign answer and a rewarding life sentence . See what I am saying- Anxiety is like that. I gaurantee you if I went outside and broke my leg..I'd forget about my tongue and the weird feelings and percieved slurred words I may fumble over or the occasional tongue bite. Faith is Faith. I've demonstrated NONE . Its time for me to practice what I preach I think.I ask people of I am slurring and they are like Ummmm no????!!!!! No one looks at me funny when I talk- no one says "do what?" no one says " i didnt understand that"...its clear as a whistle to them, Especially when I am belly aching at my hubby.Haha!!Lovely
 
Dee,Alonzo covered this the other day. This is just a re-worded form of the other posts reagarding bulbar. The bottom line to all of this is THIS SITE IS USED TO HELP YOU LEARN ABOUT BFS, HENCE THE TITLE. It's not ment to be therapy or cure you from anxiety. It was created to give us more information and a place to chat with others in a positive light about BFS!!!!!!!!!! NOT ALS!!!!!!!!!. Once we find out we need to see a neuro then we should all learn to trust them unless they tell us otherwise. NONE OF US ARE NEUROLOGISTS. I ONLY provide direct answers to questions I asked to the doctors to help others on this site. You can go back and fourth all day about what ALS does to do versus BFS. But at the end of the day our doctors have told us we have BFS. PERIOD!!!!!!!!!!!!!!!!!!!!!! If you didn't have a doctor explain to you what the symptoms of BFS can be maybe you should consider making another appointment or if you are at a total loss seeing another neuro ONLY to have your questions answered. Once they say "its not ALS and it wont progress into ALS" they cant do anymore for you! At that point its stricktly anxiety and a good neuro can try various treatments to help you. But in the end you have to come to the reality that YOU HAVE BFS. I just got done weed whacking my yard. Guess what? My hands were tremoring so bad I could not dial my cell phone and my hands had visible twitches and also my shoulders at the top. Do I think I have ALS...NO WAY! My neuros told me that BFS has a multitude of symptoms that can last a lifetime or a few months but it WILL NOT PROGRESS TO ALS. They explained WHY and HOW it is TOTALLY NOT RELATED. I have not had any booty hole twitches but darn it I have them ALL over. And you know my anxiety was based on my left foot ONLY twitching for about 6 months and it says in the "bfs in a nutshell" that ALS typically starts in a hand or a foot. So I had a reason to wig out (as do others). The only source to talk about benign stuff was telling me my only symptom at the time WAS how ALS starts...with twitching in one foot etc... But one day I said "You know what these doctors did the EMGS/NCVS and all the clinicals....there was NOTHING. Sure I feel like my body is 1/2 of what it used to be. Sometimes my legs dont feel like they work right and my right arm will feel like it has NO strength. But its been like this ever since this started and its not ALS. You have to start telling yourself "I saw a neuro, I had the tests, they said its not ALS, ITS NOT ALS"With Total Respect-Sean B.
 

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