Living with ALS: Long Journey

just posting back in i posted in July crazy how all these things can be going on for soo long.. i have been still hangin on als fourms and i even now went to patients like me to sseee the new develpoping positive research on it... and i was lead into reeading stories talk about getting freaks.. some people had symtoms for YEARS before a diagnosis,, just simple symtoms uhhi drop things ALL the time... i trip all the time i do have balance issues hyperflexia.. startle scare and even my neuro stated thisi have twitchs still and were noted on my EMG i have 3 or 4 true faciliations back in august... nothing else was said but since then i have gotten worst (not twitching persay) i have more stablized twitching now. NOTHING gets better i feel like a washing machine is shaking my house when iam still and vibratios or in my body alllll the time i have my exercise intolernce still where i can life ly leg bend dow etc etc and my legs or amrs just shake and my hands tremour.. now i have a new symtoms that is deff alsish.. iam sooo freakd iam not even going to say what it is.. but my hand or fingers are even crampy now.. and my arm (before i twitching) my arm will wake me up just cramping throbbing.. not all the time tho....sorry for the details or ramnbles just dont know who else to talk to.. and sicnce i have a diagnosis of absolutly nothing.. i coem here to vent... goodness... i dont want als.. soooooo scared.. why why why do i have to have this????... ill probably be one of those diagnosied YEARS later.... i wonder if even going to a clininc of als would help??..everyhting of my test are normal nothing is off...

You know I'm scared of diabetes, my aunt had a heart attack in her sleep from not controlling hers. My dad and my grandmother have theres under controll. But I was told by my doctor that I do not have diabetes, so I do not go to there forums and search out the one person that may have a symptom like me. No use in it because I do not have it. Just like you have been told you do not have al@! Stop going to there forum looking for a reason to scare yourself, it is just out right crazy. For the life of me I can not understand why some of you all go there, our biggest fear, something that scares us so bad we can't live a normal life yet you go and look for more reason's to prove your neauro wrong. It's like a child that is afraid of a monster under his bed, it is not there, but he dang sure does not go looking for it. He hangs out under his cover were he is secure because he is smart enough to know that he does not want to look that monster in the eye.Stop going to there forums, leave those poor people alone and let them get what support they can from each other. Say a prayer for them, then thank God your not in there shoes. I hate BFS with a passion, it makes me misserable beyond words. But dad gum it, it sure beats the alternatives in the world. I had a aunt that died of lung cancer at 39 years old, she had a smile on her face right up until her last week on earth. She enjoyed what she was given and we should all do the same....

i do know you are right. I mean life can be gone at any second ... that iam not worried about.. its the whole suffering, and not knowing how i should plan my future its to the point i start to do things .. drop things .. try n clear my mind of things and bc physially the symtoms are trulley there and things getting wrost.. i mean honestly i said ok.. tremour, tripping, twitchings, hyperflexa, balance issues, and while doing anything like just not went to the sink.. stood there kinda leand in and my calf mucles just shakeing away...what the heck is that????????????... i have never expericence that in my life.. and oh well i popd 2 klompians to calm down never helps but puts me in the mood to sleep. its funny how now muyst my 3 fingers which are now doing funky things (muddle) and cramping.. i guess no lossss of function is good.. i just dont understand this its like soo many symtomes all in a cluster and not one answers... too many symtoms.. and since freakn january.. and my mouth stilll quivers when smiling.. i seem to have more symtoms then people on here then just plane old twitching.. i do stay busy during the day try in keep as activ as i possile can.. but hard when u feel so bad walking and when u cant even lift a leg or do a squat wi shaking i was doing soo much better tho stayed off the sites everything untilllllll i starts crapmping while typing in middle finger and it flopping over... thats not normal... but oh well...thats why iam here to stay off there and express my fears , symtoms, and all... thanks for replyingoh yah and what scares me is how one neuro can just look 5min seem so unconcernd with you and while i hear soo many are quacks and soo many storeis of people having als and clean emgs at first and then they come to find out after being told they dont have it they.. later on do and did.. slower progressing tho... thats what scares, me like the dr isnt doing the job fully.. can happen..

You would not read those stories if you would quit looking for them.You have nothing different than what most on this site complain of, its just BFS. You need to really focus on BFS and thats all. Nobody from this site has ever developed any synister disease, and you are no different. I dont care how many stories you read, or find in your searching. It just aint going to happen, get used to it. All you have is BFS! Stop looking for the monster, there is no such thing....

welllllll i suuuuureeee hope your right and i dont end up being like those other people..i didnt relize that people have the hyperflexa and balance tripping issues like bfs.. and just my one hand or finger when using now hurts like its cramping only when useing... or flops to the side like a pease sign hold it up and it wont stay up that just statrd tho weeks a go.. then the cramping set it... a lot of symdromes just all sounf tooo much a like... uhhh

You will be fine, just hang in there. God don't punish anybody by the way(from your post in another thread) , we all have trials and tribulations, It just makes you stronger in the end. I know I am a better person since getting BFS so there was a silver lining in it all for me....Stay off those other sites now, get a hobby or hang out on an anxiety site where you/we belong.... )

Munecagirl, you really need to stop going to these sites. Not because we want to censor in any way, but because it is not good for you. There are explanations for these things with the EMG's, and these have nothing to do with twitches of BFS, believe me!! There is no point in discussing over and over the fact why you will find people with these stories there, just be sure of this one: IF SOMEONE PRESENTS TO A DOCTOR WITH TWTCHES; AND THE EMG IS CLEAN AND SHOWS ONLY SOME FASCICULATIONS; IT MEANS THAT THIS PERSON HAS NO ALS!!!!!!! People like the ones you mention have a completely different medical story than we do. There's no point to bother anyone on here with medical stuff, but please believe me and the others here that know about EMGs and how they work, that YOU ARE NOT AT ALL SOMEONE WHO SHOWS SIGNS OF ALS THAT WOULD NOT HAVE BEEN CLEARED BY YOUR EMG!!!!! End to that. You know, I had a really brave time the last days and read over most of the stories and studies that made people freak out on here and.......it is just nothing like BFS. There's a clear medical difference between us and people with ALS. And this is the simple reason why noone on this board diagnosed with BFS ever got ALS.

Totally agree with Randy and Chrissi, you don't have the big nasty and you must stop looking at those sites u are scaring yourself to death...believe me I did it to..but no more..dr google just makes u anxious and scared..clean EMG your all good...

My 2 cents. Your going to a foru for an illness. My wife went to a chiari forum when she found out she had it. She returned from reading totally in a panic. WHY? well, you quickly learn that many on those forums are those that are 1 of 3 things. 1 - very rare even within the illness. 2- don't respond to or have trouble with treatment. 3 - Are extreme cases where nothing has helped them and they are stuck. Now you might get quite a few passers through but the ones that dominate the forums are always the worst or rarest cases. This is a fact. I encourage you. Pick any disease and look for a forum on it. read 10-15 posts on that forum and the majority of the off the wall stuff will be from those that nothing seems to help.The people you read about, taking forever to find out and those that evaded testing, are in every illness. Evading testing is a huge factor. If I knew something was wrong for a year but didn't go to the doctor untill ignoring it for 4-6 months then spend 60-90 days jaqcking with my primary, wait 30 days to see a neuro and then go through all the testing and meeting criteria, what do you know, you are over a year. This is why the average time for diagnosis after symptom onset is from 6 months up to a year. It is due to the patient and them trusting their doctors and them not being freaked out about it. Most unlike you are ignorant of what it could be.Those people who say neuros know nothing and testing doesn't show anything are angry and frustrated and can't wait to say I told you so because of how they were treated and we can all understand that but they are the extreme minority. I encourage you to Look, around 1500 people per year get that stuff and most live max about 5 years. I challenge you to find 150 different people with that same extreme story. Use every forum you can. combine them all. I would bet large amounts of money you won't find over 20. Know also that these forums have members world wide so the number of people having it is greater than 1500 per year because of that.Here is what you'll find. Even If you found 120 people with the same story( which you won't) that would still mean that over 99% of all of these patients were found by their neuros within a normal amount of time. It also means that most were within the age peramiters, and statistical data for the disease.People have all kinds of things they tell themselves ( especially hurting people) to make them feel that they know whats going on and that "the earth is flat and safe". It's a defense mechanism. You are doing the same thing. Your unsure and confused so you want to feel safe. The problem, is going to confused people like you to make you feel safe. It can't work.There will be many in a group of dying people who just don't know and are grasping at straws.I hope this gives you perspective.Did you know that 400 people a year get struck by lightning. The odds of you being checked out and slipping by are like the odds of ( if possible) being checked to see if you would ever be hit by lightning being cleared and then being hit 20 times.My 2 cents was long, sorry.

NO I LOVE everyone;s responses rather or not i believe i have als or not (right now i feel i will evetually get that diagnosis..)... everyone's ansers make me feel so awesome.. even after explaing my symtomes glad i came here does make me feel beter.. kinda like i have a chance.... i just feel like iam going to be those rare people who knew they hadit by google and drs and als clinics say noppe they didnt have it... ive talkd to a few.... very scarey... and then this whole hand thing if only that hadnt happend id been able to throw those klompians away at night... i guess its cuz the way i feel every single second of my being for 9monthins now.. and now the hand.. and right hand uhhh..thanks yall yakll are total awesomeness

For some reason it's easier to fear than be hopeful. Those rare people are just that, a rarity in a very rare disease. I honestly believe that most of us are so anxious at this stage of the BFS game that we can't even remember what no anxiety is compared to low anxiety. For me personally, it only takes a little worry or a different symptom to send my anxiety soaring. I had a good friend of mine that is a radiologist tell me that the number of people who have unexplained symptoms is more than the number who are actually ever diagnosed with anything. Thats kinda crazy isn't it.

First of all, I'm sure you are not hearing the entire story. So much more goes into it than what you can extract from some of those forums. And for the most part it is a lot of people fitting together random health related facts into their own conclusion which wouldn't be supported by an actual doctor or science in general. But since they are in the situation they are in and they WANT to believe that ideas are related, then they will tell their story to support this fact even if it isn't true. That is the way it is and I'm sure a majority of people would do the same thing under really hard circumstances like that. As was said above it is "grasping at straws". Since it is so unknown or un predictable they want to find something in their history that will support their current situation. It would give me a much more feeling of control/explanation in a unfortunate scenerio.And, until you understand that and also get off those forums, you might never move on.Secondly, I'm only 6 months into this but your symptoms aren't unique to you. So, my question to you is, Are you telling many people on these forums who have suffered the same thing that they will eventually be diagnosed with ALS? Because if this is the statement you are willing to support (and this is what you are presenting based on what you have been saying/convince of), then what makes you more qualified than their neuro to make this medical diagnosis. Because it better be medical school and a specialty in neurology.

@ Trajon, applause, applause, well said ) @ Wanderer, its been more then that time...like 20 times over on the other site....And also what was that game you sent me a link too, looks scary Should I be scared??

@mommy its the most popular scary game on the net now. Its like you have to click on the rooms to find out how you proceed to the next room. Play it during helloween with your friends with the volume up you will love it.

Why do I not believe you...something is going to jump out at me isnt it You are trying to take me out arent you Wanderer??

well its just werid i have a number of unexplaind group oh things happening.. i never diagnosed myself or gotten a diagnosis of bfs.i seen it on an als site.. neuros have no clues yet whats going on.... soo i came here. bc main symtom on here is twitching.. and i do twitch...and umm moomy like 20x... thats a little bit of a lie... i have askd some questions ONLY.. yet bc my spelling error and my personality made a person mad then.. it was alllll down hill from there... so whatever on that one .. its kinda like schooll... you see a girl who dont like a girl or boy... and it travels so on so on.. then u have people be hostile for you and they dont even know u and say lies about youmy questions on THAT afourm have nothing to do with this forum.. actually and i never googled twitching or my symtoms and come up w als.. was a neuro and the clear clean testing of everything but yet symtoms... iam here just like everyone else iam just SCARED!!!!!!!!.... but maybe everyone else with bfs has my same symtoms... hate this hand cramping oh well and the virbating and shaking and balance and tripping HATE IT HATE IT HATE IT... hate how i always drop things and then they break or spill or my keys drop while i have a bag of htings and slide under my car... or being laughd at shoot recetly i fell flat on my face in the mall and an outside panera bread company haha.. soo ambarrsing.. sooo excuse me for being super scared of having the same symtoms of deadley dieases and one als which is a *beep* to diagnosis.. time will tell me.. tho... thnaks for all the replys.

You do not have , stop saying that you will be DX'd with it. All you have is BFS, there is no need to worry about anything else. I hate to see somebody as scared as I was, and beleive me I was as scared as you and I have never been to those other sites. As soon as your anxiety comes down some the symptoms will get better. It just takes time.Please continue to post on here and share your symptoms, just leave the stories you have read out. Everybody has heard about them and there just not accurate. Calm down and hang in there.God Bless

OMG, you actually heard something I said. I am shocked....I am not giving you a hard time because u ticked off so many on the ALS forum....but you were giving people who are truly ill with a deadly disease a really hard time over there, but trust me, some people here are pretty stressed but they try really hard to help others and its gets hard when people just refuse to listen....Its ok to be scared, most of us on here are on some level or another, but we are all trying to live and carry on, and we try to help others do the same....And many on here know what they are talking about and I have been listening to you talk about how you are falling on your face, and dropping everything for over 4 months now, but hmmmm, you still dont have a doctor justifying or confirming this weakness and miraculously you arent walking with a cane or in a wheelchair...so yeah, I really think you should take some of the sound advice you have been given many of times over again and try attacking the problem you do have that is so obvious...ANXIETY big time...we all had to face that demon and fight it...you are no different....And you DO have BFS.....

welll i do have anxiety over this yes.. but in the begging when it all startd i was a perfectly normal 26 yr old women happy.. i never knew even what MS was when i got told what testing was for let along ALS OR MND!!!.. never even knew something even existed.. and i did post only on the do i have? part thats what its for.. i do know of atleast two memeber on there who stated on the post recetnly and 2 who personally inboxed me and told me they dealt w the same responce that once diagnosed they even changedd there names .. funny thing is they are some of the meaner ones.. odd.. i guess sometimes people forget... i mean i do know i have UMN signs .. neuro and drs told me but thats it... so i did i was ok just a few weeks ago i was claming down klopmians once in a while.. learning just to live with the "new me" how i felt droppies, balncne and of course hubbie.. haha reminding me to beee careful... then... one night i was doing something hand tremour and i held out my hand.. and well u read my post i was like ok ok oik... then,.. now ther cramping came in.. soo weird. its not JUST IN MY HEAD. we know pain.. we not hurt.. but ne ways yah.. soo. maybe all i have is BFS... its sure put a stop or hectic on my life.. and i guess iam just not in the frame of mind ijust cant get it out of my head i DONT HAVE IT...ive dooone soo much research.. read soo many stories.. even if i never go back and read another one(and i wont) its still there in my head.. it does eat at you and just think its real.. GOD HELP THEM... that just is cruel to meee... sooo cruel.. but hey who am i"???.. no one special.. and i CANT HARDLY WAIT for the day i come to realazation i dont have it.. or nothing new happns my body tho feeling like this for 10months now.. its not going to get better whatever symdrome i have.. instead i just have to live w it no choice nowi just hate when doing things and i get lil reminders.. anything i do... shoot i even go to stand up or just now cleaning and walking a bit and there i go.. sway over like a drunk and trip... i never thought about it before.. oh wellthanks everyone you all truly are super speical and help me.. even tho u think iam a werido lol

A think a majority of us can relate to many of your symptoms. I know that I can (including the hand cramping to name one of them). And most of us can relate to being scared. Some of my symptoms don't wane much if at all either but it takes everyone a different amount of time to wane. Some it took years and some after years haven't felt much change. BUT we are all very fortunate for not having anything worse. And this includes you. Don't think that you are unique in what you are experiencing. It's hard not too because this is a demon that I too fight off but if you search for you symptoms....someone else on here has had them before...maybe to a slightly different degree but once again everyone is different in how their body responds. You really just need to concentrate on items that point away from NMD and to BFS. And only think about those. It's not easy but we all are supporting you and know you can make the shift with time.