here is a good thread for the twitchers

[scared of als]

I have had Fasiculations for 10 years now. Started when I was 26.

I has other symptoms too, a degree of weakness among them. I sought out help and a number of doctors (3 neurologists incld) and all they could tell me was I had an anxiety problem. Well, no kidding!!. Everything I've read says this points to ALS. The worst disease (in my mind) known to man. I was never able to even get a doctor to acknowledge I was having Fasics. Since I knew for a fact they were wrong on this point, I felt they could be wrong on the Non Als diagnosis. I went through 2 1/2 years of hell. Everybody thought I was Crazy. My Family Doctor even wanted me to see a Pyschiatrist. I was convinced I had ALS and nobody could tell me different. I felt it was just a matter of time and the weakness would hit heavy and the EMG would start picking it up. I ended up losing everthing in my life. My Wife, Job, House, everthing. After 3 years passed and the weakness had not progressed I felt it was some strange variant of an MND, and it wasn't happening fast. I went back to work and rebuilt my life. Today I still am a little weak and the Fasics are as strong as ever. But all my concern over ALS is long gone. I have only recently come across the Term "Benign Fasiculation syndrome". It really pisses me off because if even one of those doctors had given me any credibilty and even mentioned BFS, I could have avoided so much loss. Anyway sorry for the long story, but I wanted to tell anyone who may have concerns about Fasiculations and even some weakness, that ALS isn't a forgone conclusion.

[Icanmanz]

Hi scared! How are you this morning? Not too good according to your post, and I pray to God you find help. Oh, first of all, I must let you know that I did not read your post all the way, so if I am missing something I am sorry. I got a question. Did you not say the other day you just lost a baby after 12 days of delivery? Aren't you supposed to be pregnant again, and concerned that you might have als? God forgive me if I am wrong, but I do not feel like scrolling back to those older posts. Aren't you the one, or am I confusing you with someone else? Let's say if you happen to be the same person. or poster, rather, how could you be pregnant, and you just stated that you lost your job, wife, etc? How could you have lost a wife? Am I losing my marbles or what, or do I need better brand coffee??? God bless you!

Irma

[scared of als]

first of all this is something i found in the bfs site. and copy then pated to here this is a good thing. Second of all i lost lilyrose march 7th and got pregnant 2 months later. Thanks have a great day

[Icanmanz]

Okay, I see what you mean! Sorry for the misunderstanding. Maybe I should have read it more thoroughly, and I apologize. Yeah, I remember when I read about you losing your baby, and my heart goes out to you. I pray to God that He helps you carry this other baby, give birth to your baby, and enjoy your new baby! That is such a precious moment. I need to ask you, have you been to a neuro yet? Do you have any other children? May God bless you, oh yeah, and I pray to God you do not have ALS!

Irma

[scared of als]

i hope i spelled that right. look at your pms i pmd you

[Al]

Hi scared. You can't just copy and paste other posts from other forums. First of all it confuses the readers here. Second I don't want to get in trouble with the other forums or sites. I believe what you are doing borders on plagarism. Thirdly you have fasciculations and nothing else even remotely like ALS. Quit obsessing about it. If you were so concerned about ALS why would you get pregnant? You are PM ing people and phoning them at home and this has never been done so much by one person. Have you got any help yet?
Sorry for being blunt but when you start raiding other sites to try to prove 3 docs are wrong and you are right then I have to say something.
AL.

[scared of als]

i dont do these visious things al, youve said that to me in the past im phoning people at home what are you talking about the only person i have talked to was annmarie. So please dont make me look bad and yes al i wasnt planning on getting pregnant kind of just happened, i didnt no it was bad to do that. Ok all i was trying to help people that have been obsessing besides me. its a very scary thing for me and ill deal with it as it comes. iam not trying to prove them wrong al. you no what i dont want to even talk about his right now iam to upset, i guess your right and iam wrong ive been more thn nice to you and you always come at me like. sorry jenny

[Al]

First off I am not mean. but I do get cranky when people abuse my good nature. I have had complaints about you Private Messaging people. You have sent PM's to at least 30 different people asking for their symptoms and in some cases where they live and how they can be contacted. This information is in the search feature in old postings (symptoms, progression). Numerous people have told you here you DO NOT HAVE ALS. Do you listen ? No. You continue to obsess about it. Not healthy. How many hours a day are you spending here and on other sites? Just the time I see you on here counts as being more than normal.
AL.

[scared of als]

I admit i spend a lot of time on here, and that is a problem but i dont want to argue with you all, i guess ill have to wait and see.

[lhagsjr]

Thank You so much for addressing this issue. Most people when they first come on for the first few days post scary threads(me included) and IM maybe a person or 2 but this girl is out of control. She is taking over this forum with her constant new threads. Im glad a moderator stepped in...

[CindyM]

Thanks for the validation, Lou. I usually try re-directing the terribly anxious by changing the tone of the conversation but that oviously will not work in every case. Sometimes limits need to be set, but not all of our long-term members are comfortable with that.

Just another idea, everybody. It might help if we all remember that we don't need to respond to every post. (Did I just say that? :-D) If anyone is trying your patience with needy behavior you can always put them on your ignore list.

Al and I must read every post, so if you put somebody on your ignore list, Al and I will still pay attention to them. While we try not to feed the needs of someone who is basically well and merely lonely, sad and frightened, we are both inclined to err on the side of caution.

One final thought: some of our regular members will be more comfortable repeating as often as necessary, “You are fine. You are just anxious,” and various forms of that message.
Hope you all enjoy your evening! Cindy

[ltr]

Al - right after you posted the above posts to Jenny, she PM'd me and blamed me for reporting her to you. I have not reported her, or anyone ever, I have just deleted her PM's as they come in. I have never done this before and have always believed in reaching out to others who are scared and sick, but I have done all I can for her and it has fallen on deaf ears (or in this case blind eyes). I am sorry Jenny, I know you are scared, but even if you do have a legitimate illness, you still need some type of counseling. We have all had to face that with our illnesses. I'm sure instead of soaking this in you'll come back with why you have als and why we are being mean, but try your best not to.

[scared of als]

i have the message i sent you leslie. Leslie iam terribly sorry for bugging you i new something was wrong cause ive been pming you and no response. i never said LESLIE YOU TOLD AL I WAS BUGGING YOU> IAM NOT A MEAN PERSON ANNMARIE CAN VOUCH FOR ME. i understand you have helped me and made me feel so much better iam going to leave for a while and i will continue to check in and give you all my docs update and iam not going to come back and say you guys are mean i have als if i have als i probabbly wont be on this site thanks jenny

[ltr]

Well, I must have misread it when you said that Al had asked you to stop PMing others and you knew something was wrong when I wasn't answering. I don't want you upset and really wish you the best, but I have to say, Jenny, that I am really upset for what you are doing to your unborn child. In my opinion it is selfish of you to put such hardship on your poor baby. Many of us have voiced our concern for your pregnancy and asked you to get some help. It seems like you are hysterical and won't take ANY of our advice! Like Lou said, most scared, sick people calm down after corresponding with the forum and seeing a couple of docs, but you aren't doing any of that. I know I only hope the best for you and your family, but you are the only one that can't take the steps for a good future.

[scared of als]

Thanks leslie for embarissing me in front of everyone on this forum and making me look like iam a bad mom. I am the best mom leslie i brought my baby home when she was 5 days old and fed her with a feeding tube i didnt get to do all the regular things mom can do and that is why iam scared this pregnancy ok you think i want to live like this no id love to be on some kind of anti anxiety med like you but i cant cause iam pregnant. Its only been 6 months since she has passed so if iam being a little selfish iam sorry and iam taking into consideration, believe me you dont want to no what its like to loose a child. listedn dont want to talk about that i talk about that with a psyciatrist. i came on here freaked out about my twitching and yes i just stated in my last thread that iam going to not be on here so much. i reconize there is a problem you stated yourself to me its not normal for a person to twitch for 5 months. So please leslie dont call me selfish you havent been down my road thank you for making me look like a incopitent mom.

[ltr]

Man....can't win with you. Please, no more correspondence.

[ltr]

Cindy - could you post where the "ignore" button is and how to block a user from PM's. I have never had to do this and didn't think I ever would.

[scared of als]

that is fine, there is a button when you go into your profile and you click on my name and press ignore my username. It will either say ignore or add. but dont worry i wont pm you

[Jamiet]

Whoa Whoa Whoa,

Jenny, listen, you have 3 different people here, from all sides of the spectrum telling you how, we have all been thru the same stage you are. We're not saying nothing is wrong, nor has anyone called you incompetent, a bad mom, etc etc etc.

I don't know what it's like to loose a child, but i was "almost" there, my boy was on his death bed for several weeks, died on the table twice with me sitting right there. This is the reason i've been so nice to you, answered all your PM's, about 10 a day to be exact.

What were telling you, is that everything we tell you seems to fall on deaf ears.

Listen, you've twitced for 5 months, you have hypothyroid disorder, lost a child and you don't have hyperactive reflexes. Listen, in a study of ALS patients, within 3 months of twitching, you will have at least one of the following: 1) Weakness that doesn't get better and the dr would notice, 2) Visable atrophy somewhere and 3) Every ALS patient here has very very hyperactive reflexes, every single one. It's a diagnostic criteria.

You have none of the above. You have BFS ok.

We don't know what else to do for you, but, you are looking from sympathy from very sick people, much more sick than you are. You have to either slow down, get help from somewhere or you will go nuts.

Regarding anxiety meds, you CAN get on something while you are pregnant, i'm not a doctor, but there is xanax, you can definitely take tranxene - extended release. My sister was pregnat on tranxene - ext. release while pregnant.

The tranxene is what calmed me down, so go get you some ok! It is the 11.25 tranxene ext. release.

My sister took it, i know you can get it.

sorry to be so blunt, you don't have ALS and you wont' develop it, we are sure of it. We can see right thru the people here who don't have it. These people live this every day, they know the disease inside and out, give them credit and a little respect and get some help

rgds,

jamie

[scared of als]

Jamie your so sweet, your not being blunt i totally understnd unfortunatley i went to endo mon and my thyroid is in check with my synthroid so she said the faasics arent do to that i wish!!! you no what it is ive read so many peoples post on here some that just twitched for a year and then later developed als, but jamie you and annmarie made me feel so much better, leslie made me feel good to, i dont no what happened, i probablly did annoy her to much, but you guys would seriously love me if you saw me in person iam not s crazy as i sound. shut up dave my hubby just saays yes she is lol..... xanax oh hunny if i could take that id be in la la land and never on this forum it causes cleft lips and hart malformtions they wont give it to me. i have to be careful because of what happened to lilyrose and i think the docs are taking extra concern im very high risk especially with another c section. Iam very gld everything worked out with your boy...oh man that had to come close and scary. I actully had my dad come on here and he got scared for me because he saw all the misdiag....but like my dad and others on here they want me to caalm down im calling mu ob right away tomorrow and demanding something,,i miss xanax thanks jamie

[Midnight]

I am also not diagnosed and fairly new, so i hope i am not overstepping my bounds.

Jenny, I was on Zoloft my entire pregnancy. I do think that you seriously should consider getting an appointment with a phyciatrist because it really is not healthy for your baby. I tried to mention this before, but you really should force yourself to redirect to focus on your baby. This message does not need a response, but I do hope you consider talking to a professional soon and tell him or her that about this issue. Good luck to you.