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Information about how to manage or reduce the severity of BFS symptoms

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New on this site!

Postby Mimmi on April 8th, 2003, 4:57 am

Hi dear friends all over the world!

I am a 32 year old woman and I live in Sweden. I am so happy to have found this webbsite, since my life is a terrible mess, with a lot of strange symptoms, twitches and so on.

I just registred so I will test if it all works as it should. Before I tell you my story.... I hope to get in contact with others that is in the same situation as I am. I am getting crazy and I fear ALS a lot!! Well, I will tell you more if I see that my "log-in" has worked. Please, someone - just send me a short answer on this message so that I can go on using this site!

Take care!

Mimmi
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WELCOME

Postby reneeintx on April 8th, 2003, 7:23 am

MIMMI,

I'm reading you loud and clear here :)

I'm anxious to hear your story...I will check in later.

Renee~a twitcher and afraid of that 3 letter disease :(
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I am so scared...

Postby Mimmi on April 8th, 2003, 8:05 am

Renee,

I was SOOOO happy to get your message!! I feel so lonely and my family and friends are getting nuts on me. They try to talk with me and convice me of the fact that my symptoms are not dangerous, but the whole situation makes my life a cathastrophy.

I am 32 years old and I have been twitching since August last year. One day it all started and the twitches spread all over my body. Everyday, almost all the time. Sometimes many at the same place, sometimes just a few, sometimes hard and sometimes more soft. I had an EMG done in the beginning of the autumn last year and they could find fasciculations in my muscles, not only in muscles where you can see and feel the fasciculations, but also deeper down inside muscles, more deep in my body. But they did not find any other "things" like denervation symptoms of nervs and so on - so "just" fasciculations....how to cope with that?!

One of the most scaring things is when I get some sort of deep twitches - deep down in my throat. It is not hiccup. Some strange twitches that are more deeper down and rhythmic. Often many twitches after eachother, but sometimes just one or two. I often wake up with this in the mornings....Great start of a new day.... :cry:

This weekend I was having a cup of coffee and I looked down at my right hand. I did not feel anything, but I noticed small twitches on one spot on the upper side of the hand. Since then I am twitching there - yes, it is three days now and the twitches do not seem to go away. I am getting crazy!! It is scaring since I do not feel them, but I can see them. I start to think that maybe this is because there is some damage of the muscle already and so on and so on.... and that is why I do not feel them.

Most of the twitches I can feel. They feel very diffentely as I mentioned above. Maybe I have fasciculations somewhere else, except on my hand, that I can not feel. I do not know since it is impossible to go through and examine the whole body all the time.

I am a single mother of a wonderful daughter. She will turn 8 this summer. I have a new boyfriend since one year ago and I am actually a woman that loves to live!!! But - this situation has totally made my life terrible. I can not work because of anxiety (right now just some hours a day....if I get up from bed...), I do not want to eat beacause I do not feel hungry, I am not a good mother or girlfriend. My whole situation is totally focused on this fear of having ALS and I do not know what to do!!

I am so happy that I have found this site and I will read as much as possible from the old letters here. I also hope to get some new friends here and that we together can try to help eachother! IWe all know what it is to have this scary symptoms and all the anxiety that comes with it!! It is a vicious circle and I do not know how to keep going. I am so afraid!!!

I have many other things to tell you all about, symptoms and so on. This is just a start.

Hugs / Mimmi
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Postby Jenn311 on April 8th, 2003, 8:41 am

Mimmi!

Girl, If you had ALS you wouldn't have had a clean EMG...and you would be incapacitated by now after 8 months. Listen, the more you stress, the more you twitch. Plus you are very young to have ALS...WHICH YOU DON"T HAVE. BFS tends to be anxiety related, and being a single parent is enough to send anyone to twitch (I know, I am a single Mom too...)

We have all been in the exact same spot as you, and until you realize that you are OK, except for an occasional twitch, you won't find peace. Don't let fear rule your life. THink about it this way, if you had ALS (WHICH YOU DON"T), and you wasted this time when you could have been spending quality time with those you love, wouldn't you look back with a huge amount of regret?

Talk to your doctor about some anti-anxiety polls or some anti-depressant medication. I was on it for 2 yrs after I started twitching and it helped me a huge amount. Maybe see a therapist, because your problem is now mental, not physical. DO it for your daughter's sake. We are here for you if you need to talk about anything. Good luck!
peace, Jen
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Postby fastpage on April 8th, 2003, 1:15 pm

Hi Mimmi:

It is the fear that will stir up the vicious cycle. I have just been through it again. I will get calmed down for a few days and then some new symptom will come along and I will be up for two nights worrrying and twitching more than ever. I finally started Ativan and it really helps. Jen311 (and Arron and many others) are right about anti-anxiety meds-they do help. If you have read the old posts here, (it takes a while but well worth it, I found) you know that you don't display the symptoms of ALS. Once that is ruled out, nothing else is all that frightening. Here I am giving advice when I was just back at the Dr.'s office yesterday so he could tell me again to quit worrying about my "latest" symtom. :?
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Hi Mimmi :)

Postby reneeintx on April 8th, 2003, 5:45 pm

Mimmi,

Hi I'm 39 years young. I've been twitching since the first of December. It started out as an eye twitch and over the next month the allover popcorn feeling took over my body.

I had an emg in January and have a follow up with the neurologist next Monday :shock: Oh what a fun time I will have :( I don't think he will do another emg though.

As for your "clean" emg, you should be very happy but I know the twitching is a constant reminder that makes our doubts surface again and again. I feel kind of weird in my chest sometimes.... twitching in there(a deep feeling) That scares me sometimes so I try to ignore it. I also get the ear canal twitches that makes a thumping noise in my ear.

I've talked to another twitcher that has denervation and renervation going on at the same time and she doesn't have ALS. She's had this going on for 5 years now. She even rollerblades :o

Please you have got to eat!!! When you don't you are going to feel shakey and weak and that's going to heighten your anxieties even more.

Why do you say you are not a good mother or girlfriend?.. because you're scared, anxious and panicky? and consumed by the fear of ALS? My family thought I was nuts when I told them about the twitching. I get the eye rolls.. so I don't even bother to talk about it to them. At least my husband is supportive.
I think alot of people here "have and had" the constant worrying. We try to cope the best we can(med's, exercise, yoga) Did the neurologist give you any anxiety med's? Those help sooooo much. I'm not consumed by fear of ALS every minute of the day(like I used to be) Because the twitching is almost gone with xanax(at least for 5 hours or so)

Oh yeah, twitches on top of the hand.. I have those.. I hate THOSE!! and the ones on the top, sides and underneath my feet. It feels like I have ants in my shoes :twisted:

Again, welcome to the forum. There's so many helpful people here.

Renee :)

By the way~you have already demonstrated that you are a strong person by raising your daughter by yourself. I commend you. That's one hard job all in itself.
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I can relate...

Postby Renae on April 9th, 2003, 12:51 pm

Hi there-

I'm sorry to hear you've been having such a rouch time with all of this twitching and any other symptoms you're having. I know many of us here can relate. And I can certainly relate to the anxiety that you've been feeling. I've had so many days where I just feel like I'm having a breakdown! I just worry myself sick. I've been twitching since July 2002 and have had many other odd symptoms that seem to be fleeting.

I'm sure you are a wonderful mother and girlfriend. Try not to be so hard on yourself...your body is doing strange things and sometimes its hard to convince ourselves that its a benign condition because it doesn't seem "normal". And sometimes its also seems like a viscious cycle because the anxiety seems to make things worse (at least for me). So, try to find some things you enjoy and relax. Everybody has different ways of relaxing. For me, I've found listening to meditation cd's before going to bed is nice. Its a nice way to end the day and keep my mind off "twitching"! Also, some light exercise...like a short walk can do wonders for your mind and body! A hot bath is also a nice thing! I know it isn't as easy as it sounds, though. Believe me...I've been dealing with the same feelings of fear and anxiety. I've recently started taking Klonipin and it has actually made a very noticeable difference. I feel much less worried and fearful and my twitching has become less frequent. I'm still not symptom free, though. But, some relief is very welcome! I actually just saw a Rheumatologist this week and he thinks I have Fibromyalgia, so we'll see!!

Anyway, sorry I blabbed so much! You take care of yourself and try to keep your spirits up! We're all here thinking good thoughts for you!

Blessings...
Renae :)
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Postby Davidd on April 12th, 2003, 1:23 pm

Mimmi-

As everyone here has tried to express to you, the hardest thing to deal with when it comes to these twitches are the MIND GAMES that go along with dealing with them. Some days the twitches are light and other days they are heavy. Other days the twitches seem to stay in one spot and then BOOM...they appear in some place new. Like you I have been twitching since last August (actually late July for me) and if you have no signs of weakness after this long then you do not have ALS.

There are some medications out there that can help you sleep and get yourself back on the right track. I know I took some for a short period of time. There are also some medications that can help alleviate the twitching symptons to some degree (klonopin, for example). The thing to remember is that life is fine even though you have these twitches...yes they are scary, but no they are not harmful.

Try to hang in there and keep your spirits up. You need to eat and sleep as best you can so that you can start to feel better.

Keep us posted!

--David
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Thanks to you all!!

Postby Mimmi on April 13th, 2003, 7:30 am

I am so grateful that you all take time and write to me!!! I feel so lonely with my twitches, anxiety and all that follows from this. I isolate myself more and more because I feel like a burden to family and friends , that are SOO tired of me and my constant need to talk about this. They can not understand what I am going through, and I understand that it is impossible for a person that do not have these symptoms to understand. And I understand that I am a "difficult" person to deal with. The most sad thing is that I am not able to take care of my daughter in a proper way (she use to live with me every second week, me and her father are divorced since several years). That feels very sad in a mother´s heart...

I am so happy that I have found you all! Feel free to contact me when ever you like! If some of you want to e-mail me, just tell me!!

Hugs from Mimmi
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Thanks to you all!!

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