Living In Fear of ALS

[eHemmingway99]

Hello!

I've been having these twithes for more than 4 years now. From the first day I've had them I've always though I was seriosly sick, especially when I first looked up my symptoms on the internet and found that fasciculations is one of the symptoms of ALS. Since then (4 years!!) I have not been able to get this of my mind I have had many sleepless night becasue of this. The first year, I went to a doctor (two times) and he told me I was nothing to worry about. That made me calm for about one week but then again I could stop thinking of it ;( However, I never told the doctors what I was afraid of (ALS) becasue I was afriad that he would take me for a nerd. Well, for 4 years I've had this and it has been bothering my mind all the time... seldom I can relax from it totally. However, I'm a medstudent and I've once read that there is a condition that called benign fasiculations. Once, some months ago, I asked a neurologist about this and he said that I was very unlikely that this is serious. This made me calm for a while but whenever I hear about ALS on TV or whatever it flipps my mind. So yesterday I searched the Internet for "benign fascicultion" and I got a few hits. So LUCKY. I realise that there are many people out there with the same fears. And then, today, I found a forum for this!!!

Thanks for reading!

 

[boyzshaking]

Hi Swed!

Yeah it's scary isn't it? I've had it six years.

You might consider visiting a neurologist and asking for an EMG just to close this worry up. Yes it's right it would be highly unusual for it to be anything bad after four years with no progression, but there are other conditions than ALS that can cause twitching, including hypothyroidism for example. Or low calcium.

If you have the clean EMG and clinical exam (which I'm sure you would) then you'd be reassured by the Mayo Clinic study on BFS, which followed up on 120 or so BFS patients years after their visits (they all had clean EMG and clinical exam). Not a single one had gone on to develop anything neurological at all. So as a med student I think you ought to find that reassuring.

good luck

 

[eHemmingway99]

Hi Twitchingthenightaway!

Thank you for answering! Can I ask you how it started for you? I was sick for a week or something, mostly I was dizzy and maybe I was suffering from a virus infection. After this, it all started, then I was 21 and now I'm 25 ) BTW, how old were you when you got this and how did it all start?

 

[Mike1980]

Hi Swed-
Welcome to the club. It can be a scary thing, especially when the anxiety kicks in. One of the worse things happens when you can't sleep which makes the worry and the muscle stuff worse. I have only been dealing with it for 9 months now, but have run the range of stuff from panic and terror that I had ALS to the occasionaly worry now but more the irritation of the twitches, the pins and needles and the wonder if I will ever get back to the way I was.

You have found a great community here at AboutBFS. It has been very helpful for me and I hope it is for you too.

Peace;
Kent

 

[eHemmingway99]

Kent,

Thanks for replaying! And I guess I'm in the club now I can't get in my mind that so many are going through the same thing that I've been dealing with! I thought I was alone and that I was going cRaZY Good thing I found this forum and hopefully it will make my life a bit easier.

Best regards,
/S

 

[Levenith]

Fellow Swede here. I found this site last week and was just amazed to see how many people there are like me out there. Then I see you today and realize that there are people llike me here too. People just stare at me when I tell them my symptoms.
I am 38 and I don't really know when this started. I am an avid runner, biker and skier. I would say that I am an "elitmotionär" and I think this twitching started some time last fall, I always felt them in calves and thighs after a good workout. Then this spring I fell ill (sinus inf) two weeks before Vasaloppet and it was then that I realized that my whole body was twitching. Doctors here just tell me it's stress. The really bad news for me though that I am now experiencing weaknes in my left hand. This started after a 100 km bike ride (now doing Vätternrundan). Even though I have this I had to force the GP to refer me to a neuro and an EMG. I am doing that in Uppsala next Thursday.
What I wanted to ask you was if you exercise at all and can correlate these problems to it?
I am so scared. You know everything that has been up om ALS lately. That is probably why the docs are so annoyed with me too. There are probablymany people out there with ALS-anxiety. I have five children and I can hardly look at them without crying. It feels like I am going to die from them.....................
Also wanted to ask other people here: can the twitches really be benign and cleared on an EMG if you FEEL them outside the skin, almost like a pulse?
Thanks/S

 

[garymills]

Svenska,

first let me tell you that the twitching can really be benign and feel the way you described. In fact it is quite common among the members of this site. If there is a problem such as als, the emg will show it. So you shouldn't have to worry much longer. But I wouldn't worry if you have had a normal physical exam. Also, perceived weakness is very common among members on this board including myself. So I wouldn't get to worked up about the weakness in your left hand.

Good luck,
Gary

 

[Levenith]

Thanks BillBob,
This is killing me. I will force myself to feel calm when I get the EMG results if they are fine. I will also get my life together and seek some kind of help for this anxiety about my health. For every child I have had I have gotten more and more scared.
So glad I found you guys though!
/S

 

[garymills]

A person can never understand worry (or love) until you have children. They are the most wonderful and stressful thing a person can have in their life, and I feel so blessed to have such a beautiful baby girl. It is a good thing she looks like her mother !

Gary

 

[Levenith]

Lol, Gary! I have four boys and a little baby girl, so our house is never quiet! It is wonderful.... /S

 

[eHemmingway99]

Thank you Garym, Svenska for your reply.

Svenska: Yes, I often feel that I get more twithes after running or after a walk, e g in my leg. Not that I do sport very often but I have noticed this just like you say.
Good that you got the appointment with the neuro, then hopefully you can but this behind and never worry about this any more. It's crazy how these twitshing can affect your life, I'm so glad I found this place because I thought I was the only one going through this (and I have been thinking so for more than 4 years).

 

[lightbloom]

I just wanted to jump in here and say I'm glad I found this site too. I was beginning to think nobody else but me had these bizarre symptoms.

I haven’t been officially diagnosed as having BFS, but I wonder if that’s what I have? For the past 5 weeks I’ve had sporadic muscle twitches in both my legs…and occasionally a few in my arms, abs, buttocks and shoulder area. The twitches are like quick muscle jumps or sometimes just dull ripples under the skin. I also have a constant feeling of internal vibration/buzzing in my left leg and hip area. I feel the buzzing most when I’m sitting down or lying down. The vibration isn’t even visible…but I can feel it. It seems less noticeable when I’m walking, distracted or preoccupied. I haven’t experienced any abnormal fatigue, weight loss, pain, imbalance, weakness, nausea, headaches etc… It’s mainly twitches, a vibration and occasional muscle ache.

I saw a doctor 3 weeks ago and my reflexes checked as normal. The doc didn’t seem to think anything serious was wrong…but he left me the option of seeing a neuro if my symptoms worsen. I haven’t bothered to go back though because my symptoms keep waning on and off. Some days are better than others. I guess the hardest part is not thinking about it or stressing too much.