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Antologia

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I'm from the Netherlands, and I couldn't find information on the web in my own country, so I decided to register on this forum and tell you my story...

Ten years ago I started noticing some weakness in my arms. I had problems cleaning the house, baking a cake (mixer was to heavy), ironing etc. It was not that I couldn't do it, it was just that my arms felt heavy, tired. No other symptoms. Because this feeling lasted, I went to the doctor, who send me to the hospital. There they did some strength and reflex test, all normal and they told me I just needed to do some sports (I didn't, at that time). So I did. It never got any better, but I learned to live with it. I was 27 that time, and I remember telling my mother that I wouldn't be surprised if they would find something like MS years later.

So, now we are 10 years later. For years, there was no real progression. I got married and became mother of 3 children. Now and then I had the feeling the weakness in my arms became worse, I had problems pushing the buggy, washing my hair and my husband always says when I'm cleaning: you need to push, not to care!

About a year ago I started running because I wanted to become fit after a bad pregnancy with a lot of pain. Within a few months I was feeling very healthy and had a good condition. Then I broke my knee and had an operation to fix it. I went to the fysiotherapist and they helped me to get back my strenght again. I noticed my muscles were shaking when doing exercises. I thought that might be because I lost some strenght when sitting all the time. I was making good progress the fysio said so I didn't think about it anymore. Then the following months I noticed more weakness. I don't know what started first, but I remember getting problems typing at the computer (heavy fingers, needed to stop tot rest), having tired muscles in my tongue when eating, tired muscles in my cheeck when laughing, and later on I experienced the same problem in my upper legs as I had in my arms for all those years. Climbing up the stairs gave me the feeling they got very tired, when running I started not to get my feet up high enough so I almost tripped now and then and going down on the stairs made me shake in my legs.

In april 2013 I started to search on the web for possible causes and of course you will find ALS when you google for weakness in arms and leggs. I read about the symptoms and it didn't exactly match for me. I didn't have fasciculations so I forgot it and lived on. Then, at the end of may, I started twitching all over my body. Mostly my leggs, but aslo my ear, my neck, my right arm, my back, my knees, my feet, even my vagina some times! They don't last long, mostly it's just a quick twitch, but it continues the whole day. Every second there's a twitch in a different place. Sometimes there is a hotspot, like my eyelid last weekend. It twitched very other minute a few seconds. After 2 days it stopped, but the twitches in the rest of my body didn't stop. Sometimes I have a twitch that lasts about 30 seconds, like one in my upper leg, I filmed it. Really strange. So, I remembered reading about ALS and fasciculations and then I got scared...

Of course I need to see a doctor if I am scared, I know none of you can say if this is ALS or not. But because I do not have things I really can't do, I seems stupid to visit a doctor. I feel weakness and I feel (and you can sometimes see) the twitches, but I do not have things like a flat foot or a finger that doesn't work. I can go on and off stairs, however I feel tired and unbalanced, but I can still do it and if I concentrate I can also do is quickly without holding myself. I also have a tremor in my tongeu while sticking it out and a tremor in my arms and legs sometime when I walk down the stairs or sit on the table with my elbow.

I hope the ALS patients on this forum can tell me if my symptoms do look like ALS or don't? Is the twitching ALS-like or not? I did read a lot about it, and I think it can be ALS or BSF. Maybe someone here had the same and discovered some other muscles-disease? Or maybe this is a none-typical start of ALS?

The twitches now are with me for almost 4 months. My idea was to wait untill november and then go to my doctor if they still exist. A Dutch website about ALS says that many people have fasciculations and not all have ALS so they say to wait for 6 months before you see a doctor. If I don't have function-loss in november, will that make ALS more unlikely, or not?

I hope there are some answers for me here.... Thanks for reading.
 

Nikki J

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Hi
First please read ( or reread) the sticky at the top of the forum on muscle fatigue. It talks about perceived versus clinical weakness.

In my opinion what you describe does not sound like ALS but if you are feeling unwell you should go to the doctor. Waiting 6 months if all you have is twitching is sensible but if you are sick please go now. Generalized twitches are not typical onset for ALS and tongue twitching when you stick it out means nothing! Neurologists have you rest your tongue in your mouth when they assess for tremor. When the doctor has you stick it out it is for other reasons.

I hope you feel better soon. (By the way as a child I lived in Leiden)

Best wishes
Nikki
 

Baileygirl80

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Hi, I'm not a dr and I don't have als, but what it sounds like to me is you are having precieved weakness, and benign fasciculation syndrome. Have you ever got your vitamins d and b12 tested? Also look into thyriod issues. I would check in with your primary dr and get some blood work done, and if you are still concerned have her send you to a nueromuscular specialist if possible to help ease your mind. This to me does not sound like als. True weakness with als as it has been explained to me is, you don't feel weak, you are weak, like you don't get tired going up stairs, you physicaly can't lift your foot, or can't open a jar, turn your key in your car and so on. Or as its has been said on here before, it's not how your body feels, it's how it fails. Good luck to you and hope you get some answers!
 

R9L13026

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or can't open a jar, turn your key in your car and so on. Or as its has been said on here before, it's not how your body feels, it's how it fails. Good luck to you and hope you get some answers!

I don't feel weak, but I get upset that I can't twist open a bottle cap on a water bottle, problems pulling open a package of lunch meat, not enough strength to carry a package, etc.

Just don't have the muscles to do much.:(
 

Barbie

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I highly doubt it is ALS , but it could be any number of other illnesses, many treatable. go to the doctor but try not to worry. do tell him that you are worried about a neurological disease--so he can put your fears to rest.
 

Antologia

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Thanks for all your reply's. I did make a docters appointment. I have that next week. Keep you posted.

In the meantime, the twitches are still going on, and I'm not happy to read that there are people that have them for 2 years without muscle-loss, and then start to get atrofie anyway.

I also experience a tremor in my body witch you can't see. Does that sound farmiliar? It feels like a fast heartbeat, but my heartbeat is not as fast as that tremor. It's quicker then the twitches. I feel it in my face sometimes and also in my back. Mostly at night.

It's so strange, the fascilutaions. I read some articles that BFS is rare, more rare then ALS is. And there are so many different ways of onset ALS, that I only can wait how this will develop. It would be so much better if there were a test and you know this is ALS or not. There are so many people with twitching and they all need to wait. Some of them have nothing like ALS, some of them do and some of them have some other disease. I feel really insecure. Want to believe I do not have ALS, age 37 and 3 young kids. But I can't ignore the weakness in my arms, legs, tongue and face. It is a week feeling, that sort of gives me hope, because you all say you don't feel weak, you are weak. I feel weak and I am weaker then I was, but I still can do everything. I just can't do it as long as I used to.
 

TeresaElizabeth

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Hello!
Im kind of on the same boat as you... I twitch all over. I've had 3 emgs in that last two months and they were clean. I'm not a doctor, but I do have this same fear. I still have twitches and random muscle aches, likely due to BFS and truthfully BFS is more common than you'd think & can be brought on by not only physical stress but illness. In my case I started twitching the day I got food poisoning. It was an isolated twitch then I read all the horrible things it could be and started twitching all over ( face, neck, back, belly, fingers, toes.... You name it, it twitches.) But I'm realizing now that if whatever I had was truly ALS my emg would have shown something. Your best bet is to go to a Neuro... Let him check you out. But know this BFS is way more common than ALS and actually there are many twitchers ( like myself ) who have stumbled upon this website and questioned whether or not they had ALS. Most of which probably have a good case of anxiety and BFS. I know I fall into that category.

Hope you get to feeling better!

Teresa
 

Antologia

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Hi Teresa,

I'm sorry you have the same twitching I have. I did read some of your posts. I'm not really an anxious type, neither did it start after food poisoning or some other situation that might could have start this. It just started, all of a sudden, in the middle of the day. And it never stopped since. I went to the doctor, but she says just to wait and see, which is very frustrating. I just made another appointment for october 22, to tell her I do want to see a neuro to do some test, as I don't like to wait when the twitching reminds me every few minutes there might be something wrong. If I have a clean EMG, I will be more sure it's nothing serious and that will make my mind stop worrying I think.

Do you also have spasms? And cramps? I do. I'm not sure if spams will match with BFS? Only thing I don't have, is function-loss. I can still do everything, but I do feel weak in legs, arms and tongue.
 

TeresaElizabeth

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From what I've read , it's not what you feel it's the truth behind the weakness. Muscle fatigue, cramps, and aches are all common in BFS. I went through the same fear of bulbar as well. But the emg I had of my bulbar region showed nothing. Also from what I've read body wide twitches can happen in ALS in the LATER stages of the disease. So by that time you and you have body wide twitches then it would be apparent that something was wrong.
I understand how difficult having BFS is, but worrying will make it worse. I think the worst part of getting told its BFS or anxiety is that there isn't a way to prove it. But stressing about it will only make it worse. Go to your Neuro, have them check you... Let them draw their own conclusions...
 

goolia75

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If you get on the "BFS forums" website, you will probably find that BFS is not as rare as some may claim. There are lots of people who twitch and have perceived muscle weakness. I would suggest making a post on that forum where there will be others who are likely going through the same thing as you. Good luck!
 

writer07

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I understand what you are going through as I have had cramps and Fasciculation in strange places including abdomen since 11/2011. I am not young and continue to worry. I have been researching since my onset and have found out that White Horse Diagnostics spinal test for ALS is in the validation process and should be available sometime in 2014, hopefully earlier rather than later. This may not help you now but it's better than waiting 4-5 years. I hope they find a cure for this very cruel disease and continue to be amazed at the helpfulness of members on this forum. I also have read that MCI 186, edaravone, has shown encouraging results and hope it will be available soon.
 

writer07

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Sorry, I meant Iron Horse Diagnostics
 

TeresaElizabeth

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Ok! So I read this on the BFS forum and thought it was an awesome quote!
"If you are saying "I feel" rather than "I can't" then it's probably not ALS."
Thought it was kind of neat and pretty relevant to those of us who worry.
 

Nikki J

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Love it Teresa! Wish we could put it on a banner at the top of this subforum!
 
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