Antologia
Active member
- Joined
- Sep 7, 2013
- Messages
- 62
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- NE
- State
- ZH
- City
- Amsterdam
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 is, it was just that my arms felt heavy, tired. No other symptoms. Because this feeling lasted, I went to the docter, 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 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, nog 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 sad so I didn't thinks 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 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.
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 is, it was just that my arms felt heavy, tired. No other symptoms. Because this feeling lasted, I went to the docter, 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 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, nog 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 sad so I didn't thinks 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 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.
