The story so far:
I am 34 years old, mother of two. In July last year I noticed a difference in the way I was walking on my left leg, in the foot area. I could still walk but was using other or compensating muscles to achieve the same walking style. I am an Australian living in Singapore. I saw a very well established Neurologist in Singapore and he pretty much thought I was imagining my symptoms however sent me for a brain MRI anyway. This came back clear. I forgot about the walking issue for a while however noticed that it was slowly getting worse. I saw the same Neurologist again and he still implied it was in my head. I then found another Neurol0gist who believed I wasn't imagining it and he has been monitoring me ever since. With him I have had a spinal MRI and a VER which have also come up clear. He initially suggested ALS could be what I have but still too early to tell. I saw another Neurologist in Sydney in December and he couldn't definitively diagnose anything either. My symptoms to date are as follows:
1. Walking getting progressively worse however can still walk. I am physically placing my foot down rather than it naturally moving forward. The right leg is okay.
2. Muscle fascillations, all over body but they come and go. The doctor gave me some nerve relaxing medication, if I stop taking it the fascillations come back. They feel like bubbles/ worms under my skin. Whilst on the medication they are here and there but not that troublesome. The medication could be giving the appearance that they have gone.
3. Just recently muscle twitching has occured. These I can see on the surface of my skin. They move around my body, mainly in the arms at the moment.
4. Eye floaters developed in about November last year and have become progressivley worse.
5. Constant fatigue, there is the rare day when I feel okay but most days I need to sleep even if it is only for 15mins. I am usually okay after that but not as sharp as I use to be.
6. In the last few months I've noticed my left calf muscle has started to shrink. Given my amended walking style I can see how this would happen but I can't seem to build it up.
7. In the last few weeks my jaw bone has started to click when I open my mouth or yawn. My tongue has also felt thick and is now pressing against my teeth. I have teeth marks on my tongue.
8. For the past few months I've felt a numbness on my face, it comes and goes and I feel my face muscles are getting weaker. My smile has also changed. My cheeks feel heavier when I smile.
9. For about two weeks in March, I had trouble breathing, I couldn't take deep breaths, or would need to "breath twice" to fill up my lungs. This symptom has gone but I do get short of breath quite often. Voice projection is weaker.
10. I am told I have nazally speech but I kind of always have so I'm not sure if it is getting worse or just what it use to be.
Does this sound like the early stages of ALS. I am contemplating coming to the USA to visit one of the ALS clinics and get yet another opinion. I'm not sure if the disease is as common in Asia. I read somewhere that ALS in younger fitter people may take longer/is slower to develop/? Is this true? My doctor here says if it was ALS and If I've been showing symptoms since July 06 it would have progressed alot faster. Please, any feedback on my situation would be greatly appreciated. The prospect of having this disease is doing my head in.
Julie
I am 34 years old, mother of two. In July last year I noticed a difference in the way I was walking on my left leg, in the foot area. I could still walk but was using other or compensating muscles to achieve the same walking style. I am an Australian living in Singapore. I saw a very well established Neurologist in Singapore and he pretty much thought I was imagining my symptoms however sent me for a brain MRI anyway. This came back clear. I forgot about the walking issue for a while however noticed that it was slowly getting worse. I saw the same Neurologist again and he still implied it was in my head. I then found another Neurol0gist who believed I wasn't imagining it and he has been monitoring me ever since. With him I have had a spinal MRI and a VER which have also come up clear. He initially suggested ALS could be what I have but still too early to tell. I saw another Neurologist in Sydney in December and he couldn't definitively diagnose anything either. My symptoms to date are as follows:
1. Walking getting progressively worse however can still walk. I am physically placing my foot down rather than it naturally moving forward. The right leg is okay.
2. Muscle fascillations, all over body but they come and go. The doctor gave me some nerve relaxing medication, if I stop taking it the fascillations come back. They feel like bubbles/ worms under my skin. Whilst on the medication they are here and there but not that troublesome. The medication could be giving the appearance that they have gone.
3. Just recently muscle twitching has occured. These I can see on the surface of my skin. They move around my body, mainly in the arms at the moment.
4. Eye floaters developed in about November last year and have become progressivley worse.
5. Constant fatigue, there is the rare day when I feel okay but most days I need to sleep even if it is only for 15mins. I am usually okay after that but not as sharp as I use to be.
6. In the last few months I've noticed my left calf muscle has started to shrink. Given my amended walking style I can see how this would happen but I can't seem to build it up.
7. In the last few weeks my jaw bone has started to click when I open my mouth or yawn. My tongue has also felt thick and is now pressing against my teeth. I have teeth marks on my tongue.
8. For the past few months I've felt a numbness on my face, it comes and goes and I feel my face muscles are getting weaker. My smile has also changed. My cheeks feel heavier when I smile.
9. For about two weeks in March, I had trouble breathing, I couldn't take deep breaths, or would need to "breath twice" to fill up my lungs. This symptom has gone but I do get short of breath quite often. Voice projection is weaker.
10. I am told I have nazally speech but I kind of always have so I'm not sure if it is getting worse or just what it use to be.
Does this sound like the early stages of ALS. I am contemplating coming to the USA to visit one of the ALS clinics and get yet another opinion. I'm not sure if the disease is as common in Asia. I read somewhere that ALS in younger fitter people may take longer/is slower to develop/? Is this true? My doctor here says if it was ALS and If I've been showing symptoms since July 06 it would have progressed alot faster. Please, any feedback on my situation would be greatly appreciated. The prospect of having this disease is doing my head in.
Julie
