ANDMON
Member
- Joined
- Sep 21, 2013
- Messages
- 22
- Reason
- Learn about ALS
- Country
- QAT
- State
- qatar
- City
- Doha
Hi there,
Really I need the help of people with bulbar onset. Please answer me!
Sorry if I keep telling my “stories” that scare me, more and more, day by day. I have lot of fatigue, weakness in legs, arms and neck (although I can walk and do some easy jobs in my house).I can eat and drink without “choking” my speech still clear…but I have I very strange feeling in my tongue. I observe that sometimes when I’m eating or drinking the food goes up in my nose and my left eye. Even when I’m breathing small drops of saliva gets into my nose and then into my lungs. When I want to swallow thick saliva from behind my nose the tongue gets stack deeply in my mouth and I try so hard to bring it back in the normal position. It’s happening more frequently even when I’m asleep .In those moments I feel like I swallow my tongue (which I know it’s impossible). After these episodes I’m swallowing a lot, even there is not too much saliva. I have fasciculation all over my body even in my tongues, which are just a few per day especially in the morning when I wake up and in the evening. All started in September with numbness in my hand, a kind of weakness and then with twitches and strange stiffness of all the muscles of my head (face and scalp).I spent lots of money with neurologists (back to Europe), blood tests that came back normal, clean head and cervical spine MRI, normal electrolytes level, slightly low B12 and D3, 2 EMGs (one normal, the second with myogenic modification in my right arm, no tongue fasciculation).Next month I’ll travel again for another tongue and Fiber EMG. Till that time I’m just very, very scared and so tired of all what’s happening to me .I’m afraid that ones the tongue will remain stack and I’ll end suffocated. Are all these symptoms of a bulbar onset? (The twitches are less than before and the tingling of my face is reduced compare with the starting time).I appreciate any kind of answer you can give me, nice or tough and also I ‘m grateful to all those that will ignore me. I dare to ask you because in USA you have specialists in ALS and … I realize reading your answers that there are still angels without wings.
God bless all of us!
Marcia
Really I need the help of people with bulbar onset. Please answer me!
Sorry if I keep telling my “stories” that scare me, more and more, day by day. I have lot of fatigue, weakness in legs, arms and neck (although I can walk and do some easy jobs in my house).I can eat and drink without “choking” my speech still clear…but I have I very strange feeling in my tongue. I observe that sometimes when I’m eating or drinking the food goes up in my nose and my left eye. Even when I’m breathing small drops of saliva gets into my nose and then into my lungs. When I want to swallow thick saliva from behind my nose the tongue gets stack deeply in my mouth and I try so hard to bring it back in the normal position. It’s happening more frequently even when I’m asleep .In those moments I feel like I swallow my tongue (which I know it’s impossible). After these episodes I’m swallowing a lot, even there is not too much saliva. I have fasciculation all over my body even in my tongues, which are just a few per day especially in the morning when I wake up and in the evening. All started in September with numbness in my hand, a kind of weakness and then with twitches and strange stiffness of all the muscles of my head (face and scalp).I spent lots of money with neurologists (back to Europe), blood tests that came back normal, clean head and cervical spine MRI, normal electrolytes level, slightly low B12 and D3, 2 EMGs (one normal, the second with myogenic modification in my right arm, no tongue fasciculation).Next month I’ll travel again for another tongue and Fiber EMG. Till that time I’m just very, very scared and so tired of all what’s happening to me .I’m afraid that ones the tongue will remain stack and I’ll end suffocated. Are all these symptoms of a bulbar onset? (The twitches are less than before and the tingling of my face is reduced compare with the starting time).I appreciate any kind of answer you can give me, nice or tough and also I ‘m grateful to all those that will ignore me. I dare to ask you because in USA you have specialists in ALS and … I realize reading your answers that there are still angels without wings.
God bless all of us!
Marcia
