cherrybug
New member
- Joined
- Jul 30, 2013
- Messages
- 3
- Reason
- Learn about ALS
- Country
- UK
- State
- lothian
- City
- Edinburgh
Hi to everyone.
I have read and reread these forums for weeks now and held off posting as I know that what I'm experiencing may not be ALS. However, I am a 39 year old mother of two young children and as such am so desperately worried that I am crying throughout the day and feel like I am going out of my mind with fear. So I thought it may help to ask people what they thought of my situation.
About 2 months ago I noticed twitching - in different areas of my body- back, calves, thighs, arm. Its fairly subtle, I can feel them but don't often see them. My husband can feel them too if he's cuddling me. I feel twitches regularly throughout the day, whilst sitting, driving etc. I notice them even more at night in bed when resting. Always fairly subtle.
I have never twitched before in my life. It has started out of nowhere and at a time when life was great with no stresses or worries. I've had full bloods done - no deficiencies found, no thyroid problems etc. I do not live in an area where Lyme would be a concern. I am not usually an anxious person and I have been in good health throughout my life.
I also have dizziness which started a few weeks after the twitching. I'm not sure if it is related or just a red herring. It coincided with a blocked ear that was syringed though two doctors I've seen since say they do not believe it is an inner ear problem and think it is neurological. The dizziness is not vertigo which you would expect with an ear problem. It seems to be worse if I am tired and is more like a swaying, lightheaded feeling. It is fairly debilitating. Am I right in thinking that if the dizziness is related to the muscle twitching then this is not a classic symptom of ALS.
I am now waiting to see a neurologist which is going to take a good few weeks despite it being an urgent referral from my GP. In the meantime I am crippled by the fear that I may have early signs of motor neurone disease. I've read all about BFS but I don't seem to have other symptoms consistent with that. I haven't had any recent virus, I haven't been exercising a lot, I don't have cramping or pain etc. One thing that is encouraging is that at present I do not have any weakness or atrophy that I've noticed. But can this follow twitching in ALS?
I've seen that some PALS noticed fasticulations before any other symptoms which is what is fuelling my worry. It seems that this is less likely though - is this correct? I also jerk a lot when falling off to sleep. I have done this on occasion throughout my life as normal but never regularly every single night as has been the case since the twitching started.
I hope this post doesn't irritate people too much, I can completely understand how tiresome it must be for those who are living with MND to have to constantly hear from people filled with anxiety about usually benign symptoms. It is the most fear inducing disease and I intend no matter what the outcome of my personal situation, to do what I can to raise awareness and support research into the condition.
Thank you for reading.
I have read and reread these forums for weeks now and held off posting as I know that what I'm experiencing may not be ALS. However, I am a 39 year old mother of two young children and as such am so desperately worried that I am crying throughout the day and feel like I am going out of my mind with fear. So I thought it may help to ask people what they thought of my situation.
About 2 months ago I noticed twitching - in different areas of my body- back, calves, thighs, arm. Its fairly subtle, I can feel them but don't often see them. My husband can feel them too if he's cuddling me. I feel twitches regularly throughout the day, whilst sitting, driving etc. I notice them even more at night in bed when resting. Always fairly subtle.
I have never twitched before in my life. It has started out of nowhere and at a time when life was great with no stresses or worries. I've had full bloods done - no deficiencies found, no thyroid problems etc. I do not live in an area where Lyme would be a concern. I am not usually an anxious person and I have been in good health throughout my life.
I also have dizziness which started a few weeks after the twitching. I'm not sure if it is related or just a red herring. It coincided with a blocked ear that was syringed though two doctors I've seen since say they do not believe it is an inner ear problem and think it is neurological. The dizziness is not vertigo which you would expect with an ear problem. It seems to be worse if I am tired and is more like a swaying, lightheaded feeling. It is fairly debilitating. Am I right in thinking that if the dizziness is related to the muscle twitching then this is not a classic symptom of ALS.
I am now waiting to see a neurologist which is going to take a good few weeks despite it being an urgent referral from my GP. In the meantime I am crippled by the fear that I may have early signs of motor neurone disease. I've read all about BFS but I don't seem to have other symptoms consistent with that. I haven't had any recent virus, I haven't been exercising a lot, I don't have cramping or pain etc. One thing that is encouraging is that at present I do not have any weakness or atrophy that I've noticed. But can this follow twitching in ALS?
I've seen that some PALS noticed fasticulations before any other symptoms which is what is fuelling my worry. It seems that this is less likely though - is this correct? I also jerk a lot when falling off to sleep. I have done this on occasion throughout my life as normal but never regularly every single night as has been the case since the twitching started.
I hope this post doesn't irritate people too much, I can completely understand how tiresome it must be for those who are living with MND to have to constantly hear from people filled with anxiety about usually benign symptoms. It is the most fear inducing disease and I intend no matter what the outcome of my personal situation, to do what I can to raise awareness and support research into the condition.
Thank you for reading.