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cherrybug

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Jul 30, 2013
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Learn about ALS
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UK
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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.
 
None of us can tell you "no" for sure, if your neuro thinks it is a possibility he will schedule an EMG. That said, I very much doubt that you have ALS and I don't think it's something that you should be sitting around worrying about. Fasciculations are simply not uncommon, and they are no reason to worry about life threatening diseases. Get off the internet, enjoy your kids and your life, wait for your doctor appointment. Hanging out here and looking things up will only fuel fear.
 
Cherry,

I understand your fears. I'm not a doctor, but I've never heard of dizziness being an ALS symptom. Also, in my own experience, twitching came only after clinical weakness and after the atrophy had begun.

Please try to relax ( impossible?) as best you can. I don't think what you describe sounds like ALS. Good luck at your neuro consultation, and let us know how it goes.
 
If it makes you feel any better, my early symptoms did not include twitching or dizziness... We cannot say that you don't possibly have ALS, but its highly unlikely from your symptoms. Try to get your mind off the annoying twitches, take more vitamin D3 and B12 to see if that helps them... and enjoy your kids.
 
Cherrybug

Your posting caught my eye. I am not from this community, but I will give you some advice. If you actually have a serious neuro disease, then I recommend the following. Its the only thing that I know that has a chance of working. 1. Learn and read about the Marshall Protocol, then (2) acquire the drug called "Pure Olmesartan". No doctor in the UK will perscribe it for you, as they will lose their licence, for any off label useage of any drug. You can get the drug from China, but join the MP community first ( see marshallprotocol.com ). Dosing will be 25mg every 6 hours. It has a stronger effect on the brain than the standard Olmesartan Medoxomil.

Good luck.

Nick B.
 
Thank you all so much for your replies. I sincerely appreciate it.

I find them reassuring though of course until I see the neuro the worry will remain. I am concerned that the dizziness is a red herring and is actually unrelated but it is helpful to hear that the twitching is not a common early symptom. I just go around in circles wondering what on earth is going on, thinking its unlikely then feeling convinced its not. I will post back once I've seen the neuro - whenever that will be. The wait is torturous.

Thank you again and many good wishes. I wish there was something I could say to accurately communicate the respect and the heartache I feel for those with this disease.
 
Cherry, I hope you get to see the neuro soon, the waiting and not knowing is agonising. Keep doing everything the same as you always have! Let us know how it goes, love and hugs, Anne
 
Thank you so much.

Saw GP again this morning as I thought he may offer some reassurance whilst I wait for neurology appt. He made me feel worse saying that MND can often come on very subtly in the early stages and that my urgent referral was definitely appropriate to investigate further why I was having fasticulations. He did do a very basic reflex exam and Babinski and said this was normal.

I guess that doesn't tell me anything more than I already know but it's upped my anxiety and fear.

I'll post back when I know more - still no word of neurology appointment.
 
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