Could this be ALS?

Celticdude

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Hello. Firstly I want to sincerely thank anybody who takes the time to read this post. What you do here is amazing and people like me can never thank you enough. Thank you, truly.

My name is John. 48 yrs of age. I've ongoing problems with my cervical spine and shoulder blade pain.

Four weeks ago I attended a chiropractor. The next day I felt very anxious and shaky, and felt a weird vibration feeling going through my body at night when I lay. I also began to have sudden body jolts at night and muscle fasciculations. The twitching is in my eyes, ears, legs, arms, chest, feet, neck, pretty much everywhere. The sudden body jolting has subsided and usually only happens now when I'm falling asleep. But the twitching remains, most noticeable when I'm laying and right now it's moving around my body. I went to the Dr and he tested my reflexes and muscle strength saying they are fine. The chiropractor did similar tests and got me to walk on my toes, push against him etc, everything was ok. I walk about 5km twice a day and other than the fasciculations, I feel ok. The Dr has arranged for a brain MRI and said his gut feeling is its nothing to worry about but I'm worried. I'm not sure if it's relevant, but I've also been under a lot of stress this past couple of years. My partner has been diagnosed with advanced cancer. My mum was also diagnosed with cancer and Alzheimer's, so I'm now the primary caregiver. I picked up covid in early 2020 which floored me for about 6 week's, I was lucky to get through it, and I developed severe Tinnitus shorty afterwards. In the weeks leading up to when the muscle twitching started I had been getting little or no sleep, averaging about three hours a night, because of the shoulder pain. Ive had bloods done and they were all clear although my Dr wants to check me for calcium and magnesium. I'm very stressed and very anxious, fearing the worst. Any feedback would be greatly appreciated. Thanks again.
 

Nikki J

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You certainly have a lot to deal with. I am very sorry about your mother and your partner.

the hallmark of ALS is weakness which you do not have. Nor do you have abnormal reflexes that are seen in upper motor neuron disease

please read this. Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms
I hope you will find it reassuring. It sounds like your twitching started when your system was overloaded physically and emotionally which is understandable. Please don’t stress yourself more by googling diseases there is no evidence you have. Let your doctor do their tests and concentrate your energy on your family and care for yourself
 

Celticdude

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Hello Nikki, thank you for replying to me, I appreciate it a lot. Its true I've had a lot to deal with but not more than you and many here. Its true I spend a lot of time googling it. I have myself convinced that I have ALS and will not be able to take care of my loved ones who need me now more than ever. I read on a lot of websites that fasciculations can be one of the first symptoms of ALS, with muscle weakness following? I read the post you put and it is reassuring but I'm still afraid. Ive tears in my eyes writing this message but thank you so much for your kind words
 

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No matter what you read elsewhere, twitching is only a symptom when combined with clinical weakness. Most people miss the point that when they see someone with ALS say they had twitching at the start, they also had clinical weakness.
This is like saying - I have a headache so I must have a brain tumour.
Please do go back to your doctor and get help for your fears and the right way to move forward to the correct diagnosis as you need all the support you can get as you fill this caring role in your family.
You may talk through anxiety and depression options too as this could be impacting things for you.
As a CALS I regularly saw a counsellor and took antidepressants.
All the very best, I hope you can work through this with your doctor now.
 

Celticdude

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Thank you very much for your reply. I have no clinical weakness etc but the twitching is still going on throughout my body. I also have tingly feelings in my legs and body, like a slight internal vibration. I received the results of a cervical MRI yesterday which showed a herniated disc and two bulging discs in my neck. I'll have a brain MRI this coming Friday. I'm hoping perhaps that this might be contributing to my symptoms as I've also a bulging disc in my lumbar spine. And perhaps as Nikki wrote earlier, that my system has been just overloaded recently both physically and mentally with the chiropractor just triggering something. I'm trying to keep positive and my mind distracted but it's not easy. God bless you and thank you
 

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Don't forget to ask your doctor for help with this anxiety - you have no ALS symptoms, so get help.
 

Celticdude

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I had a brain MRI on Thursday, waiting on results. Still having muscle twitching all over my body, very upsetting. No muscle weakness. I'm finding it difficult to convince myself that my symptoms could be caused by anxiety or something benign. Thank you for your support, you don't realise how much it means to me
 

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I hope you asked your doctor for help with this anxiety - twitching is almost always benign, yet you refuse to believe that.
Please be honest with your doctor about how much fear you are investing in this, anxiety truly can be treated successfully.
 

Nikki J

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For perspective please look at facebook groups for benign fasciculation syndrome and the subreddits r/bfs and r/ muscle twitches. You will find so many people with benign twitching
 

Celticdude

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Im sorry. I know you're most likely right. I will see my Dr soon and will ask for help with my anxiety. I respect your opinions and advice a great deal and I'm very appreciative. I guess it's just difficult to believe something so physical going on with my body could be benign. On a brighter note my partner just had her three monthly check up and cancer hasn't returned so that's given us all a huge lift.

Hi Nikki. Thank you very much again for your advice and time. I will check out those groups. I got the results of my brain MRI today and Dr said it's all clear. I'm not sure if I should go to a neurologist to try and investigate further. I'll be most likely waiting months and it's expensive. Maybe I should just try to get on with my life and concentrate on my family. I guess it's just terrifying to feel these muscles twitching all over my body and then of course Dr Google is the icing on the cake. Knowing what you know, and your experience, what would you do if you were me
 

Nikki J

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If I only had twitching? I would be doing cartwheels of joy. You can enjoy life and plan a future with your partner after her good news. Live every day because anything can happen to anyone anytime. Don’t waste time worrying and know Mr Google is a quack responsible for a lot of psychic suffering. Every minute you spend here and elsewhere online could be better spent loving your family and caring for them and yourself
 

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You only have one life and you can never relive a day again, so stop saying yeah I know but ...
How about you let your partner really feel like their clear result is valued and celebrated.

It is best for you to stay away from here now. Please don't post again until you have a diagnosis or a truly new something to report, we have gone over benign twitching enough, truly. You can do this, you can also ask your doctor for help if you can't do it alone.
 

lgelb

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Third that. There is no agonizing choice here except in your mind. But a vastly better life is in front of you for the taking.
 
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