Please help, i need guidance on what to do next.

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Thestarroom71

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Hi everyone. I'm sure I am not the first or last of my kind to come here looking for opinions, i hope someone can help me with guidance, but I also know that I need to trust my doctors over anything.

With that being said, I have been experiencing symptoms that are confusing and my anxiety is latching onto ALS and it is something I need opinions about if anyone is willing to help.

8 months ago I began experiencing neck pain and had an mri done of my cervical spine and thoracic spine, my neurologist said it was underwhelming outside of some cervical disk bulge that he said wasnt enough to give my symptoms.

Since then I have been experiencing a malady of different aches and pains, including a small clot to which I am on eliquis for now. Including pain in my heels when standing, and pain in my hamstrings and calves and upper back.

1 month ago I started getting left arm pit achiness and neck pain that have given me chronic headaches, and 3 weeks ago I was playing guitar and my left upper arm got a weird flushed feeling and I put down the guitar and seconds later I got a piercing pain behind my left shoulder blade to which I originally thought heart attack but got that ruled out.

Aside of all this my same tricep has been twitching nearly daily, with any kind of tricep activity or upper arm activity at all my tricep will twitch for days.

Fast forward to my EMG 2 weeks ago, nerve study was clean and my EMG was clean outside of the left tricep, the dr said it could be related to my cervical discs.

My neuro wants to redo the cervical mri and brain mri, but at this point I'm terrified about ALS because the presentation is so widely varied in each different case.

If it is a pinched nerve, I havent been getting much tingling or numbness or shooting pains typically attached. I just have a deep achiness from the armpit region and the chronic tricep twitching. No twitching anywhere else outside of my right eyelid.

I also am afraid to exercise because I'm scared to aggravate whatever is going on. I also know that pinched nerves can cause muscle weakness or atrophy, which as far as I know I dont have yet. Definitely feel sensitivity in my tricep when exercising.

Does anyone have any guidance? I'm a lonely person and I need help figuring out my next steps.

This is highly unlikely to be ALS at this point?
 

Nikki J

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Yes highly highly highly unlikely. As in it wouldn’t be on my radar even. If you care to post the emg ( name removed) we could take a look if you want
 

Thestarroom71

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Thanks for your response. I dont have a copy of my EMG but I will try to get a copy monday morning.

Part of me wants to redo the EMG but if I'm still experiencing symptoms in my left tricep area my reading will probably be the same.

This sucks, I dont know what to do from here.
 

Thestarroom71

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Is the fact that the EMG picked up something in my tricep concerning? The EMG dr didnt seem worried but its stressing me that it picked something up in the same spot I'm experiencing symptoms.
 

Nikki J

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No it isn’t. Localized findings are common and not concerning. Your symptoms are sensory which is not ALS and point to something else And twitching which is so non specific as to be meaningless. emg s have many reasons for abnormalities spinal issues being one of them. Als has a pattern which it sounds like you don’t have and is widespread on emg. And again your symptoms are not those of ALS
 

Thestarroom71

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Thanks for the reply. Can you keep this thread open until monday so I can post my EMG results?

Part of my wants to redo my emg
 

Nikki J

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We only close threads if the original poster breaks the terms of service or posts repetitively so much that it is uncontrolled. Otherwise posts close automatically if not used but that takes months. Certainly, post your emg Monday. Just remember to remove your name
 

Thestarroom71

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Still working on getting my EMG, will take around 3 days according my my provider.

Cant help but worry over ALS with my persistent tricep twitching. I woke up this morning with it again.

Even with the slightest of use out of my left arm my tricep starts going. No nutritional deficiencies as I supplement everything related to twitching and cramping.

The fact that my twitch is so localized has been stressing me.

My hope is that I have an irritated nerve that it causing the twitching, but i dont have really any other pinched nerve symptoms, and my pain isnt severe so that points me away from any radiculopathy. I'm just lost and nervous.
 

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ALS doesn't start in the triceps. You have zero loss of ability, a clean clinical exam, and a no ALS EMG. Therefore, no ALS. If the doc thought you had a terminal illness so severe, that most ALS patients do not live past 2 years, do you think they would send you away without telling you? No, they would discuss your need for end of life planning and write a script for Riluzole.

You don't have ALS, so go live your life and stop wasting time you will never get back, worrying about a disease you do not have. If it makes you feel better, when you get your EMG, do post the summary/conclusion part, with any identifying info removed.

Best of luck to you and stay safe.
 

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Twitching means nothing at all. All the best - just come back to post your results, and follow your doctors advice.
 

Thestarroom71

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Thestarroom71

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Posted the emg results. Chronic partial reservation in the myotomes is what is worrying me.
 

Nikki J

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That is not at all an emg suspicious for ALS. From what you had said I was expecting local acute denervation which still would have been unconcerning. You don’t even have that! Just some chronic stuff that could be your neck, an old injury or nothing at all
 

Thestarroom71

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What is the relevance of acute vs chronic in terms of Als? If you dont mind me asking.
 

Nikki J

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You get acute denervation and then quickly chronic denervation with it in ALS. The active process does not go away it coexists with chronic It is also a widespread process.
 
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