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WeldonKA33

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Thank you all for answering questions everyday and being patient with people, I read the disclaimer about symptoms and it was very helpful.

I am a 33 yo male who is fairly healthy with no previous health anxiety or major health problems. In late March I began experiencing a recurring fasciculation in my left bicep muscle. It would twitch most of the day and wake me up twitching for about 2 weeks straight. I then started feeling twitches in other places including my hamstrings, calves, forearm and in my feet and occasionally hands. I am also having cramps, fatigue and some loss of balance leading ro a couple falls (never happens to me) I have also had pain in my neck and a very stiff neck at times making it difficult to turn my head. I have read other places that stiff neck could be an ALS symptom but haven't read anything about it here.

I went to my PCP and had lots of bloodwork including looking at mineral and vitamin deficiency, inflammatory diseases like arthritis and lupus, and thyroid issues. The only thing that came back was a low vitamin D level (I have been taking supplements since this news about 6 weeks ago).

I had a visit with a neurologist and received information that was different than what I have read on here and other places. The neurologist said ALS usually kills within 6 to 9 months which I knew wasnt the usual time frame. They also said that EMGs could show nothing one day and show ALS the next visit.

My question is do you think I should seek our a different neurologist before getting my EMG or allow the current one perform it?

I am also scheduled to relieve an MRI soon of my brain and cervical spine.
 

affected

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We stand by the sticky post you read and refer to. That's about it. See another doctor if you are not happy with the information you received. Let us know when you have a diagnosis and I wish you the best as they work through this with you.
 

WeldonKA33

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We stand by the sticky post you read and refer to. That's about it. See another doctor if you are not happy with the information you received. Let us know when you have a diagnosis and I wish you the best as they work through this with you.

Thank you for the quick response. I think I may see a different nuero. I am in a very rural area and there aren't many neurologists in this area. I have to drive a few hours to reach specialists.

In your experience is stiff and painful neck a common symptom? I know twitching doesn't mean much without other symptoms like clinical weakness and/or muscle wasting.
 

Clearwater AL

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Weldon, if this may help ease your mind worrying of ALS...

"I then started feeling twitches in other places including my hamstrings,"

Tendons don't twitch.

And, my opinion... that Neurologist you saw is Quack.

Being you are concerned that you may have a catastrophic terminal
disease, ALS, driving a few hours to see a a real specialist is without
doubt.

Hope you find peace of mind.
 

affected

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lgelb

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Possibly your neck is stiff due to a positioning issue as you work, play sport, during screen time, or sleep, and that bad positioning is also contributing to the twitching. The loss of balance could be fatigue due to lack of refreshing sleep, since you say you are waking up from twitching. You might also have some version of restless leg syndrome/periodic limb movement disorder that can cause twitching day or night, arms or legs, and is worse when staying still.

So before a big trip to see a specialist, though I certainly agree this is not a neurologist to keep seeing, you might try videoing your sleep and see what you can see. It never hurts to re-evaluate your mattress, pillow, couch and/or chairs. The MRIs will also help rule out a spine problem, another possibility, though I would make sure you get a copy of the radiologist's report given we are not sure about this neurologist's judgement.

Best,
Laurie
 

WeldonKA33

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So here is my dilemma-

I can get an emg next week with the neurologist who gave me misinformation in the past or I have to wait almost 2 months to see a different neurologist. I would like to get tested asap with my continuing symptoms but I question the expertise of this neurologist.

Is there a resource or website where I can learn what a proper emg test is like so I can figure out if this neurologist is administering the test correctly? If not I would appreciate the wealth of knowledge many of you have about EMGs. Once I get the test results I will share them here.

Thank you all once again.

God Bless.
 

Nikki J

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I would wait for the new neurologist. While neuro 1 may be perfectly competent in emgs ( assuming you need one) you do not trust them. There is much more to getting a diagnosis of anything than having a test and an emg is just that. it is an important one when considering ALS but must be interpreted in the context of symptoms, clinical exam and other tests. I could describe the emg process but since you don’t trust this person you would still question any results of emg as well as their exam and diagnosis
 

affected

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just wait if you are so worried about the first neuro, it really isn't all that long, though I truly appreciate that it seems so at the moment. in the meantime work on mindfulness and doing all you can to look after yourself and live. you won't get this time back regardless of any or no diagnosis so make it count.
 

WeldonKA33

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Thank you all for your advice. I am going to wait for the specialist appointment in July. I have been having trouble gripping things and bending my ring finger and pinky on my right hand. I noticed my palm/thumb muscle looks different. It almost looks like air bubbles under the skin, is this the beginning of atrophy?
 

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Nikki J

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Truly we can’t tell anything by pictures. They look fine to me but atrophy should only be assessed by your doctor examining you.

I think you made the right choice for your appointment. In the meantime try to follow Tillie’s advice and step back from worrying.
 

affected

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the sticky posts suggests that sending us photos is pointless - please go back to your GP if you can't wait for the neuro appointment and get help there. all the best, I know waiting is hard, but we can't do anything here.
 
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