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ronnieg48

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Hi, I’m a 53 year old male in good overall health with no previous neurologic concerns that is seeking feedback on the symptoms I’ve been experiencing over the last 5-6 weeks.

First symptoms late November 2021

Muscle twitching that started in abdomen that spread over the next week to just about every location equally on both sides of my body (arms, legs, hands, feet, stomach, back, face). I’ve had some muscle twitching in the past even as far back as a teenager, but never this widespread, persistent or diffuse moving around randomly to various locations which has been particularly concerning with such an abrupt onset.

Early December

Had pretty intense muscle spasms in both thighs after normal cardio routine at gym that were painful enough that I went to the ED to be evaluated. Vitals, blood work and urine analysis and CT of my head were all normal. PCP thought I might have had a drug reaction to just starting an SSRI that may have caused the muscle spasms, so it was discontinued right away. Intermittent muscle cramping continued for a couple of weeks and seemed to be worse if I had to be on my feet a lot. I started to notice that my reflexes seemed overly sensitive, i.e., if I bumped into something with arms or legs there seemed to be an exaggerated reaction to it. Also, when falling asleep started to have entire limb jerks (arm or leg) intermittently.

Late December

I’ve gradually been able to resume exercise without any significant issues other than feeling a little more fatigued than usual for 1-2 days after working out. Arm and leg jerks have almost completely resolved at this point.

PCP referred me to a Neurologist and saw them on 12/28. Was told that overall, the exam was pretty normal without any clinical weakness detected, but that reflexes were “brisk/jumpy but not too bad”. However, due to reflexes an EMG was recommended to rule out ALS or anything serious and has been scheduled for 1/13. Extensive bloodwork was ordered to check for other abnormalities and still waiting for these results although I assume they were normal since I haven’t heard otherwise yet.

The muscle twitching has continued and been very bothersome, so I started taking magnesium supplements and this has seemed to reduce their frequency quite a bit over the last couple of weeks.

Questions
  • Would brisk reflexes together with my other symptoms be suggestive of ALS even without clinical weakness or any loss of function? Note: I had an annual physical at the end of September 2021 that was normal and nothing was mentioned about my reflexes at that time. Also, got annual Flu Vaccine in mid-November so unsure if this could cause any of my issues or not
  • Neurologist ordered a four limb EMG. Is a four-limb study the standard to rule out ALS?
  • Neurologist said she may have to refer me to a Neuromuscular Specialist to review the results because she doesn’t have that level of expertise. I’m told that it could take 3-6 months to get an appointment with a specialist so I’m wondering whether a referral occurs if the EMG results aren’t normal? Any advisement here would be greatly appreciated because 3-6 months is a long time to wait to have the test results provided and left to wonder what they are
Thank you for this wonderful service and providing feedback on my questions.
 

lgelb

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No. And if jerks resolved without association with clinical weakness, even more reason they had nothing to do with ALS.

The muscles tested in an EMG are based on many factors, including the neuro's personal preference and how they trained. The criteria for diagnosis are what is standard -- what kind of findings in which regions, and so on.

Whatever the referral delay, the report should be available to you via your medical record, and you can confirm this before undertaking the test. The neuro sounds like she is covering the bases, not seriously concerned about ALS, nor have you presented any reason why she or you should be -- a very good thing.

If an SSRI contributed to your issues, discontinuing it may not magically stop them right away. That can take time. Taking good care of your stress, sleep, exercise, diet and hydration often helps.

Best,
Laurie
 

affected

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Sorry you are going through this.
May I ask, did you ask the neurologist if she thought you have ALS?
 

ronnieg48

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Thanks a lot for your reply. Very helpful and much appreciated.

No, I didn't specifically ask the Neurologist whether she thought I had ALS or not but just the fact that it came up as something to be ruled out with the EMG due to brisk reflexes was unsettling. She did mention BFS as a possibility too, but since her expertise isn't Neuromuscular I just wanted to get some more feedback on what others thought about my symptoms while I wait on the EMG and test results.
 

affected

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Thanks for answering that. I only asked because you have so little that would even begin to suggest ALS, it seemed like it was being ordered to try and settle your fears. This happens a lot, and then has the opposite effect, with the person getting all worried they are being tested for ALS because the doctor thinks they have it.

Are you aware that ALS is only one of hundreds of things an EMG looks for? Maybe the EMG is being ordered for other concerns as brisk reflexes on their own would never suggest ALS.

So to answer your questions:
1. no
2. no, EMG are done in every combination for many reasons
3. 'may have to refer' means if there is anything glaring in the EMG that needs checking she will refer you on. as noted, you can see the EMG results as soon as they are on your portal. You can post the summary here when you get it for comment.

Other than that, we wait for the EMG and try not to let this consume you. I say this as someone who went through months and months of specialists and tests with my own husband, so I'm not meaning that flippantly. You won't get this time back regardless of what tests show what results.
 

ronnieg48

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Update on my test results. All bloodwork came back within normal limits. The EMG and NCV/NCS were performed today by the Neurologist in the practice that has a Neuromuscular specialty. I was told by the Neurologist after testing that the NCV was completely normal without any concerns whatsoever. He also said that the EMG needle portion of the four limb study "definitely showed no signs of ALS or anything serious at all". He did note some abnormalities in the C5, C6 region of my cervical spine and suspects there could be something degenerative going on that is compressing the nerve roots so an MRI was recommended of neck/spine to investigate this further to see if this has been contributing to my symptoms. With all of this in mind I was greatly relieved that ALS or any serious neuromuscular disorders had been ruled out.

Fast forward two hours later and I receive a call from the Neurologist that performed my physical exam back on 12/28. She has received the EMG and NCV test results and tells me the same thing as the doctor that performed the test. Says she will schedule me for the MRI, but still wants me to see an ALS specialist at the University Hospital at least once for further evaluation. I'm completely puzzled at this point and ask why I need to do this and she tells me since I still have muscle twitching and she found my reflexes to be jumpy this is important so that nothing is overlooked.

I politely pushed back and asked why I should continue to chase this further when I have no showed no signs of clinical weakness, no loss of function and have just been told I have had a normal EMG and NCV study with the exception of something to be investigated with my cervical spine.

She relents and says well that's fine as long as I make the appointment if I start having any trouble swallowing or problems with my speech neither of which have been of any concern whatsoever, but I agree that I would schedule the additional evaluation if these symptoms occurred. At this point I'm thoroughly confused why the doctor is pushing the ALS concern so much and unsure whether I should continue to pursue this further unless additional symptoms develop. Any additional feedback and insights on this would be greatly appreciated.
 
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lgelb

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"Why" can be as simple as personal connections, concerns about lawsuits (maybe she or a colleague has something pending -- this can be very troubling and cloud judgment), revenue considerations for sister/affiliated institutions, mutual referral networks, etc.

The MRI is appropriate, but no reason to suspect ALS, so I'd leave that appointment for someone who needs it. Your call, of course.
 
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