First ever post Abnormal EMG/early ALS ?

[Vike]

I have read the "Read before posting" page over the last few months so many times I lost count. Before joining today I have literally been using that single page as my rallying cry/reassurance that I don't have ALS when many other sites take you straight to it. That was enough to keep my anxiety at bay....until this week when all that changed.

Yes I have read that fascics are rarely, if ever, the first sign. No I don't have muscle weakness anywhere, in fact if anything I have gained muscle/weight in the recent past. Yes I had a normal neuro exam (albeit not anywhere near as exhaustive as I thought it would have been). I was told during that exam that I don't have any clinical signs of MND and that I had signs of peripheral neuropathy (light prickling sensations I still get) and restless leg syndrome. So why am even here some of you are already asking ?

I am here because I had an abnormal EMG Monday with several fibriallation areas (1+) that pointed to Bilateral L5/or S1 radiculopathy.....(I know this is not an Orthepedic site, I get it). The problem is that the EMG Dr's findings were negated this morning by my Ortho who had already done a lumbar MRI that basically said that while I had a small herniation at that disc (with mild facet hytrophy) it was apparently not enough to equate to radiculopathy (pinched nerve). Ortho is deeming the MRI to be negative.

Yes I also read that there are 100s of non fatal reasons people can have an abnormal EMG. My Ortho freaked me out when she said I was the very first patient she has ever had who had an abnormal EMG and that she thinks what I have going on is more Neurological and essentially knew what I was concerned about (MND) but said she wasn't going to say the words.

Do I take solace in that the NCV was normal ? Do I take solace that the Sural nerve amplitude was normal arguing against any ganglionic axon loss of significance? (his words) Or that there were no fascics on the EMG ? Do I take solace in the fact that recently my entire right leg was pins and needles after sleeping on it. (ALS doesn't cause that but was that unrelated ?) To complicate matters my Neuro (who himself had ordered both upper and lower EMGs) refuses to review the EMG ordered by my Ortho ! They are making me come in as scheduled to do another set of EMGs in January ! I am literally in nuerological limbo ! Is it time for a new neuro? new Ortho ? Both ??

My symptoms started post Covid in early June where I had vertigo, that went away briefly, then returned and finally went away in August. Brain/upper spine MRI done- normal. 7 vials of blood at Rhumetology (all normal) Then I had muscle spascity where after using an arm vigorously it would twitch for a few days before it contracted. That went away. Then I had twitching all over the body. That subsided once I started treating inflammation that was causing me to have insomnia. What caused the inflammation ? (Anxiety ? Disc issue? who knows) Once I tackled that, the twitching would only happen sporadically and then usually only in bed. I had muscle pain in calves where I was excercise intolerant. That went away.

I had painful jolts that would radiate to my feet. That went away. (yep I know ALS does not cause pain I get it I hear ya talkin !) I had creepy crawly feelings in legs. That went away mostly but not 100%. (I took Feritin and got better sleep). I know I have read that "You can't do an EMG too early" and that most people have symptoms first that an EMG would catch way before you had symptoms. Am I that rare case where my EMG is catching those symptoms now and it is only a matter of time before it progresses to the point where I do? My EMG was normal at the L4/L5 but abnormal at the L5/S1 and all myotomes(muscle groups) that relate to that nerve.

I have read that ALS typically does start in a single nerve root. Sorry for rambling, it's been a bad few days and today a lot more twitching and creepy crawly/tingling sensation (yep I know ALS doesn't cause tingling but it's more like lightning bug feeling than actual pins and needles/parathesia feeling). Bottom line: No real symptoms but an unexplainably bad EMG (The Gold Standard)

 

[lgelb]

A negative MRI does not rule out radiculopathy. Why not get PT and see where it leads?

The simplest explanation that fits all the facts is that you have radiculopathy, full stop. And maybe RLS or a similar disorder, or just pain in sleep that is creating restlessness and making the pain/numbness/tingling worse. You might also check the support of your pillow and mattress. A latex overlay and/or pillow can do wonders.

Given the sx that do resemble RLS (which can appear in arms, too, and not only at night), I would also ask about a sleep study, which your PCP can order along with PT.

As to the rest of your questions, my rx would be to block all ALS sites/searches and just hang out with your PCP for a while. I don't see the point of new EMGs unless there are new exam findings that point to it. And yeah, a neuro that refuses to look at data doesn't sound very data-driven.

Your EMG is NOT unexplained. It is not supported by the MRI, but that is pretty common. They measure different things in different ways. PT as an empiric treatment can help clarify future directions for supporting your back, if you'll pardon the pun.

 

[Vike]

Thank you and I have started PT. I was 100% on the same page as you as was the EMG Dr.
My Ortho Dr is the one who shot it down and she sounded pretty confident about it. Any concern with the Bilateral "ness" of the abnormal cluster of muscles ? I think I read on this site that that is the hallmark of ALS on an EMG. (unless I'm misunderstanding) Also I don't want to have been one of those where Lumbar Radiculopathy was actually early onset ALS (as I have also seen to have been reported in at least one study)

 

[lgelb]

You read the opposite. Typical ALS onset limb problems are unilateral except for the flail arm and flail leg variants, which look nothing like this EMG, which doesn't resemble typical limb onset, either. That doesn't mean that an ALS EMG wouldn't show bilateral damage, because nerves die before you can tell, but the pattern of abnormalities looks very different than this.

Your ortho may be trying to be transparent about what doesn't match up, but I really don't believe she suggested that you have ALS based off the EMG or anything you've said. You have no sx of ALS. You don't have an EMG that looks like it. So the excellent news is...you're in the wrong place.

 

[Vike]

Thanks for all of your insight and knowlege and I truly do hope I am the wrong place ! 1 follow up question if you don't mind. I have read that on an abnormal EMG like mine it's almost impossible to tell the difference between radiculopathy and early (like very early) ALS and that suspected "radiculopathy patients" have even gone through needless back surgeries only to find out later that it was ALS all along. Are you saying it's good that my fibs are bilateral whereas if it were truly ALS, (even very very early before symptoms arise) it would most likely show fibs and PSW's on one limb vs both ?

 

[lgelb]

It is not true that radiculopathy is commonly confused with ALS. By the time you have issues, motor neuron damage beyond that of the nerve roots exiting the spine is evident on EMG or on a clinical exam, or almost always both.

That "needless back surgery" is rare and generally related to a lack of a second opinion and a thorough investigation of all possible neuromuscular causes. That is why we advise second opinions for all spine surgeries, an increasingly controversial area of medicine in itself, not just all ALS diagnoses.

More important than your fibs being bilateral is that the R side of the EMG table is all the way normal.

 

[Nikki J]

My sister and my aunt were two cases of unnecessary spinal surgery. In spite of family history neither had second opinions, neurology consults or emgs first unfortunately. I can think of several other cases but none had any of the above.

 

[Vike]

Thank you, this is the document that has me concerned. http://eknygos.lsmuni.lt/springer/586/289-298.pdf

 

[lgelb]

It's a sentence from a chapter in a 2007 textbook that notes EMGs in radiculopathy and ALS can at first glance appear similar, but on careful study, are not. Honestly, it's one of those intro sentences that is supposed to make people stay awake in reading the chapter -- dramatic effect.

I would add that the concerns they expressed in 2007 have been largely addressed through improved technology, more subspecialists, etc.

 

[Vike]

Sorry I'm just really struggling right now and I appreciate the replies, I truly do. I have e x t r e m e health anxiety and I am really really really not doing well. (2 therapists, and 2 anxiety meds aren't putting a dent in my anxiety) I realize my EMG doesn't resemble ALS now, but I did have 8 areas of denervation and seemingly the only explanation other than MND is radiculopathy (That I really don't think I have either." On the "read before posting" page it mentions......."But an abnormal EMG can indicate hundreds of other, non-fatal, diseases...."
I took solace in reading that, but why is my case seemingly one or the other ? I like my odds with 100's vs 1 out of 2. Am I missing somethng?

Twitching is back and back big time espeically during REM sleep. Creepy crawly RLS feelings are gone and now it's just twitching on top of thighs, middle of calves and achilles areas waking me up (during REM) leading to really crappy sleep. Seeing if I can get Baclofen next.

 

[ShiftKicker]

Hey Vike,

There are quite a few other forums and support groups that provide peer support and feedback for people who are struggling with health anxiety. This forum is not set up for the kind of anxiety support you are looking for- we exist to provide support and information for the day to day and broader issues that arise for people dealing with a diagnosis of MND or who are caring someone with MND.

If you have not been diagnosed, we have some information, which you have already been given, and we can provide a little direction, but after that it's up to the person inquiring to seek appropriate help from either their doctor or from the before mentioned peer support groups. NoMorePanic has a forum with a subsection dedicated to those worried about ALS. There's a good subreddit to be found under "MuscleTwitch". FB has a good group "BFS Recovery", as well any number of health anxiety groups.

I'd recommend giving yourself a break from researching and engaging here- it's triggering more anxiety for you. That's not a healthy place to be. I really hope you can turn away from here for a few days at least to give yourself a break and seek more appropriate support in places less focused on the thing you fear.

 

[lgelb]

So instead of anxiety about the anxiety, what about asking about a sleep study to r/o movement disorders, giving PT a chance (it's been only a couple weeks?), and evaluating how/where you sleep, all as per above? We can't play ping pong here, Vike. That's for counseling.

You've got some really good options to get to the bottom of things, but as ShiftKicker notes, this is not the place. It needs to be IRL. Ask for a referral to a sleep clinic, be your own detective, video your sleep, etc. Block ALS sites.

The reason we are keying on radiculopathy vs. ALS is you, not us. There's no reason to think of ALS. There's every reason to think of radiculopathy, which is definitely one of those 100s of conditions.

 

[Vike]

Update: Second EMG was much better and done by an actual neurologist. NCV was normal, also said no Motor Neuron loss,
EMG was a lot more normal than last but he said he could tell I had prior denervation in my foot but that he said reinnervated.
Was evidenced by the large MUP. (I asked if that meant it from collatorel sprouting and he said "you're either in medical field or you've been reading." He said I don't have ALS....I had something going on in the L5 at one point. I guess I should be reassured that because I had no fibs or PSW in that nerve so I take that to mean that it is currently not "denervated" ? That's the take I got from him. Different Neuro so the chart is not like the other one. (I'm sure somewhere he has it but I haven't found it yet, just what he has below). He didn't do the left side, not sure if because was because the table was against the wall or because I am right side dominant and didn't feel a need to ?

Side Muscle Ins Act Spont Act Fibs Psw Fasc Amp Dur Poly Recrt Int Pat Comment
Right Deltoid Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right Triceps Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right PronatorTeres Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right Ext Indicis Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right 1stDorInt Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right VastusMed Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right AntTibialis Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right Gastroc - Medial Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right Ext Dig Brev Nml Nml Nml Nml Nml 2+ 2+ 2+ Nml Nml
Right FDIp Nml Nml Nml Nml Nml Nml Nml Nml Nml Nml
Right Thoracic Parasp Mid Nml Nml Nml Nml Nml Nml Could not relax the muscle

Normal nerve conduction study of the right upper and lower extremities, there is no evidence of entrapment neuropathy or peripheral polyneuropathy. Normal needle EMG in the right upper and lower extremities as well as the mid thoracic paraspinal muscles. There is no evidence of fasciculations, active denervation, or chronic denervation with the exception of the right EDB muscle which showed slightly increased motor potentials amplitudes with polyphasic configuration consistent with a chronic L5 radiculopathy.

 

[ShiftKicker]

Oh lordy, that's a whole lot of overthinking and assumption. A specialist will not make electrodiagnostic choices based on convenience or where the furniture is positioned in an exam room. They made a choice based on clinical findings and history. If you want to know exactly why they made the choice they did, you must ask them, as it's likely going to net you more real information than strangers speculating online.

It is entirely up to you whether you will be reassured by your excellent results or not. This forum has provided you with as much information and reassurance as it can. If you have further questions, please visit with your medical care providers. You have been cleared of ALS, which is seriously wonderful news. I am closing this thread, please do not open another.

Please take care