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Catmom

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Hello, I went to a neurologist who suggested I had ALS based on my signs and symptoms. (Constant muscle fasciculations, positive Babinski sign, left side weakness and atrophy -atrophy in left hand and right around and now both calves- slurred speech and cramps where my muscles get stuck. Also have numb tongue and trouble swallowing, and possible oromandibukar dystonia) I was then referred to a neuromuscular specialist who conducted an EMG. During the EMG, for some reason he tested only the left side (wouldn't he need both sides for comparitive measures?) And he did not test the muscle groups that have the twitches. Further, I seemed to have only my rib twitching yesterday, and almost no twitching during my appointment. I know that EMG are only as good as the person conducting them, and he has rather poor reviews, but one of only two on my insurance. (They both have bad reviews)

So my question is, if I wasn't actively twitching during the test AND he didn't check my spots that twitch (other muscle groups) should I get a second opinion/second EMG? Or would ALS show in an EMG regardless of active twitches? He suggested waiting six months to see if there is further progression (I have progression but it has been 10 months, so very slow progression). However, if I do have ALS I'd like to start treatment asap because I have young kiddos.

So....wait six months or get an immediate second opinion?

I should add, they can't find another reason for my symtpoms, and said that it doesn't seem benign due to the progression and weakness and positive Babinski sign...but brain MRI and labs ok.
 

Nikki J

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It is usual practice for an emg to rule out ALS to be done on one side ( the symptomatic or worse one). If ALS is found they then do more to determine the extent of involvement. It matters not at all whether you were twitching. If the muscles tested were weak and or atrophied due to ALS it should show. They don’t need comparison. Either there are EMG findings consistent with ALS or there are not.

The emg that was done and 6 month follow up sound reasonable. Online reviews are notoriously unreliable. I would look more at the credentials- where a doctor trained and what certifications they have. If you have a trusted pcp maybe they can advise whether a second opinion is warranted.
 

KarenNWendyn

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Maybe I missed it in your post, but what did the EMG show? It would be helpful to us if you could post the conclusions from the actual report.

They are not going to diagnosis ALS/MND from the EMG alone. At most, they will say something like “EMG suspicious for (or consistent with) a motor neuron disease”.

ALS is a clinical diagnosis, and the history and physical exam have to be suggestive, mimics have to be ruled out, and some specialists insist on repeating the evaluation at a later date to document progression before establishing the diagnosis.

You might ask this specialist if there is enough suspicion to get you started on Riluzole right away.

And to answer your question, it doesn’t matter if the muscle tested is actively twitching. There are tiny fasciculations they can detect by EMG that you probably won’t notice. Also, EMG in ALS shows many other features besides fasciculations.
 

Catmom

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I did not get an EMG report. At the end of it, he said he just doesn't see it as being consistent with ALS. In fact, I did not even see him type anything or write anything down. My original neuro had texted him and he fit me during his lunch hour, so it was rushed. The nerve conduction took about 30 minutes and the EMG part took about 30.

In my online patent portal, the report has no numbers or findings, just says, "Not consistent with ALS" and that is what he faxed back to my Neuro. Kinda feel like squeezing me in during his lunch hour wasn't a great thing. Needless to say, if he doesn't produce a report, I am not going to pay the bill. It really seems like he was just poking me a few times to give her his opinion, not to make a full evaluation for himself.

But also, I am admittedly paranoid now. Like, do I have it? Do I not?
 

Nikki J

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You can request the full report. They generally don’t make notes but store whatever in the computer.

You have every right to the hard copy which should include columns with muscles tested going down and the things evaluated going across. Then there would be a summary which comments on abnormalities and patterns if any.

If the emg was done at a hospital affiliated site you can likely go online , print out a form and fax it. That is how my system works. I have an option of secure email which is in my case much faster than paper.

I would also make an appointment with the ordering neuro and ask to review the emg and now what should we do?
 

lgelb

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A half hour each for the nerve conduction/EMG studies is not unreasonable if he was not finding anything wrong. Of course, you and the ordering doc are entitled to the quantitative data and a report.

Everything Nikki said is true -- you should follow up, but a second neurology opinion that takes into account all test results is always advised for ALS and any other life-changing diagnosis.

Best,
Laurie
 

ShiftKicker

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Catmom, can you repost your emg pics after removing all identifying information please? This forum is public and we want to make sure your privacy is maintained. I have removed your last post in the meantime.
 

Catmom

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Doh...yes sorry. Did the whole post go away? I forgot what I wrote 😣

Ok, so I got the report, here's a repost without my info :) everything is normal. I called my other neurologist back and asked what the next step is, because BFS does not explain a lot of my symptoms (forgetting words, half of tongue feels like it doesn't work, slurred speech, muscle cramps, dexterity loss, atrophy on one sign, and Babinski sign, progression), and apparently I need a new MRI because my last one was technically before my symtpoms started (about a couple weeks before) and I got that MRI to check for an acoustic neuroma due to sudden sensineural hearing loss.

Long story short, this completely rules out ALS, or should I still get a second opinion?

I did have Lyme 4 years ago and maybe it is residing in my brains. Or muscle tissue.

Money is very limited, I can't keep doing all these tests chasing answers. I'd like to at least rule out completely ALS from my worry list, and maybe move on to checking my brain.
 

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Nikki J

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If you have weakness and atrophy if it were due to ALS then it should have shown up on the EMG.

I understand about costs of tests Mris and EMGs are very expensive. I would talk to the neuro and see what she thinks is on the table and what tests may be in your future. If you have a large deductible and are close to meeting it you might want to see if you should try to get more things done this year if they are needed. Be honest about the financial burden and see what she thinks.

I do think going back to the original neuro if you trust her is best as it is not clear which neurological subspecialty is needed
 

Nikki J

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And I am sorry I removed the third snapshot which included the emg as your name was visible. Everyone, it really was normal
 

Catmom

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Thanks.....so no ALS for me? That's good news! I did get money (thanks Mom,) for the second MRI which will be whenever my insurance gets around to the prior authorization. They denied the claim since it's so close to my first, so my doctor had to send additional information.

I'm guessing a second EMG with a different doctor will be a waste of money right now?

Also, I have a endocrinologist appt Monday. My labs showed nothing abnormal, my primary just wants to make sure she didn't leave anything off. Also negative for Lupus.

Thanks so much for your time reading this! I'll find this thread when I get my MRI to update you. Almost wondering if maybe I had mini strokes? I dunno, I try not to Google all the things it can be and focus on the abilites of my body today.
 

Catmom

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Can I have a positive Babinski sign without anything (serious) being wrong? Like maybe I just have a weird foot? (Sign only on my weak side/left side.)
 

Nikki J

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If you have clinically confirmed weakness and atrophy too it would seem something is wrong. Unfortunately it can take time and many tests to find an answer. Hoping it is quickly identified for you and easily treated. Do let us know what happens. Good luck
 

Catmom

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Will do, should have the MRI and results within a week or so. Probably won't get a second opinion on an EMG until Christmas time, at least then any more progression should be so blatantly obvious, there should be no second guessing. (pending whatever the MRI says.) If there is still nothing found, I am going to go ahead and assume chronic Lyme is a real thing (since I had Lyme in 2014 along with Cat Scratch Fever) and try all that herbal stuff to get rid of it lol. The 20 pound weight loss is the weird thing, especially since I started at 130 (my atrophy is muscular and almost looks like fat atrophy as well, like the pads of the fingers) but no other tests for anything is positive! Meh. Either way...I am here today, and thankful you are too to help support my pending ALS/take away ALS diagnosis :) Catch up in a couple weeks!
 

lgelb

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Since you said money is tight, I wouldn't spend a penny of it on herbs for Lyme from 4y back, esp. as your sx do not go back that far.

Are you saying the neuro actually suggested ALS to you before the normal EMG? That is rather unusual. If you can post any chart notes with the neuro findings on exam that prompted this statement, we could be more helpful.

Best,
Laurie
 
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