EMG on untwitching muscles

[Catmom]

Yes, sort of. I went in to a neurologist last week, and she was concerned but admitted her specialty isn't neuromuscular. She personally texted a specialist on her cell phone to get me in withing two days (there is a wait list of weeks usually) because she stated that I have a lot of signs that point to ALS. The next day, I called her crying in hysterics (after her words sunk in) and wondered what signs pointed to it. She then (probably sensing my tone) said that she just wants to quickly rule it out and to not be worried. When I went to the NM doctor, he said he had to see me on his lunch break because she personally texted him worried about me and did not want me to wait any longer. So, there's a little discrepancy there, I assume because she was trying to reassure me. The NM doctor said he saw no signs (other than my toe reflex on my left foot, which he said he wasn't concerned for, and the symptoms I verbalized but he didn't see except the slurring) but did not provide any more feedback only to refer me back to my original doctor. Today, at 4 pm, I called to ask about my brain MRI and she noted it should be redone, since my symptoms worsened, and originally to focus of the MRI was acoustic neuroma.

She trusts the other other doctor, and his bad reviews have more to do with his office staff than him, he does also teach at a local medical school so I assume he knows what he's doing in his EMG. I want to take this as good news, since I had a rapid progression of symptoms, then the progression (at least last two weeks) seem to have not worsened.

But, the nervousness in me is confused if my clinical signs vs. EMG . I should note, I have possible thoracic outlet syndrome which could explain the weakness in the arm, but the EMG ruled out nerve TOS, which means it may be vein TOS....which can lead to stroke.....so...geez. maybe I had a mini stroke? Anyway, my nerves now have me feeling like I had ALS for 4 days, and now I'm told I don't. I feel like a second opinion is maybe warranted, but maybe in a couple months? And I should spend money focusing on other tests for symptoms? That's my game plan. If I had money, I'd feed my anxiety and get a second EMG asap, but at this point a brain MRI, Lyme testing, rheumatologist, and maybe genetic testing (dad has some sort of connective tissue disease with essential tremor) may be a better way to find answers. The above replies made me feel better that an EMG would have caught something if it was ALS.

 

[lgelb]

An MRI looking for an acoustic neuroma presumably would have noted any other brain lesions that could cause slurring, I would have thought, and of course the images can be re-examined, sliced and diced. Is the neuro who wants you to repeat it a general neurologist?

It should really be your internist, ideally, who says, "You should see a rheumatologist because...", not you putting that on your list bc your dad has an unspecified CTD (as characterized by what specialty?). Sounds like you two might want to coordinate your dx journeys, if anything...but of course it would be unusual for the 2 of you to present a generation apart in the same period of time, and there should be some reason to think you have an CTD from labs, exam, etc. for a rheumatology referral.

I'm having difficulty recalling CTDs that have any relationship to many of your symptoms, and/or a 20 lb unexplained weight loss (was baseline BMI normal?) but hopefully our resident rheumie can weigh in on that.

Backtracking the Lyme...that's a money pit, nothing else.

I'm also having difficulty getting past a neuromuscular specialist saying nothing is amiss except slurring, and the rest of what you describe, I guess.

 

[Catmom]

It's my understanding that my neurologist just wanted me to pop into the NM doc for the ASAP EMG, as she did not want to do it because it isn't her specialty. I don't think she sent me to rule out/confirm anything other than ALS. Like, she intended to continue my career but just wanted him to do my EMG. Above you can see my results, I don't know anything about looking at the numbers, but the report was completely normal. The original post I was wondering if I needed to be having my symtoms at the time for the EMG to be proper, as I wasn't twitching in the spots he checked that day. Someone clarified that for me, so I am hoping for good news.

My past MRI started right before my neuro symptoms..it was actually an ENT who ordered it.

I should add, I have buldging C6/7 discs, degenerative disc (last MRI on spine 4/2018 showed mot major) and degeration in my jaw (most likely due to a head injury.

I also have chronic reactivated EBV with fairly high numbers, it was negative for EBV just last year, that tends to flair up every couple years. I don't think it's related to the neuro symptoms, but it can explain my brain fog, fatigue, and hair loss.

Are you saying I should quickly get a second opinion? Like, he would be so bad at the EMG that I would show no signs of anything?

Previous weight was 138 and I'm 5'4, current 118 and I'm 5'4. Weight lost from June-september. Like I said, I swear it almost looks like fat/tissue atrophy. But, it is also symmetrical and all over, so I feel like that helps Rule out ALS? My arm weakness also isn't constant. Somedays I can move my left arm, some days I can't. Which is how I originally got the Thoracic Outlet syndrome diagnosis. My big toe clinical weakness is permanent, as I can't bend it down. (Weird that EMG showed nothing there, but I did feel the vibration on that one test)

Frustrated to say the least. But, I'd like to rule out issues one by one, and move on the next, instead of focus on just ALS, if that makes sense.
Also, I've had no progression in two weeks (knock on wood) so that's good! And the tongue issue comes and goes.

Maybe I am just a mess. Maybe I have like, 10 diagnosis and nothing is connected. Like maybe I do have Thoracic Outlet, EBV, thyroid, BFS, migraines, dystonia, TMJ, and none are connected..��

 

[Catmom]

Just out of curiosity, I saw this in the pinned posts a good EMG checks under the chin and the Sternocleidomastoid area for bulbar ALS, mine didn't, only left arm, left leg, and I think thoric spine, but I have slurred speech as a symptom. I assume that since my legs are the twitching ones (I had Botox for face twitching) and my toe and foot has the weakness, it was still a good EMG? Like, legs won't twitch unless lower motor neurons were involved anyway? (I think he skipped the face due to the Botox in my jaw and chin)

Just checking because I'm ready to throw money and checking other avenues like the brain MRI and a PET scan was suggested for metobolic activity in my condyle in the jaw. Like, I don't want to waste time and money on health anxiety, I'd like to focus on doctors who may help. (Like it was suggested I go to an infectious disease doctor since I had Lumr and Bartonella 4 years ago.) And getting my MRI's

 

[Nikki J]

If your only symptoms were bulbar then one of those areas would have been appropriate. However you are reporting limb symptoms and what you had done was protocol for ALS screening EMG. If you have clinical weakness and atrophy caused by limb ALS it should have showed in the EMG. Are you thinking your limb symptoms are one thing and you coincidentally have bulbar ALS?

 

[Catmom]

No, I think it's all connected, I just wasn't sure because I'm a little obtuse in this area. I wish the doctor would have told me she's sending me for an EMG for protocy, not because she suspected NMD. :/ I went to her thinking the issue was maybe MS and she jumped straight to that. Like, once you hear it you can't unhear it. Even though We. Google isn't reassuring when you Google twitching, I didn't go to the doctor for a few months when it started because that is not what I suspected. I only went to the doctor because my migraines are weekly, and the weakness and slurred speech started. The weakness is in like "helper" muscles, not primary groups, so I can't do certain movements. Like, my big toe stopped bending and my dexterity to turn a screw driver stopped. Luckily, you guys have been more informative than my doctor, in easing my mind for a NMD. I had a second opion for EMG scheduled Oct. 17, but I'm going to cancel it and focus my time and money on what the actual issue is other than hyperfocusing on this. Especially when my EMG copay is 350.

I'm even suspect that my Chronic reactivated EBV is causing some neuro issues, but there's no treatment for that anyway.

 

[Catmom]

No, I think it's all connected, I just wasn't sure because I'm a little obtuse in this area. I wish the doctor would have told me she's sending me for an EMG for protocy, not because she suspected NMD. :/ I went to her thinking the issue was maybe MS and she jumped straight to that. Like, once you hear it you can't unhear it. Even though We. Google isn't reassuring when you Google twitching, I didn't go to the doctor for a few months when it started because that is not what I suspected. I only went to the doctor because my migraines are weekly, and the weakness and slurred speech started. The weakness is in like "helper" muscles, not primary groups, so I can't do certain movements. Like, my big toe stopped bending and my dexterity to turn a screw driver stopped. Luckily, you guys have been more informative than my doctor, in easing my mind for a NMD. I had a second opion for EMG scheduled Oct. 17, but I'm going to cancel it and focus my time and money on what the actual issue is other than hyperfocusing on this. Especially when my EMG copay is 350.

I'm even suspect that my Chronic reactivated EBV is causing some neuro issues, but there's no treatment for that anyway.

 

[dldugan]

After 3 months of tests including an EMG of both sides, my neurologist could not find a definitive cause of my issues. My primary issuses were left side weakness, neck weakness, fatigue after minimal exertion, and drop foot on left foot after a short walk. I then went to a muscular neurologist at Rush University Medical Center in Chicago. He only did one side, but he also did the back and arms. He did, as did his tech, at least 3 times more points than the previous doctor and diagnosed me with ALS. I have never had a lot of noticeable twitching, but over the last few months went from 1 leg cramp a year to one a couple time a month. I have also had weight loss. Tried to overcome loss by eating more and just gained around my waste while still losing muscle.

I am fortunate in that there is a Certified ALS Clinic close to me. Spent most of a day there this week and believe the diagnosis was correct. I accept that there is no definitive symptoms map that fits every case.

 

[Catmom]

I did go to a neromuscular doc. If you scroll up you can see my results. @dldugan are you saying I should get a second opinion ASAP? I figured I could wait until XMAs For a second opinion (I'm a teacher so I have time off) because by then at least it would be more obvious and I wouldn't have to second guess the findings. I'm only about 4-5 months into my symtpoms, though last Xmas I did start having tremors in some fingers. I just didn't go in to the doctor then because I figured human bodies are twitchy and weird.

I'm leaning away from a second opinion on ALS because I don't think ALS would cause these headaches, and my massive hair loss. Also, all of my weight loss/atrophy is 100% even and symmetrical all over, I don't think ALS is a symmetrical disease? Let me see if I can find my symptom sheet I wrote down for my neurologist and post it....

 

[Catmom]

Ok, on one image you can see the type of mass loss I'm experiencing, my fingers seem to be losing fat, not muscle? Leaving me with pruned fingers. I also look super buff because my tissue loss seems to be highlighting my muscles. In my leg picture, my shin muscles are popping because of atrophy....but like, fat atrophy. Like any tissue other than muscle on my leg is gone. I do have a few spots when the muscle appears to have atrophied, but I can't tell if it's muscle or fat from those spots.

Also, those two pages of symtpoms, only a few sound like ALS, right?

 

[Nikki J]

I think you need to talk to your neurologist to see what avenues she believes should be pursued next. It doesn’t sound like there has been enough testing to focus iin on ALS and go for a second opinion without having explored more avenues. Only your neuro knows what is still on the table though

We can’t tell anything by photos but if you have atrophy from ALS it is generally localized as is initial weakness and usually follows that weakness. Your neurologist could tell you ( and should have) if you have true atrophy.

You had an EMG that included back muscles done by a neuromuscular doctor who is also a professor. Your neurologist can look at it and decide whether more muscles need to be done but there is not a need to test EVERY muscle with symptoms if some are tested and they are negative.

 

[Catmom]

Thanks, that's what I thought. My focus should be more testing elsewhere. I do have Monday a lab where they check my adrenals and thyroid, inject me with something, then check again in 30 minutes. So far, my insurance denied payment on my MRI :/ If they deny the second round Tuesday, I'll go to the ER and usually based on a numb tongue and headache they will probably do an MRI. My neuro, the way she spoke about the muscular neurologist seemed to think he was an idol. She went on and on about how great he was and how he was perfect in every way, like she has a school girl crush (weird, but kinda cute) so I doubt she will say he did anything wrong or that more muscles should be tested. In fact, she does EMG's so I am not sure why she referred me out to him, but she is a personal friend and texted him personally to get me in within a week so I didn't question why she didn't do it herself (he webpage brags that she has extensive EMG training.) I am guessing because she isn't a neuromuscualr specialist and more of a general neuro? Also, she has seen me once, so she has no comparison for atrophy other than me saying I have lost 20 pounds in 4 months, since my loss is symmetrical except for a tiny spot on my hand (and she said my entire right arm is smaller than my left.....which is weird because I only have symptoms in my left, which is why he tested the left.)

I'll call Monday and reschedule my second opinion to either my Thanksgiving break or Christmas break (barring extreme increase in symptoms) and search other avenues. I woke up again with sudden sensinueral hearing loss and hyperacusis (spell?) and a major headache, which none of that points to ALS so I think exploring other avenues first is my best bet.

I did get a sudden burst of energy Thursday, and went on a 3 mile bike ride, and I am guessing if I had ALS in my legs (which I do have that Babinski sign) I wouldn't have been able to do that.

Thanks for helping prioritize which docs I should see! My PCP is a integrative doc so she has a tendency to throw herbs at me, which I typically don't believe in. I only go to her because she was the only provider willing to treat my low T3. Long story short, she just refers me to every specialist which for me, has a 70 copay, long wait times, and as a teacher is a different city in a rural town, I have to take the whole day off. For some reason, each specialist I have seen seems to know absolutely no medicine except their specialty. I even asked neuro about Lyme and she said, "Oh, I know nothing of Lyme, go to an infectious disease doctor." But I have also been referred to a rheumatolgist, endocrinologist, and a geneticist. :/

 

[Catmom]

Update: I have a gliosis foci flair spot in my brain from my MRI, which means CNS injury at some point, but for some reason my doctor wasn't concerned despite my neuro symptoms.

Also, my CPK was so low, they couldn't test the enzymes on it, which can happen with extreme muscle atrophy (I'm down to 118 pounds.) or bed rest (I am on my feet all day as a teacher and exercise.) SO that isn't comforting. Doctor is still not concerned.

I woke up with sudden sensioneural hearing loss. I am completely deaf right now, so going to be put on high dose of prednisone.

MS can cause that hearing loss, and ALL of my other other symptoms. But doctor is not doing the full work up.

With all of my symptoms, I am guessing I don't have ALS, but maybe something more. I may have all of the ALS symptoms, but all the extra ones makes me feel it's not ALS (correct me if I'm wrong, but statistically speaking, I doubt I got ALS and another disorder at the exact same time.) Plus, that posted EMG seems ok. Think I am taking ALS off the table. I'll have a repeat EMG in 3-6 months to be sure. Going to switch to a MS specialist and a rheumatologist.

 

[Nikki J]

While it is of course possible to have more than one condition given the emg results from a neuromuscular specialist and the other symptoms pursuing other avenues seems smart. I hope you get an answer soon. Please let us know what it is!

Good luck