ALS or some other MND?

codyclan

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Okay, here's the thing. We see this misconception all the time. Feeling weak, perceived weakness, etc... is not a precursor to clinical weakness in ALS. I know that is extremely difficult to understand if you are not experiencing it. It's difficult to explain, but in ALS you don't start out 'feeling weak' and then develop clinical weakness. It just doesn't work like that. ALS affects the motor neurons, not the sensory ones. So the brain sends the signal to move and the nerve that tells the muscle to move doesn't work. So the muscles don't feel sore, they just don't move. I know what you're thinking, well wouldn't the other muscles feel sore as they are compensating? And the answer to that is: no, that is not really the case. My husband was surprised when he was told he had clinical weakness in some areas as he didn't feel weak.
Your symptoms do not suggest ALS. Continue to work with your doc, but you should refrain from posting until after your EMG.
Tracy
 

IssuesInOhio

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Hello- I have an update and a few questions in regards to my EMG.

I completed my EMG on Thursday. It was done in a lot of muscles. Both calves, one top foot, both quads, both hips, lower back, upper back, shoulder, both tricps, both hands, and tongue. Probably about 20 different spots. The person doing it was not my neurologist, he was a younger individual so probably not tons of experience behind him yet in terms of EMG test but he seems proficient from my layman’s perspective.

I haven’t done a follow up with my neurologist yet to get the official results, but the doctor performing the EMG did tell me what he saw bc I asked him at the end.

He did a quick clinical exam on me before the test, reflexes normal and strength tests normal.

He did say that he saw the muscle loss in my legs during strength exam, particularly my quads. He sounded a little surprised like “ oh yea, I actually do see that”.

The EMG results saw fasiculations, I saw them on the EMG while he was doing the test, but everything else was normal is what he told me.

I am relieved about this result. I do have some questions I am going to ask the neurologist, thought I’d post them here first.

Do they record the EMG study so other neurologist can weigh in? I was hoping my doctor would look at it?

Is it possible to have early MND or ALS, where by you do have some muscle wasting, cramps, and fasciculations, and still have a very comprehensive EMG not pick it up?

Does the experience of the doctor interpreting the reading during the test play any big roll or would any trained neurologist see the abnormalities that would show in a dirty EMG as long as enough spots are tested?

There were a few spots that he couldn’t get a good reading bc the muscles wouldn’t relax. Lower and upper back along my spine, which have been problem areas for me. Is that normal?

Thank you to everyone that has taken the time to respond and for the reassurance. I greatly appreciate it.
 

Nikki J

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I have never seen an emg recorded like a video. Sometimes there are screenshots in a report

The symptoms you report and the muscle wasting should definitely show on an EMG if they were ALS

While the EMG is as good as the examiner I do think the changes of ALS would be hard to miss. I got to see the screen during some of my research EMGs. I am no neurologist but I watched what were fibs and psws and I knew they didn’t look remotely normal. I don’t see how someone educated in emgs could miss them. You can look up your examiner’s credentials. I don’t know where you were but an my hospital I know the EMG doctors have completed a 3 year fellowship following a five year residency.

It is extremely common that the paraspinals are hard to read.

It sounds a very thorough EMG Your question at the follow up should be about what could be wrong since your emg was normal
 

IssuesInOhio

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Thank you for replying Nikki. Just out of curiosity, do fibs and psw show up on EMG when muscle is relaxed or flexed? I don’t think my EMG tech has done a ton of them, but he certainly tested a lot of spots on me. Probably 20-25 total.
 

Nikki J

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Relaxed ( that is before you purposefully tense when so instructed)

I was curious that you keep saying technician. I looked it up. In Ohio only physicians can perform the needle portion of the ncs/ emg per the medical board
 

IssuesInOhio

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Relaxed ( that is before you purposefully tense when so instructed)

I was curious that you keep saying technician. I looked it up. In Ohio only physicians can perform the needle portion of the ncs/ emg per the medical board
Yes, apologies, I’m probably using the wrong word. The person that did my EMG was not my neurologist. There was a person that did the Nerve conductor study and that was a technician for sure and then after another person came in and he was a neurologist but not mine, but he knew my doctor. I just don’t understand with the level of muscle loss in my right quad how nothing showed up. I’m certainly not looking for trouble, but I figured it would give me some answers as to what’s causing my muscles to waste.
 

KarenNWendyn

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Ohio, your post has gone on to three pages. You don’t have ALS. At this point, it comes across to me that you’re still trying to make a case for why you believe you have ALS, that something was done incorrectly, that the tech wasn’t properly trained, etc.

Step back for a sec and realize you’re trying to convince people who have ALS, are caring for a loved one with ALS, or have lost a loved one to ALS. Sorry to sound harsh, but our patience is wearing thin. I would suggest that if you still have questions or concerns that you discuss them with your neurologist.

I wish you all the best, truly.
 

IssuesInOhio

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I have been referred to a neuromuscular specialist who is doing another EMG in the beginning of July. I have lost a lot of tissue around my ankles, calves, left tricep over the last 45 days and it continues to progress at a fast pace, no clinical weakness though. Certainly not a BFS case. If I get a diagnosis of something I’ll stop back to update, so that it might help someone else with similar symptoms get an answer. Thank you to everyone that weighed in on my posts.
 

KarenNWendyn

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The beginning of July is not far off. Please update us after the neuromuscular appointment.
 

IssuesInOhio

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I just got back from my EMG. This was with a neuromuscular specialist. I had an EMG on 5/14 that was totally clean except fasiculations. I was told by that neurologist (5/14) that my symptoms were not caused by MND and I didn’t have to worry about it. My reflexes have been normal.

Today my EMG was NOT clean. It showed signed of denervation in 2 spots in my left leg. The neurologist on 5/14 definitely did these areas. My calf and my muscle in the shin area. I asked him if it showed fibs and sharp waves and he said yes. I asked him if the machine was wrong or if he was mistaken and he said he is 100% sure. I don’t have the report yet. The neurologist said it could be ALS but could also be other stuff, but the look on his face said a lot. I’m numb right now, fluxuating btw pure panic and hopelessness. How am I going to tell me kids eventually, they are so young, they still need me. I don’t understand how I had a clean EMG and now dirty? I’m only 42? How could I go through this in 2008-2011 and be diagnosed with BFS and then now actually have ALS? I don’t know what to do :(
 

Bestfriends14

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Could you please post the summary/conclusion part of your report. Hide all identifying info, please. Your conclusion of your EMG does not mean ALS, and since you've had no ALS symptoms I.e. clinical weakness, you may have not heard the neurologist correctly. If you had ALS, they generally tell you immediately, write a script for riluzole and tell you to put your affairs in order. They don't send you on your merry way to ponder the results.

May I ask what the doctor said as a follow up? What are next steps? As well, why ALS? Why this one disease, which you dont evidence having, is foremost in your mind?
 

IssuesInOhio

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Yes, I’ll post it when I pick it up later today. He didn’t say “ this is 100% ALS”, he said “Yes, this could be ALS but we have to rule some things out like pinched nerve”.

He is ordereing the usual. No need to explain, I’m sure most know how that all goes from here. I don’t have clinical weakness but I have something not right that I feel that i think is weaker. Cramps and twitching to, all over but worst in my legs. That was my 5th EMG in 11 years, 2nd in the last 6 weeks. Don’t get how I got a clean EMG then dirty, especially after having twitching and cramps since February. I guess that blows that whole theory. Obviously, they aren’t going to give me a diagnosis until this progresses to a point of it being blatant and very obvious, but I know when the writing is on the wall. It’s not a pinched nerve, and the twitching isn’t isolated to my legs. My mind is not in a good place right now, anxiety and panic.
 

lisa g

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You need to step back and take a deep breath. Fueling the panic and anxiety is not going to change things. Believe me we have all been in the place your in (limbo). Don't get yourself worked up over what's not in your control at this point. Your doctor can come back and say no als and you've wasted your time obsessing. I'm praying you get a good outcome.
 

Nikki J

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Where is the summary / conclusion? It is difficult for me to see the bottom half clearly but the tibilias pattern looks nothing like an ALS pattern to me. These kinds of things often seem to come and go emgs as mild injuries repair themselves
 
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