Quick questions regarding EMG and clinical exam

[Rogercb]

First thank you for even taking the time to read my post. I will try to keep this post short and to the point.

I have been visiting here for 6 weeks or so reading the sticky many times and other posts many times that have helped me a lot.

I am 49, male, very healthy, active, very very healthy diet and plenty of hydration drinking pretty much only water, no caffeine, very little alcohol other than occasional wine. All blood work at PCP was great. No previous experience with health anxiety or any anxiety really until now.

2 months ago started having issues with legs and feet twitching. Some calf and toe cramping, toes move on their own at times, some mild weakness in the right arm.

Went to neurologist (local small community one that I could get into quickly). He did more blood work and ordered an EMG/NCS. My exam was "unremarkable" he said so I assume no weakness or reflex issues though he was super light on tests involving legs, only did knee reflex test on legs and more tests on arms.

This all brings me to a couple of quick questions... I am here asking questions because it seems everything has been over focused on arms and my legs were my biggest concern, so how confident can I be is my question.

Some info...

- EMG was normal (do not have access to it yet to post here). NCS showed radiculopathy from c6 nerve compression and carpal tunnel in both arms. MRI ordered. This explains my arm "weakness" most likely, we'll see what the MRI says but even the neuro said this would not explain any leg issues so that makes me less confident in the EMG given my leg issues.
- He only did my arms which surprised me given he was concerned about twitching and the twitching was mostly in my legs and feet
- The doctor doing the EMG said (because I asked at that point) that he had zero concerns of MND.
- The next day my neurologist said "You do not have ALS" when I asked.

So I left feeling relieved and I felt that I could put my ALS concerns behind me.

Then I started thinking (too much) about the lack of focus on legs in the exam and no EMG on the leg area, so my questions are:
1. If this were ALS, that would show some clear concerns on the EMG, but the EMG was done on my arms alone... so, can I really trust that I'm ok and no ALS since he only did arms? I know this is addressed in the "read before posting" but I'm honestly not confident on the answer in my case. I've only had symptoms for 3 months or so, so perhaps I'm just getting tested too early and things are not showing up in my arms yet and would only show if the legs were tested with EMG?

2. So my mind drifted to "what if this is UMN", the EMG could be good right? If there is something upper motor neuron only going on, the EMG would be a moot point right? The only reason my mind has gone here is because of stiffness in my calf and front lower leg muscles. It just feels tight a lot no matter if I rest it, stretch etc and wakes me up at night with toes moving. Could this be spasticity or the early stage of it?

I guess I'm just trying to determine if I need to go back for more tests and push to get legs looked at more to rule out MND / ALS or do the tests I have had sound sufficient? Thank you so much in advance!

 

[ShiftKicker]

Hi there-

UMN issues are more than just stiffness or tightness and can be assessed for in a clinical exam via reflex testing and a few other specific ways that are pretty standard in a basic neuro exam. Your neuro was looking for these signs during your exam and did not see anything. While you think he was light on the tests, he covered basics and did not turn up anything indicating UMN issues or signs that required further assessment.

So, you should trust the EMG and the physical neurological exam with regards to ALS. That doesn't mean there isn't something wrong, just that ALS/MND is not the issue. The tests he did were sufficient for clearing you of MND, but you would have to speak with the neuro about other possible causes.

Best

 

[Clearwater AL]

As I have written before but without the details. Neurologists are
are very observant while you are in the room with him/her.
What you do and how during the visit

Then of course, his/her physical contact with you during any
tests. Then the big test… the EMG which cleared you of ALS.
He backed that up by saying he had zero concern of you
having MND.

Got any idea how many others would have been so relieved to
hear that? Current PALS and CALS?

It is apparent you are dealing with a degree of Health Anxiety.

Like ShiftKicker suggested… work with your Neuro if you
decide to pursue this further. Whatever, I hope you come
to a resolution soon. But, at most let the burden worry of it
being ALS go.

 

[Rogercb]

Thank you both sincerely for your replies and your kindness. My post probably didn't even deserve to be read by you, much less responded to, but I appreciate it very much and the help it has provided.

 

[Rogercb]

Hi again. I just wanted to post my EMG and test result summary. The replies here last week really reassured me but today my neurologist referred me to a neuromuscular specialist. His initial diagnosis for the twitching was BFS, however he says he can't say with 95% confidence that's correct and would feel better getting a 2nd opinion. So I went from feeling really good to now freaking out again since everything he said before he seems to not feel too confident about. My EMG and some wording in the results also don't seem normal to me so I just wanted to post them and get your thoughts and if this might indicate MND at all. Seeing axonal loss and chronic axonal injury really jumped out at me and maybe that's why he's referring me for a second opinion? The mention of axonal loss was on the line about carpal tunnel but that last line in the results about axonal injury and reinnvervation was the part I was concerned with and not too sure of. I apologize for posting again as I really hate bothering anyone here. After this I will not post until I see the neuromuscular specialist and get any results from that. My sincerest thanks to you!

 

[KimT]

Your EMG doesn't support ALS. It would show fibrillations, positive sharp waves, and reduced recruitment in multiple areas.

If it helps you to see a neuromuscular doctor, do it. There are so many other issues that can explain what's going on and, maybe, the neuromuscular doctor can help you sort it out. In the meantime, I wouldn't worry about ALS.

 

[Rogercb]

Thank you Kim. I really appreciate it.

 

[Rogercb]

I'm extremely sorry to be back posting here again. My apologies in advance for being a burden. I have been referred to a neuromuscular specialist, however it will October before I can be seen. In the meantime, I have been doing ok (not great) in terms of being patient and accepting what my doctors have said and the feedback received here (which I very much appreciate).

I've been experiencing some troubling new symptoms that seem to be getting worse daily, which I wanted to ask about. I have had the feeling that my throat was closing or that something was squeezing it or pressing on it. I mostly dismissed it as I know the sticky addresses this and I figured it was globus. Maybe it is.

However, what is very concerning and has put my anxiety back into ultra high gear is swallowing issues now. The feeling in my throat is not constant. It will happen daily but usually not until afternoon or later in the day. When I feel it, my swallowing feels very labored and I have felt like I was going to choke with every sip of water. Earlier, I drank some water very slowly and nervously as this feeling was present and swallowing was on my mind... then I choked on it. It was like it was going down the wrong pipe. I tried a few more sips of water and choked each time, coughing to the point where my daughter asked me if I was ok.

So, I wanted to ask of this could be bulbar onset? I know this could be many things. Perhaps it is allergies, the pollen is very bad right now. Maybe it is just anxiety. But a voice in my head keeps telling me that's just wishful thinking and that it is something sinister especially since I actually did choke multiple times. Would/Could the feeling in my throat and choking come and go like this early on with ALS? Does bulbar ever start in the throat like this or is it always, or almost always, in the tongue?

I'm sorry to be back to ask this. I promised myself I would not post again and that I would stay off this site. I have failed pretty miserably on both of those promises and I feel embarrassed and ashamed. Thank you in advance for your input. I just feel in limbo now between one neurologist and the next which is months out and I'm really really scared.

 

[Rogercb]

Just responding back here to close the loop and to perhaps help future visitors here that may read this. My hope is that others in the rabbit hole of fear and anxiety can avoid it and not follow my path.

As you will see from my opening post, I had an EMG a few weeks ago on my left and right arm. The fact that my twitching was mostly in the legs led me to not trust the great result I got from that EMG. I had some relief for a bit, then my mind went to work again as I continued to obsess and read posts on this site non-stop. Then I started to think "They need to EMG my legs, then they'll see what I fear is happening". I continued to search and read posts here and I began to get more symptoms as I sank deeper into the rabbit hole of fear. I started to fear bulbar onset, not just limb onset, because my tongue has had intermittent pain and my throat has been super tight making it hard to swallow. Coming here daily and reading so many stories put me on a roller coaster... I'd go up as I felt reassured then right back down as I read something that sent me back into a panic...a terrible awful cycle to be in! I got the EMG of my legs yesterday. I don't have the results to post but my doctor called me this morning to say my EMG and NCS was all normal. It is time for me to take that, believe it and run! If I don't leave this site, I'll be back in the rabbit hole with bulbar fears. Actually, I've been in that rabbit hole already as my last post indicates, but I have a choice if I stay there or not. If you're here reading this and you're not diagnosed and you don't have true weakness and especially if you have a clean EMG... run now. The people here are great, but you don't need to be here. You are on an elevator of anxiety and it only goes down. But you can get off the elevator now. You can make that choice. Don't suffer from a disease you probably don't even have! You're not only hurting yourself, but you're hurting people close to you that you love. Don't do this to them. That's what I've been doing. It is time to stop! So, I'm going to see my doctor next week to discuss my throat issues and go from there.

Sorry for the long post and for bothering anyone here with any of my previous posts. My heart goes out to all the PALS and CALS here and I pray everyday there is a breakthrough to end this horrible disease! Thank you for the responses I received. It is not lost on me how difficult it is for many to get on here and respond with what you are going through.