EMG fibrillation, concerned

[Andersen007]

Hi Everyone,

first of all a big thanks to all of you who - despite all the circumstances - find the time and energy to help us out. I was hoping that the FAQ will give me enough relief so I dont have to post here, but after my EMG, it seems differently.

I am a 26 year old male without any remarkable family history (except my granddad having relatively young onset Parkinson - around 45 year old). I have been through a lot lately, including false positive HIV tests, mild splenomegaly, digestion issues. More or less all of these have been resolved spontanously (without any real explanation), and was just about to move on, when I noticed a persistent fasciculation on the inner side of my right feet, around a month ago. It was not unusual for me to have a bit of fasciculation from time to time, but this one was ON at rest for 20-30% of the time. I tried not to worry about it too much, and contributed it to the workout I had in the gymn, and in 10 days it gradually disappeared. However since then, I have fasciculation all over my body, except from my face - fortunately, with much lower intensity than in my feet before, e.g. now every 10 minutes I have it on for a few seconds somewhere.

I went to a renown neurologist who performed a clinical exam without finding anything remarkable. He sent me to EMG for the peace of mind, which I attended on the 7th of September, really hoping that everything will be clear. This doctor also performed an unremarkable clinical exam and then both nerve conduction study and the needle EMG in all 4 limbs. At the end she commented that the exam was all good, and there is nothing of concern, and probably I just have a bit of "hyperexcitability" or so. However after when I saw the report, I saw that they picked up fibrillation in both my right (+) and left calf (+/-). I asked the neurologist who sent me, and he said he is happy with the result, no sign of peripheral nerve or spinal cord lesion, and he does not think the fibrillation is clinically significant. In any case he mentioned to return only in case things would get worse.

I am scared shitless that I actually have early-stage ALS, and that we are now just waiting for it to show itself in a more obvious way - and that I dont feel weakness just because I am not in that stage yet. I google-d fibrillation and found horrible things. I am attaching the report that I have, unfortunately is in Catalan, but happy to translate any part of it if needed. Also on the nerve conduction part I noticed differences, but again not sure if remarkable, as it was not commented upon.

I would be very grateful for your advice and opinion, whatever it may be.
Thanks!

 

[Nikki J]

Your doctor told you it was not worrisome. If you didn’t believe them I doubt you will believe me

1 there are a number of things that are seen in an ALS emg. Fibrillations are one thing but there are several other elements that need to be seen and you don’t have them
2. We have seen similar reports on this subforum and the people turned out fine. Often they sought another emg only to find that there were no fibrillations on that one
3 the ncs was apparently normal or you would have been told. If you did have abnormalities there though they would point away from ALS
4 Mr Google is a dreadful diagnostician. Trust the real doctor who studied many years and has likely practiced many more

 

[Andersen007]

Thank you Nikki for your reassuring words and your time. I have some more questions, although I am not sure if there is a universal answer for any of them. Please do feel free to ignore the stupid ones.
1) Would bilateral onset be a common pattern for ALS? Or is there normally a limb "leading" where the symptoms and findings are first present, and continue to be more prominent?
2) Recently more and more often, when I feel like I am fasciculating, and I put my hand there, I discover that in fact it follows the rhytm of my heartbeat. This seems to happen more or less in the same places as the real fasciculations. I am kind of confused what these could be. Does this remind you, or anyone else of anything?
3) The fact that my fasciculations are spread across my body and not focused on 1 place, makes it less concerning, right? Surely someone with ALS with diffuse fasciculations would have them on with a larger frequency, and not just a small twitch once in every 10-15 minutes? Or am I fooling myself?
4) During recent walks, I feel my feet getting tired way more easily. But I am guessing, based on having a clear EMG except the fibrillation, this must just be my imagination or anxiety, and couldn't possibly be a symptom.. right?

Once again thank you for your time and effort, and sending you and everyone else here a big virtual hug.

 

[ShiftKicker]

Hello-

1) Please read the Read Before Posting link- it explains much
2) That would be your pulse
3) Please read the above link
4) Tired feet do not mean ALS. And you are right, you have been cleared of ALS via EMG, so you will have to look elsewhere for reasons for your symptoms. Please keep working with your doctor.


Please take care.

 

[affected]

Please read the link Shiftkicker provided really carefully and allow that to answer everything you are asking.
You have received a really good result and need to embrace it.

 

[Andersen007]

Hi,

thank you for all the answers and for the sticky. They helped put my mind at ease and was trying to move on with my life.

A bit more than a week ago I noticed that my right hand is losing dexterity. I have more trouble grabbing small objects or rolling down toilet paper. I also have difficulty coordinating my typing. There is no pain associated with it but more like a slight weird feeling on the outer side of my forearm and the pinky's side of my hand. Sometimes not even that. And it is getting sore / uncomfortable quickly after typing. I was thinking that I could have injured it with weight lifting in the gymn, but there is little to no pain. The more I use it, the more difficult it gets, e.g. typing. I took it to a rheumatologist, who checked the hand itself with ultrasound. Said he sees some sort of mild diffuse inflammation and gave me inflammation reducers, that are not helping at all. He didn't check my forearm. Also e.g. when I make a fist, my pinky lands up into a somewhat different position than on my left hand. The fingers themselves feel tighter, when I want to replicate the same movements as in my left hand.

My EMG was clear as sky for my right hand less than a month ago. I did have the fib potential in my right leg. Is there any chance that just a few weeks after a clean EMG in the given limb I would start to lose dexterity due to denervation, or something like that?

Interestingly my legs seem to be doing well. A few times a day they do get a bit painful, but this is not associated with how much I use them. Perhaps I am just overly attentive to little things: if these would be cramps, surely I would recognize them due to restriction of movement, be able to touch something solid, or have it more like a sharp pain or so? Or can cramps just manifest as mild pain or soreness for a few minutes?

I also have a bunch of weird things going on. Occasional involuntary muscle movements, like a sudden finger move. Occasionally a weird uncomfortable feeling grows in the pinky's side of my right hand, almost like it wants to start shaking, that is relieved a bit if I move it. Right eyelid twitching 50% of the time. Body-wide occasional fascics. I understand the latter 2 are typical for anxiety.

Do you think I should go back to my neurologist? I totally realize I do have serious anxiety going on, but do you think there could also be something more serious as well, such as MND? I thought I moved on, but as soon as my hand started to act weird, my mind came back to the thought of having early-stage MND due to the EMG not being perfectly clean.

Thank you,

 

[ShiftKicker]

Yep, go back to the neurologist if you are still worried. The folk here really haven't been able to reassure you, so a person who has already examined you, provided you detailed information about your case specifically and who has your previous test results in hand might be able to provide you the reassurance you need.

 

[Andersen007]

Thank you ShiftKicker. Please do not think your words have been in vain - you all helped a lot, and I wouldnt be back if it weren't for these weird new things going on. I appreciate all the time invested, not just in this post but under everyone else's. This is probably the only place on the Internet where one can find reliable info about these topics.

Did something I have said raised a red flag for you from an MND standpoint to recommend going back to the doc? Or just concerned about my mental health?

 

[ShiftKicker]

Andersen, if you really read what the people have replied here, you wouldn't need to keep asking. I do not make any statements about your mental health. It is very clear you can't gain reassurance from the efforts of the people here, who can only repeat the same things over and over, so your best bet is to visit with your doctor and maybe be able to hear from them- no ALS.

I am closing this thread. Please find a way to move on from ALS- that may mean you need to address anxiety. The best person to speak to about this your primary medical care provider. Please take care.