Fasiculations and elevated CK

[BEH]

I have had fasciculation's all over my body, including my eyelids everyday for about a month. My CPK is slightly elevated at 250. My legs are feeling very fatigued after exercising, and I've been having to cut my workouts short because of this. I have had jerking of my leg. My feet feel like they are about to fall asleep. I saw a neurologist, and exam was normal without atrophy or loss of strength. I am having an EMG next week. I do not have any weakness, but I do have muscle fatigue. If I walk up the steps it feels like I have ten pounds of weight on each leg. I have random pin pricks, but they are occasional. The fasciculation's are constant. Today my eyes are especially twitchy. Although I do not have weakness, is it possible this is the beginning of symptoms, and weakness will follow? I am very concerned that this is the onset of ALS. I am a 54 yo woman in good health. Labs so far have been ESR, CRP, ADOLASE, ANA, all which were normal. Some of my fasciculation's are not strong, and I can feel but not see them. Some are very strong and have recorded them. Has anyone else had a similar beginning experience with ALS?

 

[ShiftKicker]

Hello-

The pinned Read Before Posting post provides answers for many of the question that bring people here. Sensory issues like burning, pin pricks or a feeling of heaviness, are not at all related to ALS. It's not clear what the trouble might be, but your clinical exam not turning up motor deficits and the sensory issues you are experiencing point toward something else. Hopefully your EMG next week will provide further reassurance and/or a direction for your neurologist to continue searching.

Please take care

 

[BEH]

Thank you for your response. I read today that severe muscle cramping all over can be an early sign of ASL, along with fasciculation's. I have strange cramping all over my body. Could it be that it is early and this is the beginning of symptoms? I read that those are two of the main symptoms.

 

[Nikki J]

As I posted on another recent thread there are guidelines for non specialists developed by a panel of leading Als. specialists who all see patients regularly in ALS clinics. They give lists of concerning symptoms that warrant urgent evaluation for ALS ( all were specific types of clinical weakness). Supporting things like being from a FALS family that increase urgency They also had a list of things that point away from ALS. Cramps and or fasciculations without clinical weakness was on that list. I don’t know what you read but this was the combined opinion of a group of esteemed specialist -16 I believe- it wouldn’t have made the list if they didn’t all agree

 

[BEH]

I had my EMG yesterday, and it was normal. My Neurologist thinks it may be cramp-fasciculation syndrome. I read in a Neurology journal that fasciculation's and cramping in two documented cases eventually led to the dx of ALS. They both developed weakness in the following year. So, basically, I'm holding on to the possibility that it's not completely not possible. I have some pain in my right hand which I think is joint pain. They only did the EMG/Nerve test on my left. Would it still detect if it's in my right hand?

 

[Nikki J]

Pain is not a presenting ALS symptom. And yes your emg was sufficient. If your hand pain is significant see your gp. Otherwise take your result and run. And swear off Mr Google

 

[BEH]

Thank you so much for the time you have taken to respond to my posts. I appreciate you, and all of your knowledge! Do you think it is possible that fasciculation's and cramps could potentially be early early stages of ALS?

 

[Nikki J]

If you have a normal emg and your neurologist found nothing of concern to them on exam then you do not have ALS. Could you develop ALS at some point ? Of course. No one on this earth is immune. But you are far more likely by a couple of hundred times to get cancer or die of cardiovascular disease There is no point in worrying. Concentrate on living a healthy life

 

[BEH]

Thank you, again. I have been researching this fasciculation cramping syndrome, and came across some information that said with ALS the fasciculation's are more likely to occur simultaneously than with BFC. Today I have had crazy fasciculation's several places at the same time at once. They are really strong, and similar to the videos people with ALS post. I watched a you tube video today of someone with ALS that was initially diagnosed with BFCS who started with fasciculation's and cramping. Although he said he was having some balance issues as well. I seem to do okay, and then these strong fasciculation's start and continue all day and I get worried.

 

[ShiftKicker]

Hi there-

I don't think you are really doing yourself any favours continuing to research and focus on a disease you've been cleared of by the neurologist. If you have further questions about your specific symptoms, please make sure to address them with your doctor. They are in a better position to help you as they can see what you are talking about.

Hopefully you will be able to leave ALS behind and stop researching it so intensely now that the neurologist has provided you with a reason for your symptoms.

 

[BEH]

I apologize for posting again, but I have had some symptoms since my neurology appointment that I’m worried about.. My fasciculations have really been strong in my right upper arm and shoulder, along with muscle fatigue in that same area..My arm has been so fatigued when running the vacuum and cramping when writing on that same side. I’m trying not to use it because it is so fatigued. also have shoulder discomfort on that side as well.. My EMG was on the left side and now I’m concerned about the fatigue in my right arm. I’m trying to determine the difference between weakness and fatigue in a limb. Should I ask my neurologist to do an EMG on that area in my deltoid/shoulder?

 

[ShiftKicker]

I'm not sure if it's a good idea to tell your neuro what they should be testing for. A better approach, if you feel there is a change, is to let them know what has changed and let them guide the search. An insistence on focusing on, and performing diagnostic tests for a specific disease you have already been cleared of would mean a delay in figuring out what the problem actually is.

Looking back through your posts, your focus on ALS, to the exclusion of any other of the myriad causes for your symptoms is a giant red flag for health anxiety. You're not doing yourself any favours continuing to research ALS when you've been cleared already. Please speak with your doctor if you still have concerns, but this forum does not have the answers you are looking for and it's pretty clear the information and reassurance we've tried to provide you is not sufficient to reduce your anxiety.

I am closing this thread, please do not open another.