Difference between fasciculation/myotonia/fibrillations etc.

[aspen]

I'm not sure how to describe what's going on in my leg. I'm also pretty sure it doesn't belong under spasticity, but I'm not sure where else to put my question.

In a previous flare I had muscle spasms in my right leg only. This time around I have something else going on, initially right leg only, then some left leg; now it's equal. For about three weeks now, it's pretty much constant when I'm at rest. Had a difficult time getting to sleep last night b/c of it ... woke at 2:30 a.m. with it.

I initially thought they were pins and needles, but if I touch my calf/leg I can feel the jumps. I can see them on my calves but not in some of the other places. They are random, and occur in different places at the same time. It's concentrated in my calves, but can happen anywhere on my leg.

I'm trying to write up an update for my neuro, and I don't know what to call this.

Any ideas? Thank you.

[Kimba22]

Hi aspen,

I don't have an answer for you, but thought I'd bump your thread up in case someone else does.

Hopefully, your neuro will understand your description of what's going on w/ your leg, even if you don't have a "name" for it.

Best wishes,

[ENL2772]

It sounds like you are having fasciculations. I have them too, although my MS specialist insists they are unrelated. I have a few questions for you:

1.) do you have spinal lesions?
2.) Are they visible but not felt, felt but not visible, or a combination of both?
3.) Are they concentrated to your calves and only noticed at rest?

[aspen]

1. I've had one cspine done that was clear, but during this last flare was sent for repeat brain/cspine plus a tspine w/wo contrast. I don't see my neuro until end of the month, so I don't know if I have lesions yet.

2. They are felt and visible (I don't see all of them, but definitely in the calves and sometimes ankle and thigh as well). They are actually improving now ... this flare is on it's way OUT and even this is subsiding! They still are worse after I exercise, but it's nothing like it was in August and September - was pretty much constant then.

3. I do notice them more when I'm resting but I've felt little twinges even while walking -- only occasionally (they may be happening but I'm not noticing). They are worse at rest.

I know these are supposed to be lower motor neuron signs. Up until this started I had pyramidal tract dysfunction (upper motor neuron signs). I've also had some cranial nerve associated issues, which are peripheral nerves, which aren't supposed to be part of ms either.

Which is likely why I'm still in limbo ... .

Their onset and resolution basically tracked with my last flare (started two weeks later than my hemiparesis/pyramidal signs, and seem to be resolving about two weeks later as well.) it certainly seems like they might be part of ms or "whatever I have", even though they're not supposed to be.

[Fed Up]

I get those, all over my abdomen and in different places. Plus, in my calves, like you describe.

My doc, last Friday asked me specifically about Fasiculations and said that is what it is.

A new Rx too! fed

[22cyclist]

I am sorry you guys are suffering with these. The differences are:

1. Fasciculations: AKA "muscle twitch", is a small, local, involuntary muscle contraction and relaxation which may be visible under the skin. Fasciculations arise as a result of spontaneous depolarization of a lower motor neuron leading to the synchronous contraction of all the skeletal muscle fibers within a single motor unit. Fasciculations may be seen in healthy people.

2. Myotonia: Meaning "tension" is a symptom of a handful of neuromuscular disorders characterized by prolonged contraction of the skeletal muscles after voluntary contraction or electrical stimulation. Causes: 1. Myotonic muscular dystrophy 2. Myotonia Congenita 3. Paramyotonia Congenita.

3. Fibrillations: Mostly found in the heart, they can also be found in the skeletal muscles. It occurs with individual muscle fibers. This happens when muscle fibers lose contact with their innervating axon producing a spontaneous action potential, "fibrillation potential" that results in the muscle fiber's contraction. These contractions are not visible under the skin and are detectable through needle electromyography (EMG) and ultrasound. Fibrillations are not seen in healthy people, and are a sign of lower motor neuron lesions.

Those are the differences. Your physician will tell you which you have. I doubt you have myotonia as most causes are congenital.

Hope you feel better soon.

Take care
Lisa
Moderation Team

[Fed Up]

Thank You 22Cyclist; I'll definitely read this to my doc. It appears I have #1 and #2.

22Cyclist; I started Flexoril yesterday, so you think that will help it? mine have been daily lately.

I so appreciate your help, more than you know! YOU ARE VERY APPRECIATED; NEVER DOUBT THAT! jpt

[aspen]

Thank you so much, Lisa .

Mine are definitely no. 1. Unfortunately they did not completely go away ... they were infrequent for a while and have picked up again end of October. No idea why.

They are not particularly bothersome so still haven't checked with doctor. Neuro knows but since he didn't actually see them when I was there ....

I appreciate your assistance!

[aspen]

Update. After they disappeared for a couple of months, the twitching started up in earnest again about two weeks ago, and once again were messing with sleep.

A few nights ago they were big -- muscle pulling in making dents on my calves. By the time I found the camera, it had calmed down a little but I took some video -- took it into the doctor yesterday and he said definitely fasciculations, and that I should take the video to neuro as well in May. Seems a little obsessive, but neuro did say in his report that "I" called them fascs (based on this thread and wiki lol), so I guess he would appreciate confirmation.

It's bad this go around ... they are everywhere and 24/7. Mildly annoying during the day (since it's not shorts weather!) but my legs bounce in protest/reflex? if I'm sitting or lying down. Right now in feet, calves, shins, hamstrings, glutes ... also in trunk, arms and my face occasionally.

Family doctor prescribed gabapentin which I took last night ... they calmed down over about 40 minutes or so, and didn't start up again for 8 hours. I'm hoping this continues. Still wondering "why" though .

Thanks for your help, everyone .

[minnie76]

Hi Aspen,

Would love to know what your docs think this is happening, I'm still in limbo, my neuro told me that my muscle twitches was "just my body talking" I almost responded by " well what the F is it saying then"

When ever I see my Rheumy she has me right down my symptoms...she then circles the ones that peak her interest. She circled spasms, and asked where I get them...I told her everywhere...sometimes the same muscle twitches over 30 times!!! They are mostly visible, I've even had them on the soles of my feet!

I've also been woken a few times when it feels like my entire upper leg jolts or shakes it feels like one very big spasm then it goes away.

Has anyone ever felt that?

My EMG and Nerve Conduction Test came back normal.

Aspen I know you're in the west part of the GTA...I'm going to see a NeuroOpthalmologist on Feb 6 at the ST joseph's center in Hamilton..have you ever seen anyone there?

Thanks,
Minnie76

[aspen]

I almost responded by " well what the F is it saying then" ... sometimes the same muscle twitches over 30 times!!! They are mostly visible, I've even had them on the soles of my feet!

I've also been woken a few times when it feels like my entire upper leg jolts or shakes it feels like one very big spasm then it goes away.

Has anyone ever felt that?

Minnie, I laughed at your response to the body talking. My thought -- why has my body been silent for 48.5 years then??? This go around I have twitches mostly in glutes and below (including small muscles in feet), but also in arms, trunk, lips and left face.

Jolting awake with leg movement? All the time. And yes, leg movement was one of the notations on my sleep study. It CAN be caused by sleep apnea so it's probably worthwhile to have that done. I too jerk awake, legs alone, or legs, arms and trunk involved -- can be a response to a non-breathing episode. Mine move even though the apnea is now controlled, so doctor is comfortable with blaming the fascs. Which makes sense because I also have the jolts if I'm fascing while sitting in a recliner.

I've now taken gabapentin for two nights, and it has worked well ... only 100 mg at this point, and I have 7 fasc-free hours at night. I get bad side effects with gaba at higher levels so I"m hoping this continues to work. Again, I wouldn't medicate until you know it's not related to sleep apnea ... especially any sort of sedative sleep med. Dangerous.

Sorting through all these symptoms and looking for other causes is a painfully slow process Fascs aren't supposed to be part of ms (I'm in limbo too); others here also have them though, and mine always overlap with a period of right side weakness. Of course, they can be caused by anxiety as well, or can be because of BFS, so who knows.

Aspen I know you're in the west part of the GTA...I'm going to see a NeuroOpthalmologist on Feb 6 at the ST joseph's center in Hamilton..have you ever seen anyone there?

Minnie, I'm actually a couple of hours east of Toronto, but I've heard some good things about a neurologist at St. Joseph's. Also good things about the ms clinic at Mac. Unfamiliar with neuropthamologists though, sorry. Do you have ON?

How long have you been in limbo? So sorry ... it really is frustrating.

[minnie76]

Hi,

Muscle twitches come and go, silent for a few weeks...but when they start up again they're here for a month or so.

So sorry for some strange reason I assumed you where in the West end.

Limbo since Jan 2012. It all started with tinnisitus that lasted a few months...fam doc sent me for an MRI thinking perhaps a tumour...but findings where "excessive demyelination for someone of her age group" was 35 at the time.

I've noticed that stress can contribute,but I've really been taking it easy, things are still coming up, I now have a positive ANA (high positive with homogeneous and speckled pattern)

I don't know yet if I've had ON, in October I woke up with pain in my right eye, and by the evening my vision went foggy. My right pupil was more dilated too during this "episode" . It only lasted a day, but my colours are still off...getting better but still of.

Reds not as sharp, green looks different, blacks look dark grey.

Went to my optometrist she said that she had previously noticed that my right eye was more "sluggish" then the left.

Last year a neuro at the hospital also noticed it and said to go check it out with an opthamologist but I never did.

I've also had severe pain in my right eye about 3 times in the past, where if I moved my eye it was very painful, couldn't really watch tv. I never looked into it cause it only lasted 3-4 days ( prior to me being in limbo)
And I just chucked it to an eye strain.

My current neuro (MS specialist) said I should go do a sleep study...I told him I'm so tired that I don't have a problem with sleeping...I do wake up because my hands fall asleep..but other then that I think I'm ok. Hubby has a C-pap machine though...I call him Darth Vader!!!

How are things progressing with you? Have you had an LP?
Have you ever had ON?

I have TN...do you have that too?

Do you think I should go for a sleep study? My muscle jolting doesn't happen very often...but when it does it feels like a big part of my body jolts.

Muscle twitching is way more often! My husband felt it when he was lying on my shoulder!

Are you getting closer to any diagnosis?

Minnie76

[aspen]

My eyes are fine now; I did have some visual disturbances for a few weeks in February-March (couldn't read, look at computer, blurry left eye plus shooting pain in it when I looked at certain designs, plus pallinopsia), but VEPS came back negative in August so no ON. Yes, I had trigeminal neuralgia January - March and it might have been from that, or from meds ... who knows? Do you have TN now? SO SORRY .

Even if you THINK you have no trouble sleeping ... that doesn't mean you are sleeping well. Not everyone is woken up by non-breathing episodes. I spoke to someone local this week and she slept "fine" -- had an AHI of 62!!! (basically she was breathing 30 seconds, then stopped 30 seconds, all night!). So yes, I would do the sleep study for sure. Whether it's good or bad, it's more info for dx. "so tired" can be ms .. but it can also be quality of regular sleep so that's probably why your neuro suggested it.

I haven't had an LP ... my neuro said he felt it was the wrong time (??). I see him again in May. So, firmly in limbo . Who is your neuro? If you're interested, you can email me ... addy is on my home page .. rather than posting here.

[Mørphi]

This is interesting! My I description thus far of 22cyclist's #1 is "bubble wrap spasms". I've described them as though I'm made of bubble wrap and the bubbles are popping all by themselves and all over. It would also seem that I have the #2 type also. On a few occasions while being hooked up to a TENS unit it has felt that the machine broke and wouldn't let go of me. The last one was at Friday's physical terrorist session. The left side electrode was placed between my spine and my shoulder blade. After lying there for a few minutes the muscle group painfully tensed and moved upward like a rolling wave, into my neck and then my face. Feeling like I was being choked out and beat red, the therapist saw me cringing in pain and pulled the plug. I suppose I'll ask to omit this from my sessions

[aspen]

Morphi, that's interesting ... I can't have TENS on my right leg at all. It goes completely stiff, like a tree trunk. Takes hours to wear off. No one can explain it.

I've been referred for an EMG by neuro since the fascs aren't going anywhere. Just rule-out stuff likely -- I'm pretty certain it's just something benign. So is the neuro.