Fasciculations

Hi Elmo,

My short answer to this from diagnosis of 7 years is that it could probably be classified as both, in way…or the motor resulting in sensory more specifically.

In short, fasciculations are involuntary muscle twitchings or contraction of contiguous groups of muscle fibers. They are by definition, non-painful and rapid muscle twitching seen with peripheral motor nerve injury.

However as a result of this it would make sense to have sensory issues also.

As you have noticed, this can happen all over, or more localized and varies in location, depending on cause and the person.
It is seen with [U]peripheral motor nerve injury[/U] typically caused by damage to the lower motor neurons (not upper).

So, while it’s a motor neuropathy, I think it can result in sensory symptoms as a result of what I described above too.

I know if I have fasciculations, I often feel sensory symptom at the same times, such as numbness &/or tingling. I think it just depends on the person. That doesn’t mean is caused by a sensory factor, but results in a sensory component. So, I think a motor neuropathy will undoubtedly cause sensory symptoms also, I don’t think a sensory neuropathy can cause fasciculations on their own.

Not sure how clear that is, but I hope it helps.

FWIW, when I first presented (and was NOT diagnosed that time). I woke up one morning with my left upper extremity flaccid from the shoulder all the way down to the fingertips. I could not move my arm from the shoulder at all.

It was totally paralyzed (radial nerve palsy), I had NO sensation of numbness or tingling at all. After an hour or so progressed, my fingers on that hand would involuntarily contract and curl up into my palm. (They would fasciculate also). I remember trying to unfold them with my other hands fingers to straighten them to try and dial the phone. They were very forceful, tight and stiff and I had to use force (with my other hand) to get them out of the palm of my hand to dial the phone.

Later over the day-couple hours (& forever), I would have pins and needles type feeling, tingling and numbness at various times — just random happenings. When I left the hospital the next day, I had a forearm and wrist splint to give me some support and at least make the tips of my fingers functional. I had 3 follow ups with the neurologist after being discharged from the hospital and he was unable to diagnose it. (I was also in hand PT for many months).

It was 8-9 months before I had full function of my arm/hand/fingers. I still had occasional sensory sensations even after that. Now I ahve them quite frequently. Within about 6 months the identical thing happened to my other upper extremity. I was diagnosed with CIDP (unofficially) after a 3 month wait to see the best neurologist in town. It became official after we ran the necessary diagnostic tests, but my Dr knew what I had by history, symptoms and presentation at my first visit.

I started IVIG and that extremity was better after about 4 months of it. I still continue IVIG now (almost 7 years later), as I have failed 3 immunosuppressants several times.

Not sure if that totally answers your question or not, but I hope it gives you some insight or ability to investigate further.

I wasn’t clear by your post in the other thread (the only one I have read) that you have not yet been diagnosed with anything. What are your symptoms and where do you stand with diagnosis? (or just point me to the thread).

I HTH some, I must run as I am on my way to IVIG now!

JD (Sorry, but I don’t have time to proof read this!) Feel free to PM me if you want also.

[I]Elmo, the twitching/jerking while you are at rest, either in your recliner in front of the TV or all comfy in your bed, could well be a matter of RLS — restless leg syndrome. Leg is a misnomer ‘cuz it can involve legs, arms, torso … certainly did in my case. Neurontin/gabapentin is the ‘drug of choice’ pretty much. Which is fine ‘cuz that’s also the ‘drug of choice’ when dealing with CIDP. Turns out I have both — isn’t that just too too handy, tho’.[/I] 😀

[QUOTE=Rocky36][I]Elmo, the twitching/jerking while you are at rest, either in your recliner in front of the TV or all comfy in your bed, could well be a matter of RLS — restless leg syndrome. Leg is a misnomer ‘cuz it can involve legs, arms, torso … certainly did in my case. Neurontin/gabapentin is the ‘drug of choice’ pretty much. Which is fine ‘cuz that’s also the ‘drug of choice’ when dealing with CIDP. Turns out I have both — isn’t that just too too handy, tho’.[/I] :D[/QUOTE]

Just wondering who told you “Neurontin was drug of choice when dealing with CIDP”, and what is it supposed to be the choice for doing what?

Thanks

[QUOTE=Elmo]Hi Rocky! How you doing? Haven’t “seen” you around much lately…

It was thought that I might have some RLS a few years ago, and during that time they tried Requip, which as I understood it, was the “drug of choice” at that time.

[COLOR=”Navy”][I]OMG, Elmo, I’d forgotten all about Requip. My regular doc had me try that several years ago. Couldn’t hack it. Nasty stuff.[/I][/COLOR]

I would be surprised if it were, to be honest, as this all has just started within the past two months. It would be an incredible coincidence.

[COLOR=”Navy”][I]Good point.[/I][/COLOR]

My logic behind that is based on thinking about when I’ve over-used muscles in the past (in my pre-neuropathy days)…often I’d get “shaky” because I’d worked my muscles too much. I’m wondering if it’s not the same sort of thing, but on a different level.

[COLOR=”Navy”][I]Could be. I do know that after I completed the 2nd of 2 10-mile hikes in the mountains in Norway, I had exactly that reaction. Actually, my thigh muscles shut down altogether … couldn’t even climb the steps into the minivan that was to take us back to our rendevous spot. I asked if that could’ve been the start of my CIDP, but the neuro said “no”. [/I][/COLOR]

Who knows…all I know is my hands and arms are tired, and so am I, so I’m gonna stop typing and go to bed! ‘Night, all!

Elmo[/QUOTE]

[COLOR=”Navy”][I]Hope you had a good night. And are having one super good morning!

Rocky[/I][/COLOR]

I’ve had the tremors and fasciculations since I came down with this lovely little beast almost 3 years ago. I also have fun little cramps in my hands where my fingers draw up almost into claws and literally the only way I can straighten them is with either the other hand or if it’s both hands I have to press them against a hard surface. I have noticed that they have gotten worse as I have been trying to ween off of the steroids, and that they also get worse if I overuse my hands or if I overdo it during the day. The last time I saw my neuro. we talked about it and he seems to think that while my motor nerves have more or less healed the sensory nerves have permanent damage and that it was causing the lions share of it. He put me on neurontin and that has been a huge help, the only time they are real bad now is if I really overdo it.

a calcium depletion. Many of the meds we take for the pain are noted to either deplete calcium or to reduce the ability to asorb it. Further there can be a tendency to not asorb or us magnesium which helps the calcium work.
Try an increased dose of calcium that has magnesium + Vitamin D in it to reduce the ‘twitches’ [easier to spell]. It doesn’t kick in right away, but usually within about 7-10 days you will find some improvement.
The nerves need that calcium too, to function well. Look up calcium and magnesium deficiencies + nerves and see what it all says. Very interesting stuff.
Hope this helps.

[QUOTE=homeagain]a calcium depletion. Many of the meds we take for the pain are noted to either deplete calcium or to reduce the ability to asorb it. Further there can be a tendency to not asorb or us magnesium which helps the calcium work. Try an increased dose of calcium that has magnesium + Vitamin D in it to reduce the ‘twitches’ [easier to spell]. It doesn’t kick in right away, but usually within about 7-10 days you will find some improvement. The nerves need that calcium too, to function well. Look up calcium and magnesium deficiencies + nerves and see what it all says. Very interesting stuff. Hope this helps.[/QUOTE]

[I]Didn’t help me, but a good suggestion. I’ve taken cal, mag, zinc + a separate D for years. Could be that held off the worst of the jerks and jolts for awhile — at least my RLS night-time demons — until the CA and CIDP kicked in, anyway. 🙂 [/I]

[QUOTE=kthiemann]I’ve had the tremors and fasciculations since I came down with this lovely little beast almost 3 years ago. The last time I saw my neuro. we talked about it and he seems to think that while my motor nerves have more or less healed the sensory nerves have permanent damage and that it was causing the lions share of it. He put me on neurontin and that has been a huge help, the only time they are real bad now is if I really overdo it.[/QUOTE]

[I]I’m trying to wean down the gabapentin. Am curious as to how little/much is needed to control the pinpricks and electrical jolts. In any case, I don’t expect the gabapentin to do away with the ripe grapes I have stuck on the ends of my feet. I do have side effects from the gabapentin, so as small a dose as possible is what I’m aiming for.[/I]

Elmo,

I too have suffered fasiculations over the years. In my case, it’s a sign the motor muscles are atrophying.

I just read in another post something to the effect of ‘you’ve gotta take charge of your case.’ This is absolutely true. When I read comments such as yours, “…I’ve been told by my last neuro that she thought my neuropathy was almost completely sensory…” it really drives home that point.

You need to know. Know what-

1. What are your emg/ncv results? Do they include motor as well as sensory blocks? Those are apparently easily distinguished by a neuromotor specialist.
Major teaching centers are a good start for a place to find one, so too, I suppose, are those places on the GBS/CIDP list I got in the mail today.

2. Have you had a spinal tap, blood test(s) and other tests to rule in and/or out other possibilities.

3. Nerve biopsy results. Last resort, in some cases, is a nerve biopsy. A common biopsy site is the sural nerve near the ankle. In my case it was the brachial complex in my right upper arm. And, no, they don’t dissect the whole thing.

When you can answer these questions you’ll have a much better grasp on your situation.

I was diagnosed with AIDP (GBS) in March of 2017. While going that experience I recalled having muscle twitches, tremors and fasciculations in my legs but the went away at least I thought so. I retired from my job in Law Enforcement in March of 2019.

Aside from having fatigue and tingling sensations from the knee down in both legs and the forearm to the tips of my fingers in both arms life appeared to be consistent and somewhat normal.

In August I enrolled in college to start a new career in the medical field.

I had not been to school in over 25 years and took 12 units to start off this new endeavor. One of the classes I took was beginning weight lifting.

Not long after starting I began to notice the muscle twitches. At first they were in infrequent and located in my calf muscles. Then progressed into twitching all day and night in both legs.

I backed off on the exercise and did what I could to maintain the grade in the class I wanted.

In October of 2019 I saw my PCP who directed me to supplement with vitamin B complex and sent me to Neurologist. In January I was seen by the Neurologist who ran labs and did an EMG/NCS. The labs came back with elevated CK levels at 373 and the study showed I had perineal nerve Damage (meaning no response)in my left leg and various slow responses over all. The Neurologist ruled out MG, Parkinson’s and ALS.

From there I was sent to a Rheumatoid specialist who ran more labs. All labs came back normal with a CK still elevated by not as high.

I was then sent to a Neuromuscular Specialist who initialLy diagnosed me with BFS but at the end of the appointment, she was really taken with size and shape of my ankles and the muscle atrophy I had in my left Calf and my Right Quadriceps as a result of the effects of GBS.

So she decided to run more tests to include CT scan, MRI, labs, and another EMG/NCS. Most results came back negative except for the CK, B6 and EMG/NCS. The CK was still elevated at 258 and my Vitamin B6 was at 167. Additional she stated the EMG/NCS came back abnormal from the last one done in January 2020.

I had asked her if the months of supplementation of B vitamins could have cause an effect like this given my B6 levels were so high, she stated, “No” without considering what I was saying. She seemed so focused on diagnosing me with ALS.

So I researched on my own and found that toxic levels of Vitamin B6 can mimic symptoms I was having and Could cause the symptoms I was experiencing like muscle twitches, fatigue and brain fog!

I am scheduled to see another doctor in October 2020 to receive a second opinion.

My question to everyone is, has anyone experienced muscle twitching (Fasciculations)during GBS and months after?

Hi Justin,

If you are still experiencing GBS-like symptoms a few years after initial diagnosis, it is likely CIDP or one of its variants. RGBS doesn’t last much more than a year.

1…Leg twitching: I am a wheelchair bound paraplegic since 2008 thanks to CIDP. The CIDP gave me a bonus form of restless leg syndrome. It’s a twitching, fasciculations, and squirmy feeling in my legs. It is not painful, but extremely irritating. It can keep me from sleeping at times. My neuro had me on Requip (Ropinirole) for my RLS but it didn’t help me and I was experiencing some of the side effects from that drug, so I went off it.

What I found that works for me is a low cost over-the-counter homeopathic item called “Restless Legs Relief” from Magnilife. This works wonders for my RLS symptoms and usually starts working in about 30 minutes after taking it. There are always some that would say this is not a medicine. But, as far as I’m concerned, if it helps remove and/or reduce RLS discomfort it IS a medicine of sorts. I take it daily and it has worked consistently for me for a few years now.

2…Vitamin B: Please see the following forum thread –

Can CIDP Cause HIGH Vitamin B-12 Value

3…Elevated CK: You may be able to lower the level naturally. See the following link –
https://www.healthline.com/health/how-to-lower-creatinine