Tapping sensation

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prometheus

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Starting yesterday, I began to feel an odd sensation on my thigh. At first I thought my wife was tapping her fingers on my leg but then I realized that it was coming from my leg itself. It happened again this morning and I saw that it was having a sort of jumping movement. As if something were underneath my skin trying to get out. Kind of freaky. Is this a neurological symptom or unrelated?
 

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it sounds like it could be muscle twitchings,that does not mean it's als you can have benign twitchings in pls and other medical conditions so don't panick.
are you seeing a new neuro for further tests to rule everything out other than mnd?
i know you have had neuro exam but have they done mri,nvc,emg,blood tests?
it's only when exstensive tests(iv'e had the full 9yards including genetic) are ok they consider a mnd, even a diagnosed of which one can sometimes be tricky.
 

prometheus

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I've had several neurological exams by my neuro... probably close to 100 viles of blood drawn (I've been to a lot of tropical areas so they wanted to rule out tropical diseases). MRI, LP, nerve conduction, EEG, EMG.. so on and so forth. However, I have not had any genetic testing to my knowledge. They have asked if anyone in my family has had neurological conditions.

I am scheduled to see a movement specialist soon to confirm/rule out PD or PD+, but the meds they put me on for PD (Requp) did not work and I am in the process of weaning off it.

My neuro said something at the last visit about not knowing exactly what it is and that it may take a few years of following my symptoms and waiting for it to settle in to something. Is this normal?

Oh, and thanks for the explanation of the twitching. I didn't know what it was or whether it could be related or not.
 

olly

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as 1in million people get pls it's exstremly rare so most neuro's dont know much about it.
it's sounds like they may have ruled everything out, nows the hard part getting a neuro to diagnosed mnd and which one. from what you have told me you have all/mainly umn signs /symptoms so its possible it may be pls,but.....................it can take a number of years to get definate diagnosed so be warned. ive gone 8yrs and have a diagnosed of mnd but no definate pls/als diagnosed. that is why im going to mnd clinic next week for emg to sort out some lmn issues i have
 

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Wow... 8 years! That would drive me batty. Not that I'd have a choice, but it would drive me batty. Although, in some ways I suppose that it is what it is regardless of whether it has a diagnosed or not. As long as they can stop the pain I'd be very happy. I've heard that MS can show up on an MRI months after a clean MRI. Maybe I'd be luck enough to have something less threatening than MND (?)
 

Whitsend

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I had the genetic test done for HSP. Came back negative. Just giving you a heads up on it though...Two, count 'em, two vials of blood. Price tag? $5,000. If your insurance won't cover it (mine did), you probably won't be getting that genitic testing done.
 

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Those Twitches or taps are called Fasiculations Even normal folks get em . Ever had your eye twitch all by itself .I think these are false firing of the nerves . The nerve tells the muscle to move even though no command signal was there . kind of like Parkinsons ,they have Tremors but all the time. Kind of like Cramps in the legs .The muscle is getting a signal to contract but never gets a signal to let go ,so it keeps contracting until i cramps the muscle . Fasics are a series of contract and let go signals only in rapid succession . Speaking of which my wife heard on the radio the other day of a game that you wear a helmet
and the brain signals work the game anyone heard of this ? Geo
 

hopingforcure

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Good explanation Geo... How many of you PLS's get fasics? Seems they say they are not a symptom of PLS, but many get them anyway. I think the way Geo explains it makes sense, and that would make sense why PLS'sers could get Fasiculations.
 

prometheus

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Thanks Geo- that does help. I've seen that word tossed around but to be honest I never read anything on it because I didn't want to attempt to sound out the word... I know.. lazy. I'll read more on it now that I understand it. And really... it wasn't all that hard to pronounce once I tried!
 

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i have only had fassiculations since iv'e been ill with this desease, i only started getting them in my face and jaw since my bulbar symptoms started. so my fassics are related to my illness and not a coincidence. how do you explain that!?
 

hopingforcure

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Not a isolated event at all, they are surely caused by irritated muscles and nerves, and have everything to do with the disease, that is assured.
 

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So I also just read that it they can be due to environmental factors such as stress or even caffeine intake. Could it be that the stress caused by the potential of having a life ending illness can cause these and that it may not always be a symptom of ALS? I mean, just the thought of ALS is enough to evoke twitching. If this is really the case, then how does one differentiate between true fassiculations and ones initiated by stress?
 

hopingforcure

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MALIGNENT fasiculations appear the same as stress, normal twitching, when they are malignent they show up on the emg as reinervation and denervation, postive sharp waves, and weakness, showing atrophy, or inability to initiate the muscle on emg.
If you have them in PLS, they should not cause such findings.
 

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Used to get the fasiculations in my eye lid like many 'normal' people. Then started noticing I was occassionally getting it in the arm, leg, buttucks, back, foot, wherever. Didn't really bother me. After I acquired the drop foot, slow shuffling gait, tripping, I noticed the fasiculations were much more common and in more places. It pretty much got to the point that there was almost always some kind of twitching going on somewhere. However, lately they've subsided some. I'd say in the last 6 months, only getting them occassionally again. (That equates to a short set, a couple times a day.) Doesn't really bother me one way or the other, but it sure would be nice if the drop foot, slow shuffling gait, and tripping would go away.
 

Geo

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This all goes back to Misfiring Neurons .Meaning their firing when they shouldnt and not firing when they should Theres a 100 Billlion in everybody Hard to imagine .Kind of like a chain but if one link in the chain is bad or several nothing can get through . This all causes us to be Clumsey and uncoordinated . If i sit for a while when i get back up i have to watch out i dont move too fas or i'll fall . Geo
 
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