Twitching update

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chris_uk

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i all

As you will all know i have been twitching for 7 months now non stop in the calfs....here is the latest video of my calfs twitching away...now this is proper twitching I seriously doubt that its possible to twitch more than this !

YouTube- 2009 03150001
 

Al

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Yup, that looks like fasciculations. Now, what is causing them is a whole different story.
AL.
 

chris_uk

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yea and it scares me stiff to think of what it could be
 

hopingforcure

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Could be lot's of things yet, maybe spinal problems? at the least the doc can see them. huh.. I know how annoying and troublesome they feel, but keep hope, could be from a ton of things, many benign...
 

wright

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If you have had twitching like that for seven months and it was due to ALS, you would more than likely have profound weakness and atrophy.

I'm sure there will be a lot of thankful, nervous people on this board, because they can now see that someone can have your type of twitching and it not be ALS. For those of you looking at that video . . . Chris has been thoroughly checked-out by a neuro (that would include a clean EMG) and has been told he doesn't have ALS. He for some reason, just won't believe it . . . because he for some reason thinks the only reason you have muscle twitches is because you have ALS. If that were the case, ALS would be pretty damn easy to diagnose, now wouldn't it.

Your good deed for the day, Chris. Bravo!
 

glenn gavanaugh

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Wright:

I'm waiting for my chance at an EMG (with the way things are going it could be a month from now... I know others have waited longer, so I'm not going to whine over it...), but I've also been told by a Neuro that I don't have ALS. She's a headache specialist, who has only seen 2 people in her life with ALS. She conducted a very hasty exam (I'm not knocking her in general, she seems like she's a nice doctor... but her skepticism in me having MND at my age, clearly led her to rush thru stuff...)
I have assymetrical atrophy, weakness (especially on my good side, where the problems started to develop), fasciculations, cramps... and some throat/mouth problems (which either are/are not related, I don't know - all I can say is they developed after the initial weakness/fascic's.).
*my GP noted the atrophy before I did, this was a while ago. The spasticity has increased quite a bit. Anyhow...

Would You Think That If I Had ALS, She (being a Neuro) Would Notice Something, Anything (even though she really has little experience with MND)?

I'm asking you this because you seem pretty knowledgable about the subject. And I want to put my mind at partial rest (if that's possible?) until I get this EMG. Saying that, I'd still love a straight answer, whether it be positive OR negative, or a wee bit of both.

Thanks a lot

P.S. - I Apologize If I Sound Like a Broken Record...but your opinion would be much appreciated.
 

chris_uk

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If you have had twitching like that for seven months and it was due to ALS, you would more than likely have profound weakness and atrophy.

I'm sure there will be a lot of thankful, nervous people on this board, because they can now see that someone can have your type of twitching and it not be ALS. For those of you looking at that video . . . Chris has been thoroughly checked-out by a neuro (that would include a clean EMG) and has been told he doesn't have ALS. He for some reason, just won't believe it . . . because he for some reason thinks the only reason you have muscle twitches is because you have ALS. If that were the case, ALS would be pretty damn easy to diagnose, now wouldn't it.

Your good deed for the day, Chris. Bravo!

Wright i really value your opinion and always have but can you please not knock me over this? i may be over reacting but what i am feeling and seeing is still very real, and i am sorry i worry over this, thats who i am.

Chris
 

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HI Glenn,
My husband's first neurologist thought he had Carpal Tunnel, and then when hubby returned to with major atrophy of the thenar muscle and foot drop he did not know what hubby had. At the neuromuscular disease centre, he was diagnosed on the first visit--pending his response to IVIG. Hubby as assymetric weakness as well.
And Chris, my husband has the same type of fasciculations in his affected arm, and he does not have ALS but CIDP Madsam.
Laurel
 

hopingforcure

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Laurel,
thank you for giving Chris other options for fasiculations, and your post only help's point towards this, thanks for the response.
 

glenn gavanaugh

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I noticed stiffness and weakness on the one side of my neck a while back. like there's a knot in it too. when i push in with my finger(s), the difference in muscle tone between the two sides is astonishing (you can even see it). when I smile wide to the one side, nothing really stands out, when I smile wide to the affected side, it's like a bone or a tendon attached to the bottom of the neck and shoulder (?) is sticking way out, it looks horrible, and you can actually grab it, it makes me squirm just to do it - what is going on? It's so uncomfortable to for me to turn my head to the one side (to the opposite side), it feels like I'm stretching the affected side, it's so tight... I noticed this a while back, but it's getting worse. yet I don't recall fascic's in my neck. and when I flex my buttocks' (I hope this isn't t.m.i., but...), my one side has like a huge amount missing, it's like part of it is cut off - I noticed a boneyness to this area when I was on the stationary bike at the gym way back in August - It was extremely uncomfortable for me to be on the bike, never had before... now that makes sense... there's a lot less musle on that side when flexed...). it's just stuff like this that is driving me mad. sorry, I had to vent! I should have shown this stuff to the Neuro, but everything happened so fast, and her saying "No ALS" took me off guard and made me extremely elated for the moment, and I let everything else slide...

and yeah Laurel thanks for the response. Glad to know things worked out for you and your husband! I hope the same for all in this position. it's maddening, really.
(I clearly went to the Neuro too soon. Now everyone (family, friends) think I'm insane. My Mother, "get on with your life... we don't want to hear anymore excuses" - it makes me ill with anxiety and depression to know that something is really wrong, yet I have to wait so long just for this EMG, I have to depend on my Mom to drive me to it, and if it's all the way in Ottawa she probably won't want to as she thinks that b/c the Neuro said "No ALS" it's the end of story, not realizing how important this test is for me... I don't want to do anything in life until I get this EMG, even if it comes back negative at least I can prove to myself and people close to me that there's something wrong, and work from there. ) again, I'm sorry for this rant.
 

wright

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Chris

I have tried the kind compassionate approach with you and that didn't work . . . the in your face approach and that didn't work. I thought maybe a little sarcasm might be in order. I guess that didn't work, huh. Many of us are trying to help you but you just don't seem to be receptive to it at all. You are ruining your life, for no good reason. You have been evaluated by a specialist (including a thorough, clean EMG) and given the all clear, but you persist with this nonsense. What more do you want and need?

I apologize for having offended you but I simply don't know what else to do. I wish you peace.
 

chris_uk

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Wright please dont take what i said the wrong way, not only do i value your opinion as most do on here, i really like you as a person. You give up so much of your time for everyone on here , and i for one will always be thankful of what you give to this forum.

I could have privately pm'd you this message but i wanted to openly tell you thanks for all you give.

I know i have been told i dont have ALS, but when you twitch like i do its impossible to not let doubts enter your head, well at least it is for me.

i always remember my EMG and when they first stuck the needle in my leg and it made a noise that sounded like "rain drops hitting a tin roof" and i had been told and read that this was a bad sign, i asked if this was normal and the tech doing the EMG said no, but then said that its not MND. However every where i read since says that this sound in an EMG is never a good sign.

So this is always in my head and you have all seen how much i twitch so i really do apologize if i have offended anyone or got on anyones nerves over the past 7 months.

It was never my intention to do this at all, and again Wright i am internally grateful for you advice and time, and once again i think your a great person.

Chris
 

wright

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Chris, I wasn't offended by a thing you said. I also thank you for the kind words. I certainly feel the same about you.

It doesn't surprise me that your EMG had the "rain drop" sounds, given all of the twitching that you have; the sounds were coming from the twitches, twitches that have been determined to be benign by your neuro.

It appears that the words of a tech are trumping the words of your neuro. That neuro has extensive schooling and training, which is why you refer to your neuro as doctor. You didn't call the tech, doctor, because he/she is not qualified. The neuro is who diagnoses you . . . NOT the tech.

One other thing: a dirty EMG (not that your EMG was dirty, but I just want to raise a point) certainly doesn't mean ALS, especially when it's only in one single muscle (that isn't even close to El Eschorial criteria). A slipped disc, a compressed nerve (carpal tunnel syndrome for example), inflammed nerves, etc., etc., etc. all can cause a "dirty" EMG. Are you getting the picture here? Even if your EMG is dirty (and it wasn't), it doesn't mean you have ALS.

Nothing you have shared with us points towards ALS and more importantly, your neuro (not your EMG tech) told you that you don't have it. Please hang onto all of that and enjoy your life.
 

chris_uk

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Again thank you, i have the letter from my Neuro where he says that he wants to "reassure me as firmly has he can that i do not have MND" i guess i need to read that when i have these bad days.

Ps

I do love your posts where your being frank with people...and believe it or not, you may not think you have "gotten through to me" but i can tell you this...without your advice in the really bad days i would not have gotten through them i don't think.

Chris
 

codya13105

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i twitch like that in both thighs
 
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