Constant twitching

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Re: Constant twitching

Postby Yuliasir on January 6th, 2014, 7:09 am

Sorry if I put you in worries, did not had that intention of course. Anyway, having persistent pain in thighs is not usual pattern for ALS for sure (it starts distally and goes ascending). Isaak syndrom is also unfrequent and not deadly. You still can walk and you have lumbar problems which most probably are the reason for your actual condition.
I mean of course you may worry about general health condition, but I do not think you should think about deadly issues. Most probably the reason is benign and lies somwhere on the top, like lumbar issues.
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Re: Constant twitching

Postby Amylou29 on January 6th, 2014, 8:11 am

Yuliasir it's not your fault, it's mine for being in educated on this subject, so are you saying it's possible this is not bfs? I've had MRI scans etc and all are normal
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Re: Constant twitching

Postby Yuliasir on January 6th, 2014, 11:47 am

at least I am prone to idea that not always our symptomes point to worse (it cost me a lot of blood to get that view). Actually it is good that MRI scans are clear, should you have andy damage in the neural tissue, it would be seen. On the other hand, it is more and more admitted in the medical community that degree of physical trauma 9like disck bulge etc.) and intencity of pains or other unpleasant manifestation have very vague correlation, in other words you may have incredible 8 or 10 pains and your disls would be looking good on MRI/CT, or you can the awfully dislodged and virtually no pain. But MRI is useful to check first of all if you have andy suspicious lesions or not in the bulk neural tissue and supposedly you do not have nothing like that which is very good.

I do not say that it is not bfs, I just noted that this is rather uncommon to have so constant and so specific location which is not a hotspot (hotspots are usual), becasue usually BFS is characterized by migrating pains/cramps etc. usually fellows with specific local symptomes later were diagnosed with spinal trauma as far as I remember (syringomyelia, cycst etc.) Cyst could be formed by the way in few weeks, and it usually compresses a nerve root causing pains, tingling, burning wathever. Probably you should again address your doctors, just to be sure therer is nothing new in there.
At least for me your complain for pains in thighs looks rather specific and localized, so maybe lumbar zone should be of interest.

Again I would like to stress that those symptomes also are not typical for ALS, as far as I remember.
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Re: Constant twitching

Postby Amylou29 on January 6th, 2014, 1:35 pm

I'm a little confused now, everyone has been saying yes definately bfs bit now maybe not? I thought the main symptoms of bfs were twitching, muscle soreness and cramping etc, do my symptoms sound more like the nasty disease than bfs now? Thanks, Amy
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Re: Constant twitching

Postby veryworried123 on January 6th, 2014, 1:45 pm

yes you can still have bfs

search the website the majority of people have everything come back ok (except for cpk sometimes)

remember that bfs means "hey your twitching, its benign and we really don't know why. but either way its nothing dangerous"

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Re: Constant twitching

Postby Yuliasir on January 6th, 2014, 1:50 pm

defintely not nasty as I said many times already.

In any case of doubts it is anyway better to address professionals becasue we can rely only on your own description and do not see you in real time so to say and most od us are not doctors. Again, and again, thighs are not a point at which usually people with degenerative motor neuron diseases started to feel troubles.
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Re: Constant twitching

Postby Amylou29 on January 8th, 2014, 6:39 pm

I'm worrying myself stupid! I've read several posts from als patients who say they had twitching long before weakness and thighs are common places to have twitching from als, also als twitching is more localised ( like mine are ) I can't see the neurologist until april, it's a routine referral, don't think the dr realises I feel like I can't go on with this.
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Re: Constant twitching

Postby veryworried123 on January 8th, 2014, 8:30 pm

Perhaps you can provide us with some more info and details about those people you mention

Did they have just fasciculations
Did their Nero exam show anything more

What are the details?
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Re: Constant twitching

Postby garym on January 9th, 2014, 12:36 am

Amylou29 wrote:I've read several posts from als patients who say they had twitching long before weakness and thighs are common places to have twitching from als, also als twitching is more localised ( like mine are )


this is totally misleading....unfortunately these types of stories circulate on the internet and make their way back to this forum and cause panic. the problem is that we don't get the whole story behind these posts....like did they have a normal emg? if they did, how many medical journals have reported their case studies because it would truly be newsworthy. were they having other issues? how long is a long time? since when have thighs been a more common place for als? localized twitching is completely normal in bfs and quite common....my calves have literally been twitching continuously for 10 years. It is possible, though rare, for someone with als to notice twitching prior to weakness, but emg would absolutely have abnormalities beyond fascics. It comes down to the root cause of fascics with als that are not present in those of us with bfs. i'm not saying that the stories mentioned above are lies, but they are not taken in the full context of the situation and can lead to needless worry among our members.

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Re: Constant twitching

Postby volfan on January 9th, 2014, 1:33 am

Amylou: at some point you have to take a long, hard look in the mirror and ask yourself if somehow you truly believe you have what you fear. You are holding yourself hostage - that can't be what you really want. Do you, in your heart of hearts, think you have ALS? What can't you do - ALS is about failure ---failure to physically be able to do something. If you are not failing physically, then you need to move on mentally. It is hard, but you have to do this for yourself.
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Re: Constant twitching

Postby veryworried123 on January 9th, 2014, 12:38 pm

thanks for the post GaryM
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Re: Constant twitching

Postby Amylou29 on January 9th, 2014, 12:48 pm

Veryworried123 I read the posts on a site I shouldn't have been on and I high reccomend NOT going on there! Total state of panic last night ( I'm in England.) thanks for posting Gary, I was in need of some serious reassurance! Volfan, I completely agree with you, I just cannot seem to get this under control, it's rediculous! I think about als every time I twitch ( 24/7) and every te my left thigh is sore ( every day, all day) it's taken over my whole life for the past 8 months, I feel exhausted by it all. I think what worries me the most is my Drs have said bfs with out an emg.
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Re: Constant twitching

Postby veryworried123 on January 9th, 2014, 12:55 pm

why don't you just go get an emg

also please read good cop bad cop post

its one of the best one's i've read and there is a section in there from some of the best nero stating despite everything that a specific member was describing there's probably no need for an emg

hang in there we all have very bad days...me included
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Re: Constant twitching

Postby Amylou29 on January 9th, 2014, 2:06 pm

Very worried, I want an emg but I'm waiting to see the neuro, have to wait until april where is the post you're talking about? Thanks for that.
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Re: Constant twitching

Postby veryworried123 on January 9th, 2014, 2:40 pm

type in good cop bad cop in the search field

its by greg

if you can't find it let me know and i'll cut and past it for you

Good Cop....Bad Cop.
Postby Ghayes420 on October 16th, 2012
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Re: Constant twitching

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