ALS Forum Surprise: Fasiculations & Statins

the ALS forum/message board i stumbled upon has two post that have thrown me for a loop.

the first post mentions fasiculations before atrophy. some people responded that they had twitches before the atrophy set in. nobody mentioned weakness at all. i thought the twitches come AFTER the atrophy weakness?

the second post mentions about statin drugs for cholesterol levels. it mentions that some people on that board took these statins that started muscle pain/issues, then they developed al*? i did a search on this and found some articles that the statins could have an effect, but nothing says definite. just like nobody is really sure of why this disease starts in the first place. is this just another assumption? i have taken red rice yeast for my levels, and some red rice has been noted to contain statins so now i am freaking out.

basically i am a wreck from stumbling on to that board since i have had some joint pain in my index finger and thumb that the pain sometimes radiates to my wrist and forearm. happens sometimes on the other hand too. i dont know what to think anymore.

Hi

I've ached and twitched for 7 years, but I'm still walking talking and dancing. Try not to read ALS forums. I've done it in the past, we go there to try and reassure ourselves but instead just fill ourselves with fear. Try to just get on with living. If anything happens in the future to make you think you have something other than BFS then address it then.

Sharon

Ben, I don't mean to be argumentative, but fasciculations are caused when the muscle begins to lose connection with the motor neurons. The fasciculations may not be felt until after weakness and atrophy, which can cause some to be confused about the order, but twitches are always there before atrophy and weakness in ALS. This is a fact.

Many ALS sufferes DO NOT have fasiculations as the first symtom[personal stories],some people never have fasciculations until late on,some people have intermittent fasciculations,some continuous ,some widespread some not,some tiny fascics some big,some ripple some dont .Some people have fasciculations as a symtom of other deseases and disorders,and some als sufferes have fascics with no other symtoms but they all develope weakness and atrophy.But how many have just fascics for years with a clean EMG,clean clinical evaluations, no weakness and no atrophy no other symtoms what so ever like the majority of bfs ers have?

There are that many people on the ALS board that do not even have AL*? I never knew that...OMG, how sad is that. ...Jenn

Gelianna,
Your "facts" are a bit questionable. I would have to echo Double D in asking, where you got your information?

In only about 6.7% or less of **S cases, fascics are part of an early clinical presentation.

The reason the fascics are barely felt, as you've noted, is BECAUSE there is atrophy and weakness of the muscle already. One can rarely feel fascics in an atrophied muscle.

It is the dying off of the muscle which causes the fascics, not fascics that pre-empt the dying off muscle.

Regardless, as you have said, it is irrelevant whether fascics are the chicken or the egg in **S. Without clinical weakness, without a positive emg or a concerning neuro exam, the dx of **S ain't gonna happen.

Blessings,
Sue

As I understood BFS and ALS and many, many, many other diseases have the SAME symptoms, maybe even in the same order. If you would just watch and write it down or if you would tell everything to the doctor 'on the phone', he could not really descide if you have ALS, BFS or whatever.

UT the BIG difference is that you can MEASURE by EMG. So the neurologist can descide wheter your fasciculations are benign or malign. Just by the way they curves look an how your muscles reply on electrical stimulation. Correct me if I'm mistaking.

I had different EMG's, even with needles in my legs. He could'nt even measure the fasciculation; so 'officially' I even don't have them Anyway can I feel them buzzing and I can see them in my calves (about 5...10 twitches per minute on different spots under the skin).


It is allways the same when people have headache for many days / weeks / month: 'I certainly have a brain tumor!!'. 99,99% of them do NOT.[/b]

As I understood BFS and ALS and many, many, many other diseases have the SAME symptoms, maybe even in the same order. If you would just watch and write it down or if you would tell everything to the doctor 'on the phone', he could not really descide if you have ALS, BFS or whatever.

UT the BIG difference is that you can MEASURE by EMG. So the neurologist can descide wheter your fasciculations are benign or malign. Just by the way they curves look an how your muscles reply on electrical stimulation. Correct me if I'm mistaking.

I had different EMG's, even with needles in my legs. He could'nt even measure the fasciculation; so 'officially' I don't even have them Anyway can I feel them buzzing and I can see them in my calves (about 5...10 twitches per minute on different spots under the skin).


It is allways the same when people have headache for many days / weeks / month: 'I certainly have a brain tumor!!'. 99,99% of them do NOT.[/b]

paulrational. all people who die of ALS have fascics as a symptom. You are wrong, but I have a difficulty understanding most of your comments. I know English is not your first language, so that is probably why you miss my points as well. I'm sorry if I have distressed you.

Sorry guys. I thought this was common knowledge that ALS fasciculations were a distress signal sent by the muscle to try to reinnervate. I'm not sure where I got this info. If so many of you disagree, then I am wrong. I'm certainly not a neurologist. And the last thing I want to do is cause distress to the great people on this site by swearing by my own stupidity.

Sorry for any stress my error has caused.

everyone has misread my posts to indicate that I think fasciculations are an early presenting symptom of ALS. According to the research, it is only a presenting symptom in 6.7% of the cases.

You should understand, however, that this doesn't mean that the other 93.3% are not fasciculating. That's just not what was the presenting complaint.

Nevertheless, by the anger I have caused in many of your posts, I am truly ashamed of myself. I never ever meant to cause so much pain on this site. You folks have been a lifesaver to me in every way. I thought that I was presenting factual information on how muscles behave when they lose connection with the neurons in ALS. I thought this was common knowledge that would not scare or hurt anyone. Apparently I am wrong on all counts, and, again, I apologize to all.

I tell you what: On thursday I have a date with my neuro and I am going to ask him. How about that?

No anger here jeliota. Not even one I-ota. These discussions need to take place.

I believe there seems to be a growing concern by some members here that veteren members are trying to hide something. Like a big government cover-up ( I don't mean you jeliota ) about als vs bfs, and als forums vs aboutcommunity. The veterens here are trying to protect and reassure newbies, not because they may be wrong but because they have seen first hand how devastating anxiety is. Esp when it comes to als.

Als is very very frustrating for neuro's because they, after years of research, are no closer to a cure. There are a few, and i mean a few, rules als follows. One is emg's after twitching presents itself.

My doc told me something about the frustration of patients. And I believe it is one reason we get worked up over als stories. He said most patients don't know how to explain their symptoms. Perfect example is some come in saying there hand is numb when in fact it is actually clinacal weakness. Not to freak anyone out but if you can not move a limb AT ALL, or even make a grip, without periods of remission, that is clinacal weakness not numbness.

You may have even fallen into the twitching vs fasciculation definition that is out there.

DD

I would also like to ask were your info is from Gelianna,because mine is from many AlS sufferes who either knew my family members or were friends or neighbours to my friends, and not one single person ever complained of fascics as a symtom early in the desease process.Im not saying they never developed fascics but they were never a first symtom either seen or felt before they had weakness of which was all their first symtom[foot drop in one case[It lasted years],hand grip in another,slurred speech in another of which he didnt notice ,hand pain, yes pain in another, but never fascics. So even if fascics are evident in what you have been told it just dosent wash when it comes to everyone.Also im going to believe the answers to the questions i have asked to 3 neurologists.Do fascics come at the same time as weakness?Answer, certainly do,Do they come before weakness?REPLY, What a strange question look.Do ALS Fascics look like mine?Strange look benign can look the same as als ones.And one thing in common that 3 neurologists,3 doctors,2 als nurses told me was if you have ALS fascics for a number of years you would not be here to complain of twitches.

i assume the pain the people you are talking about was nonstop pain. not something that feels good one day and bad the next? i have had hand/knuckle pain the last week, but somedays i feel fine while the pain would come in various times. it hasnt stopped me from doing anything. i sometimes get it in the same place on the other hand too. it sometimes feels like a radiating/moving pain. i am getting it checked out soon.