time between fascs and weakness

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Postby twitcher(nli) on January 4th, 2003, 1:18 am

I never would agree to end a dicussion because it is easily misinterpreted. I do think a different venue is a good idea though. A forum where those that are beyond the ALS scare can discuss/argue the more scientific points.
I do 110% agree with you on living life! I too think it is too easy to get wrapped up in the BFS thing and forget about the more important things in life. Nothing in life is guarenteed and all we really have is right now. Great post!
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Postby Nole on January 4th, 2003, 11:50 am

I agree a venue where those of us who are over the "scares" could present some facts would be beneficial. Posting them on other forums can be very scary for those who are just trying to figure out the BFS stuff and have any symptoms that scare them. They need our support rather than statistics that may scae and confuse them. This is something we may want to bring up to John. Thanks for understanding.
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Postby Arron on January 4th, 2003, 2:32 pm

I think we all agreed on the 6.7% study, I might have misinterpeted the posts and wanted to make sure readers understood that none of the people in that study had EMG's and when they did, they weren't clean, that's all.

You guy's are right, it is how the tests are written and interpeted that means the most and I have stated several times before that ALS can and does present with twitching alone sometimes, if it's in large muscle groups. I mean obviously if it starts in a small finger or the palm of your hand, weakness will show up much faster than if it started in say one of your quadracepts. That's pretty elementary. The muscles are indeed dying, after all that what ALS is, and even though weakness might not be "felt" right away in a large muscle group, it is certainly there and will show up sooner than later and will most certainly show-up in aproperly performed and properly read EMG. That is a fact, no grea area.

The new poster was right as well, not all clean EMG's are really clean, which would give us a percentage of people in a black and white study of "people who present with clean EMG's". This is very much like people diagnosed with cancer. It is how the pathologist does the biopsy and how he reads it. Doctors can misread or misdiagnose a patient much like a doctor can blow-off twitches as benign without taking a closer look. Even with something as solid as cancer, if they don't get a good biopsy and have a good slide to look at under the microscope, it can come-up benign rather than malignant, and unfortunately, it often does as we hear so many neighbor's, friend's and relatives get misdiagnosed with a benign tumor that is later found out (usually by another doctor) to indeed be malignant. Cancer is solid and real, so is ALS. It isn't a mystery disease and yes, it can be diagnosed right away. It isn't illusive like AIDS. It doesn't have an incubation period like so many other true "illusive" diseases.

ALS and EMG's are no different. If the doctor misperforms the test or misreads it, it is pretty useless indeed, and that would surely make for a percentage of peope that would show (statistically) that they had clean EMG's at the start of their ALS when indeed, the EMG wasn't actually clean at all, it was simply misread or misperformed or possibly perforemed in an area or side of the body that hasn't been affected quite yet.

We have heard of many posters say that they had twitching in their calf and the doctor did a few needle sticks for the EMG in the person's upper right shoulder. Hello??? That is about a in line with going to a doctor with a sore throat and he has you take-off your shoes to examine your feet instead! You HAVE to at least be in the right limb and on the correct side, especially early-on, or ALS 'might" not show-up on the EMG in it's early stages. Again, IF ALS is present and the EMG is performed in the area first affected, there is NO reason the EMG would come-up clean, no reason at all. That is pretty black and white. This kind of information certainly doesn't make for a good final study result if these critical factors (mis read or misperformed EMG's) aren't included in the test.

Yes, I said ALS is a black and white disease, and actually it is. You ALWAYS have denervation, you ALWAYS have weakness and atrophy, you ALWAYS have an abnormal EMG (again, if performed and read correctly) and there are several other ALWAYS factors as well. That is pretty black and white. There is no "benign" ALS like there is in cancer. You don't get ALS and go into remission or get treatments that slow it's progress down (not yet anyway), so yes indeed, it is a pretty black and white disease.

Sure, some people live longer than others with ALS... well, some people live through several heart attacks as well and other's drop dead right then and there when they have their first heart attack. Those are grey area diseases. You can have a mild heart attack or you can have a major heart attack. You can survive either one or you can be dead before you hit the floor with either one. That again is a grey disease. ALS is a sure thing in how it happens, what it does. You don't get a mild case of ALS and you don't go into remission or get treatments and that's what I meant when I said that ALS is a pretty black and white disease.

I think everyone was right. This whole thing got blown out of proportion. It's really no big deal and it is certainly nothing for any of us to get upset over. I am a very strong person, both bodily, and in personality. I like to make sure my point gets across very clearly. I've always been "the boss" in all of my jobs, so sometimes I am a bit long winded and maybe a little bit too much to the point. In retrospect, short sentences don't contain much information.

I certainly wouldn't want to scare anyone off from posting new test studies or statistics on here. Any and ALL new information is useful (good or bad) and like we all know too well, it is how the results are read and how they were arrived at that counts even more than the basic numbers themselves.

I hope I didn't offend anyone and sorry if I came across a bit strong headed. That is just the way I am, both in life, business and in person. I just want people to know that I am here to help and share good hard facts and to show as much support as I can because I have already been through the living hell of sheer fear over having ALS and I can tell you first hand that it totally sucks! I don;t want anyone to go throuigh what I went through and when I was going through it, this site wasn't even around. I had no help until later-on, which was a bit too late. You all take care!
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Postby twitcher(nli) on January 4th, 2003, 4:50 pm

Hi Arron,
my point about ALS not being a black and white disease is that many other conditions can produce the same sx. And there is no test that says you do or do not have ALS. Everything else has to be ruled out before a dx can be given. Sure, if you have it, you have it. That isn't in dispute. My point was more along the dx side of things. For instance, one can't even be dx with ALS until three muscle groups are affected. While it may be reassuring to tell people in fear of having ALS that the dx is easy, that is not the case. That said, if your only sx is twitching and you've had a clean exam and EMG, one can rest easy that they do not have ALS.
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Postby Arron on January 5th, 2003, 8:30 pm

exactly... that was my point too. You don't "kind of get" ALS. It is pretty black and white. You either have it or you don't. There are no "mild cases" or "kind of" cases and it's course is also black and white. It disconnects the nerve pathways between the brain and muscles and the muscles die. That too is black and white. I didn't mean diagnosing it was so easy. If it came across that way, sorry. It's hard to write and express your thoughts and feelings accurately, so a lot of things get mis written or misinterpeted. We all have to remember that... including myself :?
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