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Old 10-01-2007, 08:51 AM   #1 (permalink)
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Default Twitching and the long road to ALS diagnosis.

Doctors have a difficult time diagnosing ALS. The average time from the onset of symptoms to diagnosis is 13 months. Some people come in so far advanced that they are diagnosed rather quickly. Others come in with very few symptoms and have to endure the process of ruling everything else out, often times enduring a wrong diagnosis along the way. Something along the order of 55% of all patients diagnosed with ALS go through unnecessary surgeries (spinal, carpel tunnel, etc.) prior to being diagnosed.

This being said, experienced doctors are very very good at diagnosing benign fasciculations. This is demonstrated in several studies, most notably the Mayo Clinic study, where none of the patients diagnosed with BFS were later determined to have ALS. The problem in ALS diagnosis has nothing to do with fasciculations. It is almost always related to trying to determine the exact cause of small peripheral neuropathies, nerve recruitment, etc. It would be completely inaccurate to assume that the patients who present with fasciculations as their only symptom are being diagnosed with benign fasciculation syndrome or being brushed off as okay. I’m not saying that this absolutely never happens, but it is exceedingly rare. Experienced neurologists will tell you that anomalies will almost always show up on the EMG/NCV in these cases. They won't know what's causing the anomalies, but they will know that something is wrong.

I post this here only because there are so many people these days who are obsessed with twitching and ALS. This is because twitching is extraordinarily common and because Google loves an incurable disease. I’m very confident in saying that if you only have twitches and have been given a clean bill of health by a competent neurologist that you should stop worrying about ALS.

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Old 10-01-2007, 09:13 AM   #2 (permalink)
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Default Yeah But

Hey Jeloita this is jenny i tottaly understand what you are saying, and that is def. some good info. but what about some of us here who have only had 3 or 4 emgs within 6 months is that still benin because some pals on here have had normal emgs then come later to find out they have als. i thought bfs come and go. Bfs doesnt dtay countinuous for 4 5 6 months I could be wrong. thanks jenny
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Old 10-01-2007, 09:32 AM   #3 (permalink)
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Default this is what iam talking about

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In August of 1996 Jen and I were in Mendocino, CA celebrating our anniversary. We both got massages, and after I got mine, I noticed some of the muscles in my back were twitching. I first reported the twitching during a routine physical in January of 1997. My general practitioner referred me to a Neurologist who I saw in May. Because there was no muscle weakness at the time, he could only diagnose me with “benign fasciculations”.

In May of 1998 I noticed that my left hand was getting weak. After a couple months of procrastination, I returned to the Neurologist who told me he was fairly certain I had ALS. They did a couple of nerve function tests, an MRI of my brain, and they scanned for heavy metals. When we came back to hear the results of the tests, the Doctor confirmed the diagnosis, and sent us to an MDA ALS clinic in San Francisco for a second opinion. They agreed.

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Old 10-01-2007, 09:48 AM   #4 (permalink)
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Why have you had so many EMG's in 6 months? Is that at the doctor's request or yours? And what were the results of the EMG's? Is your doctor tracking something or just earning a paycheck by shooting electricity through you and sticking you with pins on a regular basis?

As for the rare person who has a normal EMG and later develops ALS (and I assure you that despite what you read on web forums that this is very rare), there are many possible reasons for this as I have addressed in prior posts. For one thing, BFS is very common and people with BFS get ALS at the same pace as the general population. So a person with BFS today may also have ALS tomorrow. This doesn't mean the two were related. Thanks to the internet, more and more people are becoming aware of their BFS. Used to be only physicians had it because only they would be worried about twitches.

As for, "i thought bfs come and go. Bfs doesnt dtay countinuous for 4 5 6 months I could be wrong."

BFS can come and go or it can stick around indefinitely. I know people who have twitched for more than 10 years. Actually, it would be rare for BFS to just go away, though some people do have periods of calm. Unfortunately, most BFS'ers twitch unrelentingly for years as opposed to months.
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Old 10-01-2007, 09:53 AM   #5 (permalink)
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Default my request

My doc did not want to do it and plus i got a second opinion actually he was really upset with me and i had to beg him to do it. he wont see me he said anymre for emgs he really is a loving doc but he thinks iam wasting my time, he gets mad i go on the internet and bring him stories like this one. why do you not think those emgs are good enough? iam going to als clinic today and iam sure he will tell me something. thanks jenny
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Old 10-01-2007, 09:54 AM   #6 (permalink)
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In the example you show, there is no indication that an EMG/NCV was performed when he was told he had benign fasciculations. It sounds like he just had a routine neurological exam. This is not the proper way to address someone with fasciculations. All patients presenting with fasciculations, especially focalized, should undergo an EMG/NCV. This is generally not how BFS presents. I don't know a single BFS'er who only twitches in one spot.
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Old 10-01-2007, 09:55 AM   #7 (permalink)
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But so did other peoples on here and thats what scares a lot of us.
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Old 10-01-2007, 10:00 AM   #8 (permalink)
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We're posting so quickly we're getting confused as to what we are responding to.

I think your first EMG was plenty. All the rest were overkill. You will be told at the ALS clinic today that you are fine.

Your next step should be to address your anxiety so that you can move on with your life. See your physician and get a referral to a psychiatrist or get a prescription for medication. Then search Google for Benign Fasciculation Syndrome and follow the second link. There is a forum there filled with people just like you: twitching, worried and fine.
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Old 10-01-2007, 10:08 AM   #9 (permalink)
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"But so did other peoples on here and thats what scares a lot of us."

I don't believe you'll find that a lot of people on here who are actually diagnosed with ALS had a clean EMG/NCV initially and later had a dirty one and were diagnosed with ALS. It is difficult to figure out on this site who has ALS and who just thinks they have ALS.

I AM ONLY ADDRESSING THOSE WHO HAVE NO SYMPTOMS BUT TWITCHING.

I am not saying that some on this site don't have real reason to be concerned. I have nothing but compassion and empathy for all who are worried about ALS and experiencing terrible symptoms. I can only pray that those with atrophy and weakness along with their twitching are eventually diagnosed with something treatable.
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Old 10-01-2007, 10:23 AM   #10 (permalink)
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Default what do you mean about focalized?

mine are there all in the same spots mostly in my legs. some neck arms eye nose etc you name it. i dont quite understand i really appreciate all your help i also have weared vision problems to thanks jenny
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Old 10-01-2007, 10:33 AM   #11 (permalink)
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I mean twitching in one spot only. You have generalized twitching.

What type of vision problems do you have? Vision problems are certainly not a symptom of ALS.
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Old 10-01-2007, 11:35 AM   #12 (permalink)
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Big Huge Eye Floaters That Go On My Tv Screen And Never Leave My Eye. Its So Weared There Not Your Typical Eyefloaters. And When I Lay Down At Night I Hear Weared Sounds In My Neck That Make A Weared Noise.
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Old 10-01-2007, 11:53 AM   #13 (permalink)
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If the floaters do not move (or float around) as much as usual floaters and are darker, or began as darker than normal floaters, then there is a possibility that you are having hemorrhages from the small blood vessels in your eyes. This is potentially a very very serious problem, and you need to see an eye doctor or a retina specialist immediately.

If the weird sound in your neck is a sort of whooshing sound that corresponds to your pulse, then this could be caused by a number of things but needs to be checked out as soon as possible. Amongst other more benign causes, you could have blocked or torn arteries.

Have you discussed either of these things with your physician? The last thing I want to do is to panic you, but these two symptoms are much more troublesome than twitching and have nothing to do with ALS. Please go see a doctor.
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Old 10-01-2007, 12:26 PM   #14 (permalink)
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There are quite a lot who have had clean EMG's and later been diagnosed, but most concerning to the posters here is the fact that not only are they twitching, but they have other complaints and really feel quite ill. What there isn't a lot of, is JUST twitchers, most of us have accompanying symptoms. And as far as BFS, fibromyalgia, all those "syndromes", they're just a catch all for "we don't know what is wrong". Twitching is because of irritation of muscles or nerves of some type, just for a reason researchers haven't uncovered yet. Myself, I would much rather have a clear explanation instead of pasting some name on something they don't know about. I just wanted to add, that I was quickly turned off by the website aboutbfs.com when I noted so many grammatical and spelling errors. I have always found reliable websites don't have problems such as those! JMO
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Old 10-01-2007, 12:57 PM   #15 (permalink)
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"There are quite a lot who have had clean EMG's and later been diagnosed"

I've already addressed that.

"most concerning to the posters here is the fact that not only are they twitching, but they have other complaints and really feel quite ill"

As I said, I am addressing those with only twitching. I would never make light of anyone's suffering.

"And as far as BFS, fibromyalgia, all those "syndromes", they're just a catch all for "we don't know what is wrong". Twitching is because of irritation of muscles or nerves of some type, just for a reason researchers haven't uncovered yet. Myself, I would much rather have a clear explanation instead of pasting some name on something they don't know about."

And we don't really know what is causing ALS either. In fact, many many diseases and conditions we don't know a cause for. Just because we don't know what causes plaque to form in alzheimers patients doesn't make it an unreal disease. What we do know about BFS and fibromyalgia is that they don't kill anyone. Personally, I would rather have a benign diagnosis and an unclear explanation than a very specific death sentence.

"I just wanted to add, that I was quickly turned off by the website aboutbfs.com when I noted so many grammatical and spelling errors. I have always found reliable websites don't have problems such as those!"

I have no idea who wrote the information pages, and I am unrelated to the site in any way, but the idea that reliable websites "always" are written in perfect English is odd logic.

In any event, I am posting reliable information here in an attempt to reach the small portion of this site's users who are obsessing over ALS when their only symptoms are generalized twitching, and they have had clean neurological work-ups, including EMG's, etc. My thought was to be a source of comfort and support to these people. I am also a volunteer for the ALS Association and have posted on here asking if any ALS sufferers in my area need help of any type. If my posting is unappreciated and a cause of suffering, I will certainly stop. That is not at all what I intended.

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