Questions for Aaron

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Questions for Aaron

Postby pppoo on January 5th, 2003, 12:26 pm

It's been 8 mos. so far since I started twitching, but I still have some concerns I was wondering if you could clear up. I've read that it takes one year to diagnois ALS. Is that only if you haven't had a normal EMG within that time frame? On a good note I did have a normal EMG at 4 mos. The doctor never used the term "clean", but he said I did not have anything to worry about at this time. Is it also true to completely rule out ALS you should have two EMGs given within 6 months of each other? Does atrophy come before or after weakness? I noticed a couple of weeks ago when I contract my pinky finger the outer side of my palm sinks in much differently than my other hand does. I know that each hand is not symmetrical, but it looks unusual. It looks normal when I relax my hand. Should I be concerned?
Thanks in advance Aaron. You're opinion is greatly appreciated.

Postby twitcher(nli) on January 5th, 2003, 5:48 pm

I've been post crazy recently, so I figured I'd throw in my two cents.
1st, did your Neuro find anything of concern on exam? If not, that in combination with the normal EMG is great news. You can safely get on with your life. According to the Cleveland Clinic(one of the premiere ALS clinics), they have never seen a person with twitching and a clean EMG go on to develop ALS. You can take great comfort from that.

Ahh, looking for the ever elusive body symmetry. Both of my hands are different when I flex my pinky, too. Also, I have a "dent" in the palm of my left hand in the meaty part an inch below the pinky. I was POSITIVE it was atrophy. I saw three doctors about it. All of them said I was fine. My Neuro got sick of seeing me and gave me an EMG, including the sunken area on my hand. Long story short, everything came out COMPLETELY normal. Not even a facsic.

Postby Arron on January 6th, 2003, 12:36 am

pppoo, I'll try to answer your questions as you asked them.

Q; "I've read that it takes one year to diagnois ALS. Is that only if you haven't had a normal EMG within that time frame?"

A; There is no "set" time to diagnose ALS. Like many other's have said on here. It is basically a "rule out other things first" scenario AND an EMG to accurately diagnose ALS. The key is how the EMG is given and how it is read. As with any test in just about anything you can think-of in life, if the test is inaccurately given or inaccurately read, then it may take quite a bit longer to diagnose. EMG's are no cake walk. They are a highly specialized and delicate test that should only be done by experienced neuro's, otherwise, sure... the results may be misread which would lead to a longer diagnosis time. It is a combination of that along with many people not getting an EMG in the first place that can make for a lengthy diagnosis. Basically, the bottom line is, with a good neuro and a properly given / normal EMG, you are fine.

Q; "Is it also true to completely rule out ALS you should have two EMGs given within 6 months of each other?"

A; That is kind of wishy washy. Basically if you have a good EMG and it was given correctly and thouroughly by a trained and experienced neuro, one should be suffecient. It isn't only the EMG. An experienced neuro will tell you that they can usually spot an ALS case the minute it walks through the door and that twitches are "normally" an after effect. 99% of the time, by the time twitches have started, there are usually other obvious signs going-on by then as well. Of course this is only the "norm". Sure there are rare cases where doctors were too laxed and too hasty to diagnose a benign condition when they should have been a bit more thourough or aggressive in their exam. But this happens all of the time with common things like cancer. I just had two friends die from cancer simply because doctors just blew their symptoms off as "nothing to worry about" and they both had malignant cancer that ended up killing them because by the time other doctors found the real problem... it was way too late to do anything for them. So, if this was ALS, would that mean that it took several doctors a long time do diagnose them? No way. It simply meant that there were at least two GP's out there that should have had their mind more on the patients than the golf course or at least had the decency to refer these poor (dead) guy's to someone with a bit more experience instead of blowing it off so soon.

Q; "Does atrophy come before or after weakness?"

A; First, think of what atrophy is. It is wasting and shribbling muscle tissue. Why is it wasting? Because it is dying because it isn't being used anymore. So, you would most likely have some weakness before any wasting was seen, but this is not always the rule, especially in larger muscle groups. Either way, whichever comes first, there are obvious signs in either scenario. Weakness that doesn't go away or come and go (like fatigue comes and goes) is surely noticable, right? Wasting muscle tissue is also a big red flag and would be noticable too, Right? So in reality, it doesn't matter which one comes first because you WILL see something seriously wrong with either one of those symptoms.

Q; "I noticed a couple of weeks ago when I contract my pinky finger the outer side of my palm sinks in much differently than my other hand does. I know that each hand is not symmetrical, but it looks unusual. It looks normal when I relax my hand. Should I be concerned?"

A; Your mind is unbelievable when it comes to anxiety and making thing appear as they aren't. Staring at yourself in the mirror when you have anxiety is a sure fire way to find something that probably isn;t there. I can't tell you how many times I have read posts from people SURE they had ALS because their tounge had definate depressions in it, or that they had definate indentations in their leg muscle that wasn't there before their twitching started. And I mean, I've seen thousands of these posts and you know what? Not one of them was diagnosed with ALS and the doctor usually points out that he too has the exact same depressions that you were SURE you didn't have a month ago when the twitches first started. NO ONE is symetrical. I have a calf muscle on one leg that is 2" smaller than the other. I also lift heavy engine blocks and cylinder heads all day and favor one leg more than the other (without noticing it) because of a really bad bike accident I had in a race back in the 80's that ate-up my ankle. It doesn't hurt anymore and hasn't for years and years, but my wife and friend's still say I walk with a limp and it is favoring my bad leg. So with that, I am working one leg harder than the other, which in turn makes one of the muscles larger than the other.

Many doctors have pointed out that when you are anxious (like after finding out that the little twitches you have MIGHT be related to ALS) you will push your tongue up against the roof of your mouth or against your teeth as you tense-up. This makes teeth marks and depressions and again, I can't begin to tell you how many thousands of posts I have read where someone will swear on their life that they have atrophy depressions in their tongue from bulbar onset ALS, when in ALL of the cases, it was nothing more than anxiety induced. Sure the depressions weren't there last month... these people also weren't scared to death last month thinking they had ALS and they weren't staring at themselves all day in the mirror either a month ago... You mind usually kicks-in about that time and sure enough, swallowing problems will start, voice problems and so on... Like I said, the mind is unbelievably powerful!

If you have had a clean EMG 4 months ago, and that was 4 months into the twitching, I would say you are spending undue time worrying about nothing. Think of it like this, no matter what anyone says, the fact of the matter is this, if a muscle is twitching because of ALS, it is twitching as a last ditch effort to stay alive. It is a secondary reaction to the dying nerve endings and muscle tissue. If you had an EMG done at 4 months after you started twitching and it was ALS, it would SURELY be picked-up on an EMG by then UNLESS the test was misperformed or misread, and even if that were the case, after 8 months of twitching, you WOULD have some kind of definate sign that something serious is going-on.

Forget about all of that one year or the famed 13.4 months before being in the clear BS. Because that's all it was, was BS. There never was an EMG performed in that 13.4 months on that ONE person, and when there finally was one performed, is was of course abnormal. You have already had an EMG and it was fine. Personally, I would not be worried at all. Hell, I haven't even had an EMG yet myself. I just took this whole thing cold turkey and fought it out MY way... by myself. I am VERY strong willed and strong minded, you can beat this thing too!

So, my advice? If you have any doubts to whether this is benign or not AND it is going to take-over your life, hamper your work, cut into your family time or anything like that, then go get a second EMG by a second doctor so you can put it all behind you once and for all. Trust me, this ALS fear can eat you alive if you let it. I've already been there and done that, PLEASE don't make the same mistake I made and lose a good portion of your life over this crap, OK? It isn't worth it.

I hope that helped some.
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby pppoo on January 6th, 2003, 8:57 am

Aaron, you're right, your mind can certainly play games with you if you let it. Sometimes I wish I could just turn back the clock (don't we all) because I didn't realize what a twitch meant 8 mos. ago good or bad until I got curious and found the dreaded term ALS. The best thing that did come out of all of this was finding this website. It has been a Godsend and so have you. Thank you so much for putting my mind at ease again and answering all of my lengthy questions.

Postby pppoo on January 6th, 2003, 10:58 am

Thanks to your reply also...Twitcher(nli). I had to laugh at your posting, because you sound so much like myself. It's great to know their are many of us out there with the same concerns even though our doctors and families sometimes think were crazy. As Aaron mentioned, our mind does play tricks on us. Take care.



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