Thelma—
I’m giving it one last, honest-to-goodness blue in the face try. I hope it reaches him.
Alex--
I spent a lot of time writing this to you today because I want to help you. Please listen.
I think your concerns are legitimate that something is going on with your body. Actually, your case and mine sound incredibly similar. That doesn't mean you, or I, have ALS. To move away from your current mindstate, I think you have to recognize two issues:
1) You think that no answer=ALS. The fact that you "don't see any more options" doesn't mean there aren't any other options out there. You may have to live with the fact that you have something weird going on with your neuromuscular system, that the doctors may never be able to diagnose it. That doesn't mean you have ALS.
2) You are searching for answers on the internet and in message boards and the answers that you’re looking for aren’t here. There are guides, there are people who give advice, but you are looking for absolutes and people can't give those to you here. No one can say 100% that you do or don't have ALS. You've asked questions and they've been answered, and predominantly the response has been "sure doesn't sound like ALS." After 14 threads, I'm not sure what else you expect. People can tell you "clean emg = no als" or "it doesn't start with twitching" and you find the exceptions to the rule rather than being comforted by the rule itself.
There are such a myriad of neuropathies, myopathies, etc out there that we don't know about and that many doctors don't even know about. Just because you know about ALS, you see that some of your symptoms are also found in ALS and you conclude that there are no other answers other than ALS. That’s a problem, man! It's the same as someone who gets headaches, vision problems and forgets things a lot and they assume they have a brain tumor. All of those things are found with brain tumors, but there are plenty of other explanations. And sometimes, there simply isn't an explanation that any doctor can find. I’m saying that a lot because I think it’s an important point.
Look man, if everything you say is true, and you’re conclusion is you think it might be ALS; I might have it as well. "The first interosseus is the first muscle that atrophies in ALS if it starts in the hand" "My emg, that was done in WITHIN first 2months of twitching was clean, BUT I read several posts of first CLEAN emg" "My right arm (whole bicep) has an almost CONTINUOUS fine twitch going on, also a lot of twitching in forarm and right hand = this is the hand WITH THE DENT"
My story began with twitching in my left foot that soon spread to my entire body. All the time, intense diffuse fasciculations. I got an EMG and they said they saw fasciculations but nothing else. Clean. They said BFS, and I was certainly pleased with that diagnosis. Then, I got a non-stop, fine rhythmic twitch in my first interosseus that lasted for months. Non stop. Then, it stopped. Before long a huge ridge showed up in my thenar muscle. Clear dent. My PCP told me it was "muscle wasting." Another EMG--- clean. Then the weakness showed up-- after I played softball, my pinkie finger basically stopped working. It was so weak I couldn't type or use my ipod with that finger; it was like it had died. But then, the strength returned. To this day, that happens with other muscles as well, but the strength always comes back.
I have fasciculations, atrophy, cramps and intermittent weakness. My foot often scrapes or catches on rugs. I understand your fear, man; honestly. We're in the same boat. But I don't think I have ALS. I'll tell you my top ten reasons why I don't think I have ALS and hopefully this can help how you see your situation.
1) ALS is rare. Obviously it is very real and it affects many, many lives. But if you're having neurological and muscular problems, there are plenty of other conditions that should be investigated before ALS is discussed; ESPECIALLY if it's not super obvious. (by obvious I mean if your muscle weakness is preventing you from doing every day things. Muscle weakness is THE primary ALS issue, and you don't even have that.)
2) We're young. We are significantly outside of the average age that ALS hits. Again, it does affect people in our age bracket, but it is rare. ALS is rare to begin with; our age makes it even more unlikely.
3) Clean EMGs. If problems are caused by ALS, it should show up on an EMG. Often times an EMG can detect problems before the patient is even aware of it. So if you're experiencing symptoms from ALS, an EMG should show that. Yes, you can find examples where early EMGs did not pick up problems, but again; it is rare. I don't just have twitching. I have missing muscle-- a noticeable ridge of atrophy. If it was caused by denervation; I'm pretty sure the EMG would have found evidence of denervation.
4) Twitching is not usually a first symptom. Weakness is usually the presenting symptom. Yes; some people have started with twitching. One neurologist told me of a study in which they examined 500 ALS patients and 8 presented with twitching as a first symptom. You can look at those 8 and say "see?!?" or you can look at the 492 who presented with something other than twitching and feel confident that you’re okay.
5) Weakness usually precedes atrophy. Most stories that I've heard on this board confirm that if you have atrophy, you would have experienced weakness. You can find doctors to say that other muscles will pick up the slack, and maybe that's true in some cases, but for the most part the weakness shows up first.
6) Doctors don't think it's ALS. If your doctors are saying "no ALS," please celebrate those two words. They see ALS; they've gone to medical school about this stuff. No matter how many times you've googled those three letters; they know more than we do about diagnosing ALS. They also have the benefit of seeing you in person and being able to assess you clinically, which no one on the internet can do. They are the experts, the internet is not. Listen to them.
7) Our bodies are weird. Seriously. There are plenty of things that I've noticed on my body that I wouldn't have noticed if I wasn't hyper aware of ALS or if I wasn't trying to examine myself to figure out what was causing my twitching and other symptoms. I too look at other people's hands and examine them to see if they have what I have. Dents, bumps, scoops, thinning; no one is symmetrical and everyone has anomalous things on their body. My girlfriend showed me her thumb muscle; though there wasn't anything as dramatic as mine, it definitely had weird divots that mine didn't. I saw someone's hamstrings the other day that I would be petrified if mine looked like that. Chances are they didn't have ALS and never even noticed the big indent on their hamstring. It’s just a weird thing on their body.
8) ALS is not subtle. You don't have to guess whether or not you have ALS before long. It's true that the early stages can be, but if you have ALS, you won't have to question it. You will see it, the doctors will see it, the tests will see it. Which leads me to...
9) Time will tell. The more time that passes where you can't see it, the doctors can't see it and the tests can't see it; the better. I was legitimately scared my first year. My second year I was better. I've been having these symptoms for over three years. I can still type, turn my keys, tie my shoes, button my shirt, etc. I’m much, much better now.
10) Other things can cause similar symptoms. There is a spectrum of health problems between "Benign Fasciculation Syndrome" and "Amyotrophic Lateral Sclerosis." I once entered "fasciculations" into a symptoms checker and it told me that there are 43 different suggestions as to what can cause it. Now, I understand that we both have problems beyond just twitching. But I try to think of other things that could cause my problems-- I take thyroid replacement medicine and maybe my lack-of thyroid is causing this stuff, I'm a cancer survivor and I could be suffering the long term effects of chemo/radiation, I fractured my neck a few years back and maybe that messed up my spinal column,etc. And then there are just weird neurological conditions that strike for no known reason, and they don't always fit a neat categorization such as MS, ALS, etc. Accept the fact that you may have something wrong in your body and that neither you nor the doctors will be able to completely figure it out. "I don't know" does not mean "must be ALS then!"
You see what I'm getting at? You can argue any one of the points I made. You can find exceptions to each of those. But if you take them all together, you have a pretty convincing argument for why neither you or I should be losing sleep thinking we have ALS. Rare disease with rare presentation at a rare age with doctors and tests saying “no ALS” adds up to a pretty freaking unlikely case of ALS. I said it on the other boards and I’ll say it here—if you have a 95% chance of not having this disease, but a 5% of having it why are you focusing on the 5%?
There are PALS, families of PALS and caretakers of PALS on this board who are kind enough to help out those of us who are undiagnosed by answering our questions. And even though I know you don’t mean any disrespect, it’s impolite to ask the same questions over and over knowing that they have answered them in the past, and won’t be able to provide you with any new insight. I would highly recommend that you follow up with your doctors to try and figure out what’s going on, and maybe get one EMG a year tops to see if anything has changed. But the most important things to do are adjust your perspective, be optimistic and let time pass. Try to learn from your experiences and let the experiences of others on this board give you some perspective. Remember, you’re hoping that the doctors are right while other people here are praying that they’re wrong in their case. Don’t forget how fortunate you are to have those clean EMGs and those hands that are still functioning just fine. You can go out and live your life in ways that other people are not able to do; don’t waste that time that you have filling your mind and your days with an irrationally disproportionate level of fear and anxiety. Live your life and try to figure this out with your doctors.
I’m pulling for you man, seriously. Send me a message if you want to talk or something, or if your docs give you any new information. But I really hope that you don’t continue to create threads asking the same questions over and over. Best of luck.
Andy