I’m copying below a post from the ALS forum, written by an ALS patient. He wanted people like yourself to read this before posting on the site. It is long, but very necessary for you to read this, especially towards the bottom about twitching. Pay particular attention to the ALS doctor who said “I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice”. YOU DO NOT HAVE ALS
SymptomsThe major initial symptoms of ALS are clinical weakness, inability to perform certain functions (failure), atrophy detected by a physician, and upper motor signs detected on clinical exam by a neurologist. Some people may have slurred speech. If you don’t have any of these, why are you here? Also there are other reasons for these findings so even if you have one or all it could be something elseClinical Weakness—ALS is about failing, not feeling. ALS is about failure—falling down, being unable to stand on your toes or heels, being unable to button your shirt, being unable to lift your hand, being unable to open a ziplock bag, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb, but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work. First it is one muscle, then another ,then another so the things you can’t do increase. This is why you see progressive weakness mentionedSee also EMG, weakness and atrophyAtrophyAtrophy, or muscle wasting, is a symptom of ALS, but it is best judged by your PCP (primary care physician) or neurologist. If you are trying to judge it yourself, the atrophy must show a measurable difference between left and right sides, or between today and past measurements taken in the same manner (and hopefully by the same person). But remember, no human body is perfectly symmetrical and small differences are normal. Dents, dimples and other indentations in a muscle surface are common and generally meaningless. Also, atrophy generally follows clinical weakness / failureHyperreflexiaHyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Hyperreflexia is not uncommon and, especially if it is bilateral, is often meaningless. Speaking of reflexes, Hoffman’s sign is found in a number of healthy people so is not necessarily worrisome either. Speech and swallowing issuesMany visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech that others notice because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked "are you drunk?" it is a good sign!Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our undiagnosed visitors. Please look up “globus” and learn that it is a very common complaint especially among the stressed.Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue, stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benignOther “Symptoms”—TwitchingIf you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes. If you have twitching without clinical weakness, atrophy or an abnormal neurological exam, your twitching is probably not from ALS, which is a very, very rare disease..This is taken from the post of a member who saw Dr Orla Hardiman a leading ALS specialist. "I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.2. Fasics themselves are no real indicator of MND or any other disease.3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."Check out Benign Fasciculation Syndrome (BFS) for the FAQ. Please note the forum administrator is no longer active so new members can not join. bfsrecovery.com appears to be nonfunctional unfortunately.Also, see Twitching, false alarmPainIf you have pain, aches, tingling, soreness, etc., these point away from ALS. ALS is a disease of the motor nerves, not the sensory nerves. There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together or when immobility has caused frozen joints, bedsores, etc.Other Issues - AnxietyAnxiety can be a real problem that can endanger your physical health. It is what leads many folks to this forum, but it is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this forum, that should tell you something important about your mental health.AGEFor those of you who are under 30:The incidence of ALS is roughly 2 in every 100,000 . . . and of that . . . only 5% are diagnosed prior to the age of 30 . . . and the further away from 30 you are, the more diminished your chances.So let's do some numbers:2/100,000 is 0.002% chance (which is about the same chances of getting hit by lightning according to the Red Cross).Now let's take your age into consideration. Again, only 5% are diagnosed prior to age 30, so to get that percentage, simply take 0.002% and multiply it by 5% (i.e. 0.05). That gives a percentage of 0.0001% or a 1 in million chance . . . and that's at best. Again, the further away from 30 you are, the more diminished your chances".Please also take into account that a high proportion of young onset ALS is familial so if you do not have at least 2 blood relatives with ALS your chances are even less than above statistics suggest.FAMILY HISTORYHaving one relative with ALS does not significantly raise your risk of getting it. For more information read the sticky in the FALS subforum.EMGsDoes a dirty (abnormal) EMG mean I have ALS?EMG, properly done, is the gold standard test for ALS. But an abnormal EMG can indicate hundreds of other, non-fatal, diseases. So listen to your doctor.My EMG was done “too early”EMGs cannot be done too early. 70% of a nerves fibers die before you feel weakness. An EMG will detect that process long before you can feel it.Here is a simplified summary:1. ALS causes nerves to die.2. EMG detects effects of nerves dying.3. For ALS, muscles get weak and atrophy when they lose their nerves (no pun intended).4. Therefore a weak or atrophied muscle due to ALS will absolutely, positively show up on EMG. Clean EMG = No ALSSpecial note on assessing bulbar function: The most common areas EMG'd to assess bulbar function are under the chin or the sternocleidomastoid, and sometimes the tongue. If any of these sites were assessed , yes, you have been tested properly.However, an abnormal EMG does not necessarily mean ALS so a so- called dirty EMG needs to be interpreted by your doctor. There are many other more common things that will cause EMG changes and some of those findings will be PART of what is seen in ALS. Listen to your doctor and do not try to second-guess him/her.Why do I see people saying their EMGs were normal when their ALS started? For those people who are accurately reporting their diagnosis the answer probably is that their ALS started in their Upper Motor Neurons and then progressed to the Lower Motor Neurons. Upper Motor Neuron disease is found on clinical exam so these people were not told they were fine. They had an abnormal exam and the neurologist knew there was something seriously wrong. If your exam was fine ( or just some brisk reflexes which are normal in many cases) this is NOT you.Another EMG question that is frequently asked is if I have ALS in one location but the EMG was done elsewhere in my body would it still show? The answer is maybe, however if you are having symptoms in several areas and the neurologist only tests one if that is negative that is sufficient. There is no need to EMG every muscle that is symptomatic.You must also realize the doctors know their anatomy. Just because you see/ feel something in one specific location does not mean that is exactly where the needle goes. It may be above below or surrounding. If you have symptoms only in your left hand it is possible that an EMG of your right foot would miss something. But if it is your left hand and they examine that extremity don't worry.