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  1. #1
    Join Date
    Aug 2013
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    20,880

    ALS and why you DON'T have it!

    There have been quite a few threads on the subject and the ALS rabbit hole is one of the toughest to get out of. I see members posting on the ALS forums and I truly advise not to do that as it's disrespectful to those suffering. On the forum there is a "READ ME" sticky that I want to copy here for those that entertain the thought they might have this. Please read it and let it sink in!

    Positive thoughts



    Do I Have ALS?

    First, in spite of reading this, it is a question that can only be properly answered by a doctor seeing and examining you. We can offer an opinion as to whether your symptoms sound like our experience of ALS. We can give our best advice on whether to push for another opinion. However, first and foremost if you have a worrisome symptom see your doctor. If you have not yet done so and followed their recommendations don't expect us to say anything different

    Symptoms
    The major initial symptoms of ALS are clinical weakness, atrophy and hyperreflexia. Some people may have slurred speech. If you don’t have any of these, why are you here?

    Clinical Weakness—ALS is about failing, not feeling.

    ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, 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
    See also EMG, weakness and atrophy

    Atrophy

    Atrophy, or muscle wasting, is a frequent early 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.

    Hyperreflexia

    Hyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Slightly overactive reflexes are not uncommon and, especially if they are bilateral, may be meaningless.

    Speech and swallowing issues

    Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech 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 DIHALS 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 benign.


    Other “Symptoms”—
    Twitching


    If 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 hyperreflexia, 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 alarm

    Pain

    If 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—
    Anxiety


    Anxiety 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.

    AGE

    For 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 HISTORY

    Having one relative with ALS does not significantly raise your risk of getting it. For more information read the sticky in the FALS subforum


    EMGs

    Does 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 ALS
    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 negstive 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
    Last edited by Fishmanpa; 13-03-17 at 15:49.
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  2. #2
    Join Date
    Mar 2017
    Posts
    208

    Re: ALS and why you DON'T have it!

    this is a good thread. I seem to get hyperreflexia off and on. One time I went to the doctor and my left leg kicked out so fast, but the next appointment I had no hyperreflexia at all. I think it should be noted that hyperreflexia can be a symptom of many things, anxiety included.

  3. #3
    Join Date
    Nov 2015
    Posts
    379

    Re: ALS and why you DON'T have it!

    Fishmanpa, this is the thread I was trying to find the other day! It's really good, very normalising, and it helped loads when I was in the ALS rabbit hole. (Love that we now collectively have a name for it as we all fall down it in the same way!) Thanks for posting, I hope people get a lot of benefit from it.

  4. #4
    Join Date
    Jan 2017
    Posts
    1,273

    Re: ALS and why you DON'T have it!

    This is a great post. Based on the statistics of diagnosis, it would be utterly remarkable if everyone on this forum who thought they had ALS really did. It would be a statistical anomaly worthy of international news! Just going through the first 5 page of the forum, 5 people are worried they have ALS. That would be 5 out of 60 people, when the actual instance is around 2 in 100,000. It would mean that there was an 8.3% change of someone on this forum having ALS vs. 0.002% chance in the general population.

  5. #5
    Join Date
    Jan 2017
    Posts
    90

    Re: ALS and why you DON'T have it!

    Thank you Fishmanpa for being the voice of reason on this forum! Another good post, very reassuring.
    The main reason I, myself, have such a hard time accepting that my symptoms are benign is that my grandmother had it in the 80s, when there was little genetic testing (I mean one diagnostic test they did on her was drawing spinal fluid and that's not even a diagnostic method anymore (that I know of, unless they were ruling out other diseases) and I don't know that they did any genetic testing at all on anyone in the family. My mother's family is very large and very healthy so that is the only reassurance I have, but the fact that twitching is more indicative of familial than sporadic worries me.
    I do have my first doctor's appointment since all of this started in OCTOBER tomorrow! I am scared but ready to find something out. I am hoping and praying that I have a good outcome and of course I'll be adding to my original post for an update later but I do appreciate this community. I am glad to have an outlet for my fears and reassurance.

  6. #6
    Join Date
    Apr 2011
    Posts
    4,787

    Re: ALS and why you DON'T have it!

    Bump

  7. #7
    Join Date
    Mar 2016
    Posts
    377

    Re: ALS and why you DON'T have it!

    Here is a vote to sticky this post!

  8. #8
    Join Date
    Dec 2016
    Posts
    213

    Re: ALS and why you DON'T have it!

    Excellent post fish!

    So many reasons why anxious folk should ABANDON the ALS fantasy. However I am sorry to see the first "yeah but..." Response to your thread so soon. Oh how anxiety LIES to people.

  9. #9
    Join Date
    Aug 2013
    Posts
    20,880

    Re: ALS and why you DON'T have it!

    Quote Originally Posted by Sixpack View Post
    Excellent post fish!

    So many reasons why anxious folk should ABANDON the ALS fantasy. However I am sorry to see the first "yeah but..." Response to your thread so soon. Oh how anxiety LIES to people.
    I took it off the ALS support forum. It's sad to see all the posts from anxiety sufferers. The admins and members are incredibly kind and brave but they definitely know an anxiety sufferer when they see one and ban posters frequently. Many return under different names and are repeatedly banned. It's very sad to say that some of those posters are members here :(

    I saw the same thing on the cancer forums I was part of and that's how I ended up coming here. Stuck around to try and help. It strikes a nerve with me just due to the level of disrespect shown after repeated reassurance and kindness and shows just how selfish HA can be. You're right Sixpack, anxiety lies on many levels.

    Positive thoughts
    Last edited by Fishmanpa; 14-03-17 at 13:48.
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  10. #10
    Join Date
    May 2016
    Posts
    417

    Re: ALS and why you DON'T have it!

    Thats something I've thought about a lot recently.

    HA is incredibly arrogant and selfish.

    I openly admit that during the height of my ALS fear I would lurk on that forum but i never posted. Now i wouldnt even dream of logging on to it.

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