Old 09-01-2014, 01:18 PM #1 (permalink)
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Default READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Do I Have ALS?
First, in spite of the name of this section this 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

Special note on assessing bulbar function: The most common areas EMG'd to assess bulbar function are under the chin or the sternocleidomastoid. If either 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 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.

What It Was When It Was Not ALS
Most people on this subforum, when it is not ALS—and it usually is not—end up with BFS and/or anxiety but there are a lot of other diseases, neurological and not, that have led people here.

Chiari malformation
Myasthenia gravis
CIDP
MMN
Mitochondrial disease
Isaac's Syndrome/neuromyotonia
Charcot-Marie-Tooth
Multiple sclerosis
Guilllain Barre Syndrome
Heavy metal poisoning
Medication reactions
Post viral syndrome
Lyme disease
Fibromyalgia
Cancers of various descriptions
Kennedy disease
Small fiber neuropathy
Parsonage-turner Syndrome
Spinal disorders
Thyroid disease
Diabetic neuropathy
Vitamin deficiencies
Vitamin toxicities

Some of these are extremely serious. Only your health care team is going to be able to sort it out. Ask them what your symptoms could be and if you need any tests to find out. Let the doctor figure it out. On this forum, we can only tell you if your symptoms resemble our experience of ALS. If we say it does not, please don't continue to ask us. Go back to your physician with an open mind and let him/her figure it out!

When You’re Wrong
When you’re wrong and we tell you it doesn’t sound like ALS, don’t fight with us, find new symptoms or try to re-explain your old symptoms. Fighting with us to prove you have ALS, or wanting to have ALS is a sign of a psychological problem that we can’t help you with on this forum.

Keep an open mind...

Finally…
ALSForums.com is a site for PALS (people with ALS/Motor Neuron Disease )and CALS (caregivers for someone who has or has passed away from ALS/MND).If you do not fit in one of these categories, then you are only a guest here.

Remember we are not doctors or diagnosticians, so we will not diagnose you, but can only tell you if your situation sounds like our experience. We are also people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading and replying to the anxiety-ridden can be very tiring. So we must ask you to carefully compose your post, do not just ramble; please create paragraphs and include salient info on age, sex, what the doctor you saw said, the exam findings and test results and clearly state your questions.

Also please stay on one thread do not start multiple threads if your original thread is still open post any follow up there. New threads may be deleted without notice ( remember this a second thread will just disappear)further repeat offenders may be banned;

do not hijack other people’s threads or otherwise post outside your own thread ( this includes questions or advice to other undiagnosed people) and, as a guest, please confine your questions to the DIHALS area.

Please remember also that PALS expend considerable effort in answering you. If you have received a sincere reply even if it seems brief it is polite to say thank you; a group thank you is fine if you received several replies. It is disheartening for us to take time and energy only to be ignored

Please also be considerate of PALS and CALS. Some choose to answer some of the DIHALS threads as a kindness. Some find the subforum distressing. If someone has not answered you on your thread they probably do not want to address your issues do not contact them directly via private message or visitor message. It is generally felt to be an intrusion when a message is sent by a DIHALS. If someone has answered you on your thread please if you feel the need for follow up questions ask them there on the thread

Also, old threads are a great way to learn more, but when you read old threads and get panicked, please check to see if the person who made the post actually was diagnosed with ALS at the end. Your symptoms may be exactly like those of JoeBlow123, but it may turn out JoeBlow123 had a treatable radiculopathy or anxiety.

Finally, when we have answered your questions and it is not ALS or another motor neuron disease, it’s time to leave.

Last edited by Nikki J : 08-30-2018 at 06:04 PM
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Old 09-29-2015, 01:16 PM #2 (permalink)
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Default re: READ BEFORE POSTING! Contains answers to common concerns about possible symptoms!

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