ALS and why you DON'T have it!

[melfish]

Read this, people. I think she might be related to you, Mel

http://www.independent.co.uk/life-st...s-1623649.html

Hahah, I just saw this, Vee ... she's probably a half-sister on my father's side

[AntsyVee]

Hahah, I just saw this, Vee ... she's probably a half-sister on my father's side

I knew it!

[Fishmanpa]

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

[Klinik]

Guys, thank you very much for this thread.. It helped a lot, i never seen a better and more comforting thread on the internet and unfortunately i have read many things about Als on the internet... Today i have neuroligist apointment and we will see.. I have noticed that many people fear of twitching of many random muscles on the body.. I on the other side ima afraid because i have twitches just of one muscle on the left arm for a month (no pain, no weaknes for now, age 29) Twiching of many muscles is most probably Bfs, but i didn't find any thread of long lasting twiching of one muscle without pain so that is why im deep deep in the Als rabbit hole :(

[nivs76]

Fishmanpa,

So glad I came across this thread. I thought I was alone in this rabbit hole. I have a question that I hope someone here might be able to answer..

"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." My question is...dont these start somewhere? As in, is the weakness gradual to the point where you cant do any of the above tasks or does it happen over night? I took comfort in the thought that neither applies to me BUT.. I do have severe weakness in legs, arms, lower back and abs (as if i did 100 squats, sit ups and and arm curls) my muscles are constantly shaking and tense. I noticed involuntary twitching everywhere in my limbs recently. This all started with a sore calf a little over a month now. I apologize in advanced if this has already been covered :/

I'm 41

[Fishmanpa]

The only way to know for certain is an EMG.

That being said, you only quoted a small portion. Read the rest.

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

[TruthIsThere]

Here is some things to think about if you are considering ALS as a possibility.

Please note that if you are worried enough to be here. You Should seek out a Dr. office and get his\her Advice. I am not qualified to tell you what you do and do not have. I am here just to help put your mind at ease with things I have found during my short venture down this rabbit hole.

If you feel like you are getting weaker in a muscle. That is not ALS. I have seen it asked. Well there has to be some muscle weakness before it just quits working. That is because people are getting confused. ALS attacks the nerves. This means that the nerves are not sending signal to the muscle. In most cases there are no signs prior. Your muscle is just as strong as it was before. Its just not being told to move. Like a remote control car. Everything can be turned on and have the ability to move but if unless you send the signal to that car from the remote it will not move. Your brains is the remote, Your muscles the car and nerves the signal. So if the muscle is slowly weakening that points well away from ALS. Clinical weakness is not a guess is very clear when you have it. You will not need to ask if it could be you will already know.

If what is going on is affecting your eyes such as vision problems or moving your eyes or even pain. That is a very big tell that is not ALS. One ALS affects the nerves yes but it is motor nerves. So most early stages you will not feel pain. that comes later when the muscles can no longer hold things in place. Second the Eyes unknown why at this point are very rarely if ever affected by ALS. As well I have seen and ready many cases online as well as DR. who specialize in this and eyes have never been the first symptom.

just quickly again. IF there is pain its points away from ALS. There are different nerves that control movement and another set that control feeling such pain. That Applies to touch, sound, vision hearing and taste. Those nerves are not affect and should not be bothered by ALS. IF those seem to be going that points away From ALS.

Twitching. It seems to be what brings everyone to these dark places on the web. when in reality it should not. Dr. google though says though it could be a sign. Yes it can be symptoms is ALS. But if it is full body this points away from ALS. As ALs from what I have seen and researched attacks one muscles group and moves to another and then another. So if you have full body twitching before any other signs. Then that points away from ALS. Many patients don't even notice the twitching they get it is pointed out by someone else. so rest assured that if the only sign you have had is twitching especially full body then it points away from ALS.

Lastly in an extensive study I was reading that was done on about 12,500 ALS patients in the US. One things that actually surprised me is the age. While true studies on age are a bit harder as not ever case is mandated to be reported. of those 12,500 patients only about 500 were under 40. that less than 5% of a disease that affects 1 out of 100,000. IF you are under 40 and you have no major signs of ALS then The odds are very very in your favor. in fact even though it does become more significant into your 40's it is actually uncommon for ALS patients to be under 50.

So please if you have found yourself down that rabbit hole that is the fear of ALS. Really do the research and seek a Doctor. It is a rare disease and the chances of you having it are very slim. So don't send yourself spiraling into a depression. It can be hard to get out of.

[hope_girl]

I had muscle twitching for weeks which started in my right arm at the elbow and bicep, then within a week miraculously spread to all over my body: legs, feet, lip, back, stomach... you name it. It sent me down a dark path that I'm still working on getting off of. One day after weeks of full body twitching (only when resting), I noticed some petechiae on my leg. If you don't know what that is, it is blood that has risen to the surface in little red dots. It can be an indicator of a bad disease. It took 2 days for it to fade away. It became the new obsession. It was all I thought of for an entire 24 hours. Curiously, the twitching seemed to stop. After the petechiae disappeared, I was so relieved and I thought; what happened to the twitches? I had taken notice of only a few random twitches throughout that time frame. I thought to myself, "They are gone!". But then something stressful occurred and they came roaring back. Now I'm back to the twitching.



Perhaps they never really went away and I just didn't notice them. Perhaps my body has lots of very tiny twitches when at rest on a normal basis (they are very tiny). Perhaps they did actually go away because I ignored them from being preoccupied with a new worry. Bottom line; it proves to me that it's my mind. We are connected mind & body. Ignoring symptoms and not being scared by them really does work. Though way easier said than done, and often done by the side effect of being worried about something else.



Regardless, I thought it interesting enough to share on this thread.

[LDHarv]

Thank you for this post and I’m hoping anyone else can put my mind at ease.

About three weeks ago my groin started to ache, I booked an appointment with my GP to have it looked at. Monday last week (so we’re 7 days in) my left leg started to ache badly, it was all day and it came on randomly. I made a note to mention it to my GP. Then I went down the Google rabbit hole and found myself in the ALS/MND area. I became obsessed and my serious health anxiety kicked in hard. On Wednesday my arm stared to feel numb and weak. This has progressed and now my left arms feels very heavy and weak, keeps flickering and now my two furthers left fingers feel very weird - numb, stiff and hard to move. I’ve also had random cramp in my right foot and other flickering. All of this over the past 7 days. I feel weak, this has all happened so quickly - last Sunday I was fine! This has mainly been in my left hand side of the body.

My GP said on Thursday that he didn’t know what was causing it but he didn’t think it was anything sinister. He’s booked some bloods in for Tuesday this week but said again he didn’t think it was anything to worry about. This hasn’t helped, this entire weekend I’ve been a mess and I’m really upsetting my wife. She has told me I’m fine, my mum has told me I’m fine and so has everyone else but nothing seems to work.

I have had panic attacks, lots of crying and been in a dark mood today. I have had health anxiety for many years now, it comes in peaks but I’m worried on a daily basis of death. This has been since I was a kid.

I’ve got another GP appointment this Thursday but feel like I need to see someone ASAP. I’m 29, have an amazing daughter and wife and she’s pregnant again. I am normally a happy person and don’t get down or anxious about anything. I just keep searching on the internet and convincing myself it could be something bad.

Any support, thoughts or links welcome. Just want to know I haven’t got ALS/MND and this is just health anxiety.

Thanks again and sorry for the long message. The first post in this thread was really appreciated.

[dmc1892]

Today I read about a football player who had been diagnosed with ALS/MND and my anxious mind started to think all of these negative things but once again I came to this post and it really does take away any anxious or negative feelings .

I urge all people worrying to read this . It’s in black and white