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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
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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.
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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. :)
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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.
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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.
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Re: ALS and why you DON'T have it!
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Re: ALS and why you DON'T have it!
Here is a vote to sticky this post!
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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.
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Sixpack
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
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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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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Fishmanpa
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
Yes I knew you had gotten this from an ALS forum. It is pretty darned sad that an ALS forum has so many people erroneously believing they have it coming there, that there is such a STICKY posted on the site. It should be a GIANT wake up call to those going on the forum seeking reassurance about a disease they do not have. Sad thing is--as good as the thread is--it will not dissuade most of those folks from the ALS fantasy
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Re: ALS and why you DON'T have it!
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Re: ALS and why you DON'T have it!
furthermore, wondering if you might just have bulbar after getting your arms/legs cleared is PART OF THE NEUROSIS!
You're thinking that it's this terrible possibility no one else ever came up with, when you're just reaching a new level of the stupid rabbit hole.
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Re: ALS and why you DON'T have it!
This is a great post. Very helpful.
The only part of it that makes me anxious is the hyperreflexia. I've not had a reflex check since my physical last year. I tested the my own and they seemed brisk. Granted I'm not a doctor or medical professional
If I don't have weakness with my twitches should I worry about reflexes and make an appointment or just let it be?
Thanks
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Re: ALS and why you DON'T have it!
Anxiety can cause brisk reflexes. Hyperreflexia in ALS is very noticeable . You'll have one leg shoot up like a jack in the box. Seeking reassurance is unhealthy when it comes to anxiety, but sometimes it does help. I would say no, but sometimes not doing it puts an individual in a manic state. Twitching isn't not ALS, so I would just let it be.
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Re: ALS and why you DON'T have it!
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Re: ALS and why you DON'T have it!
I'm not proud to say but I've posted on the als forums, The feelings of shame and guilt definitely manifest and to be honest perpetuate my health anxiety. I've got a few more symptoms than just twitches and while my PCP is not remotely concerned about MND/ALS he had still referred me to a neurologist due to my concerns. This appointment is in a few days at a world renowned MND clinic and I'm hoping that the neuro will give me some positive news. My PCP is amazing and has been a great support through this whole ordeal.
The likelyhood of a 31 year old with no family history having this terrible disease in quite remote however when your on prescribed meds like Valium and mirtazapine and suffering with severe health anxiety which has only properly manifested in the last 3 months it can really knock your body around.
There are some very helpful people on that site and I agree that if your only symptoms are twitching then do not waste their time and keep well away from that site, it will only make your more than likely somatic symptoms worse. If you've have a clean EMG and the all clear from the neurologist then stop wasting their time and move on with your life or try to find the true cause of your symptoms.
This might help some people as a coping mechanism. I have a calendar at home on my wall, every day I add a sticker to each passing day to signify time passed without a FAIL not a perceived weakness or fatigue a FAILURE. Remember it's not a sensory disease it's an inability to do something no matter how hard your try.
Also Bulbar onset stats are skewed to the older onset and also older females.
Actual stats on als according to the CDC for 18-39 is 0.6/100,000 or 6 per million, I believe this age bracket is overly represented by vets and familial MND/ALS
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Re: ALS and why you DON'T have it!
BUMP....
Just due to all the twitchy, ALSy, MSy posts....
https://media0.giphy.com/media/ctYlY...W4/200.webp#29
Positive thoughts
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Re: ALS and why you DON'T have it!
I am literally in the waiting room to see a GP over burning pins and needless in my arms, aching legs and twiches and I must say this post has just helped me a lot
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Re: ALS and why you DON'T have it!
Fishmanpa:
Would you mind sharing how you came about the facts/knowledge in the original post? It's comforting information for me, but I'd like to know how credible threat info is. Thanks!
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Kcguy2017
Fishmanpa:
Would you mind sharing how you came about the facts/knowledge in the original post? It's comforting information for me, but I'd like to know how credible threat info is. Thanks!
It's taken from the ALS forum. It's credible.
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Re: ALS and why you DON'T have it!
what about cramps and spasms? are they too later on, like twitches? or no significance? Lately ive been getting off and on spasms that can hurt.
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Re: ALS and why you DON'T have it!
Did you read the post?
Right at the top: ALS is about failing, not feeling.
Positive thoughts
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Josh1234
It's taken from the ALS forum. It's credible.
Thanks for the response. And I'm really not trying to argue or discredit what you wrote. I didn't understand at first that you had literally copied/pasted the words of someone with ALS. It's just that, as you probably know, once you get into this spiral of worrying about symptoms, it takes a lot to turn things around. It seems like people's experiences with ALS can be fairly diverse. And your post seems so black and white. I read one article where a man said looking back, his first symptoms were that he wasn't able to lift as much weight at the gym. It wasn't a total fail. Just gradual diminished strength. I do hear you, though, and although I haven't been to the Dr. yet about my symptoms, I'm fairly certain they won't find any objective weakness. And my twitches started a couple of days after I got concerned about my left hand feeling weak and stiff. Now the twitches are all over my body. I know that's not particularly consistent with ALS either. Unfortunately fear isn't always rational. I do appreciate you taking the time to write the post. I just need to convince myself it really applies to me.
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Re: ALS and why you DON'T have it!
that's the part that worries me the most, KC. Diverse. Ive had my symptoms for 8 months off and on, so usually by now it should be obvious. But of course, you read articles that say something like "it took me X long to get a diagnoses" and it makes you panic.
I guess the important thing to note is, all diseases are diverse. Some people trip and fall, and end up with MS. Some just end up with "I'm clumsy" and no real disease.
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Kcguy2017
Thanks for the response. And I'm really not trying to argue or discredit what you wrote. I didn't understand at first that you had literally copied/pasted the words of someone with ALS. It's just that, as you probably know, once you get into this spiral of worrying about symptoms, it takes a lot to turn things around. It seems like people's experiences with ALS can be fairly diverse. And your post seems so black and white. I read one article where a man said looking back, his first symptoms were that he wasn't able to lift as much weight at the gym. It wasn't a total fail. Just gradual diminished strength. I do hear you, though, and although I haven't been to the Dr. yet about my symptoms, I'm fairly certain they won't find any objective weakness. And my twitches started a couple of days after I got concerned about my left hand feeling weak and stiff. Now the twitches are all over my body. I know that's not particularly consistent with ALS either. Unfortunately fear isn't always rational. I do appreciate you taking the time to write the post. I just need to convince myself it really applies to me.
If someone is able to lift 100 pounds at the gym for 20 years then suddenly one day, they can't lift 100 pounds, they can only lift 50, is that not failing? Yes, it is. He failed to do a task his body can easily do for years (lift 100 pounds). In ALS quick paralysis does happen, but also a more gradual loss, but make no mistake, it's not subtle. Losing 40 to 50% of your strength overnight is a big deal.
When discussing diseases of the body, we go by what the overwhelming consensus says the pathology is. Fixating on an isolated case or two is what hypos do. :)
---------- Post added at 16:22 ---------- Previous post was at 16:18 ----------
Quote:
Originally Posted by
BazB44
that's the part that worries me the most, KC. Diverse. Ive had my symptoms for 8 months off and on, so usually by now it should be obvious. But of course, you read articles that say something like "it took me X long to get a diagnoses" and it makes you panic.
I guess the important thing to note is, all diseases are diverse. Some people trip and fall, and end up with MS. Some just end up with "I'm clumsy" and no real disease.
Taking a long time to get diagnosed =/= having zero symptoms in that time frame. It can take months in between appointments to neuromuscular specialists, and when you give someone the death sentence of ALS, you make damn sure you've ruled EVERYTHING else out. That's why the diagnosis process takes so long..
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Re: ALS and why you DON'T have it!
Ugh. I was stupid and just read a bunch of posts on an ALS forum. I was doing so much better (mentally), and now I'm back to freaking out. Here's the really stupid thing. I can score a 10/10 on this sitting rising test (look it up on Youtube, I can't link it) and I haven't noticed any trouble lifting or squeezing things. Just some problems with my left ring and pinky fingers and perceived weakness and twitches all over. Irrational fear is a bi*^h.
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Re: ALS and why you DON'T have it!
I mean, I don't think there are 100% hard and fast rules about ALS, but there are general trends. It's generally a disease of older folks that moves fast. We *know* from the internet that there are plenty of benign nervous twitchers out there. Given this, do you *want* to worry for months that you are the exception to the rules? I mean, my therapist was talking about someone who feared getting hit by a car that veered onto the sidewalk. This person fears walking around. Is there 0% chance this could happen? Of course not (in fact it might be more common than ALS!) Is this person hampering their freedom with this intrusive worry? Of course!
Sometimes it's easier to see the pattern of thinking when it's not "your" worry. I suggest listing things you have feared in the past to establish your obsessive nature.
I have the ALS fear and I actually *have* muscle wasting (from a much more benign--though rare--genetic condition). But I'm trying to combat the intrusive fear and remember I have another diagnosis.
In your case, remember that nervous twitching is very common.
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Kcguy2017
Ugh. I was stupid and just read a bunch of posts on an ALS forum. I was doing so much better (mentally), and now I'm back to freaking out. Here's the really stupid thing. I can score a 10/10 on this sitting rising test (look it up on Youtube, I can't link it) and I haven't noticed any trouble lifting or squeezing things. Just some problems with my left ring and pinky fingers and perceived weakness and twitches all over. Irrational fear is a bi*^h.
Dude... that has to stop! Don't go reading there. And please, don't join and post.
There's a positive in that you recognize how irrational you're being. The key is to convince yourself of that fact. You see, there are absolute facts that eliminate the irrationality.
Let's look at an analogy.... You go to the store, get a fresh cut of beef and some sides, go home and cook it up, sit down to eat and start worrying that the cow they got the beef from maybe had mad cow disease and you might get it from eating the beef (which is impossible).
So... taking into consideration of all that's known about ALS and the overwhelming majority of case studies compared to your symptoms and the chance is equally impossible. That, and the fact you're posting on an anxiety forum so somewhere under the cloud of anxiety, you know you don't have ALS.
Positive thoughts
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Re: ALS and why you DON'T have it!
I wonder what the top 10 dieases that those of us with health anxiety fears. Seems like ALS is very high up. Think pancreatic cancer is high on the list aswell. We do fear the worst of the worst.
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Fishmanpa
There's a positive in that you recognize how irrational you're being. The key is to convince yourself of that fact. You see, there are absolute facts that eliminate the irrationality.
Positive thoughts
This is that part that is hardest to me :weep: Being irrational was never a worry for me. I've always excelled in logic. Majoring in Physics and Math. Well read in philosophy. Great debater. All of the sudden I can't convince myself of something that is so obvious to everyone else. That I am a perfectly healthy kid! Er.. perfectly healthy young adult :shades:
It is ridiculous to me that I'm having so much trouble with this.
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Fishmanpa
Dude... that has to stop! Don't go reading there. And please, don't join and post.
There's a positive in that you recognize how irrational you're being. The key is to convince yourself of that fact. You see, there are absolute facts that eliminate the irrationality.
Let's look at an analogy.... You go to the store, get a fresh cut of beef and some sides, go home and cook it up, sit down to eat and start worrying that the cow they got the beef from maybe had mad cow disease and you might get it from eating the beef (which is impossible).
So... taking into consideration of all that's known about ALS and the overwhelming majority of case studies compared to your symptoms and the chance is equally impossible. That, and the fact you're posting on an anxiety forum so somewhere under the cloud of anxiety, you know you don't have ALS.
Positive thoughts
I wouldn't post there. The last thing I want to do is bother people who have been diagnosed with ALS. And I don't go there first and start reading posts. I google something and end up there. Still stupid, I know.
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Re: ALS and why you DON'T have it!
I've never been to the ALS forum so I have never seen that post.
Seeing this has made my day though and allayed a lot of my fears over ALS.
Thankyou thankyou
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Re: ALS and why you DON'T have it!
I am still going through my fear of it, i have had twitching all over my body, had two emg/nvc 5 months apart , emg came out clean the ncv came out lousy proving some kind of neuropathy or lumbar entrapment, i have both and still obsessed with als and other obsesssed disease pancreatic cancer i obsess over that after alamost dying from necrotic pantcreatitis
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Re: ALS and why you DON'T have it!
One phrase that helps me in all phases of anxiety (health and otherwise) is:
Possible but not probable.
I'm currently dealing with another twitch related ALS anxiety and this phrase does help me put things in perspective.
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Re: ALS and why you DON'T have it!
I, myself am having this ALS fear...i didn't think anything of the twtiching before bc i was obssessed with having a DVT and Ovarian Cancer due to back and leg pain...but now twitching has been going on for almost 2 months...not constant but there...now its localized in my left ankle UGH!...i made myself NOT look up anything on the internet...even WebMD for the week and see if this lowers my anxiety.
Reading this a few times has calmed me down a bit...not sure if anyone read this...but even if I re-read it, it does help me...(even makes me forget i have twitches). It's about a doctor who was convinced he had ALS even though the 3 Neuros had told him he didn't have it .
*****here is the link:
https://www.theguardian.com/news/201...own-doctor-als
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Re: ALS and why you DON'T have it!
Thanks I am going through a worry over ms/als/mnd.
Had loads of twitching today ever 5 to 10 mins all different part of body but mostly on right upper thigh/groin .
Is this anxiety again ?
Ellie
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Re: ALS and why you DON'T have it!
Hello from the US!! I found this post a couple months back when my spiral down the ALS rabbit hole began. I did a Google search for "why you should stop worrying it's not als" :D and this was the 2nd thing that popped up. I read the post every few days to try to relax myself. Today, I felt like responding because it's been a rough few days of symptoms getting worse.
I am a 29 year old woman. The odds of me having ALS without family history are infinitesimal. I do have some symptoms (that I will not list because they are not worth worrying people over) and have been to the doctor who is referring me to a neurologist. My symptoms don't seem to look like ALS to my GP. Actually, she thinks it might be MS which is a far less scary disease.
Thank you for this post. I can't imagine what it would be like to have ALS and then have people (dozens or hundreds of them) asking you for help because they're scared they have it too. Health anxiety is a terrible thing that people can't control, but that is no excuse for badgering actual ALS patients.
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Re: ALS and why you DON'T have it!
Quote:
Originally Posted by
Jett81013
Wow that's a beautiful article.
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Re: ALS and why you DON'T have it!
I have never been afraid of having ALS and probably never will.
But it is interesting that many fear they have it because of twitching. Could it be that these twitches are part of a panic attack? I shiver a lot when I have panic atacks and I have had those for 20 years.