View Full Version : 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
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.
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. :)
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.
Mommyof2boys
14-03-17, 00:09
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.
Here is a vote to sticky this 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.
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
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.
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
tryingtosurvive1
15-03-17, 04:41
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.
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
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.
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
BUMP....
Just due to all the twitchy, ALSy, MSy posts....
https://media0.giphy.com/media/ctYlYideDlGW4/200.webp#29
Positive thoughts
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
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!
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.
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.
Did you read the post?
Right at the top: ALS is about failing, not feeling.
Positive thoughts
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.
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.
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 ----------
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..
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.
tryingtosurvive1
11-06-17, 04:47
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.
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
paranoid-viking
12-06-17, 00:00
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.
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.
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.
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
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
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.
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/2016/aug/04/perils-being-your-own-doctor-als
Elliejane44
28-09-17, 19:56
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
EllieBee88
06-10-17, 18:36
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.
*****here is the link:
https://www.theguardian.com/news/2016/aug/04/perils-being-your-own-doctor-als
Wow that's a beautiful article.
paranoid-viking
30-11-17, 17:02
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.
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.
No. They are not part of a panic attack and they are nothing like shivering
paranoid-viking
30-11-17, 17:34
No. They are not part of a panic attack and they are nothing like shivering
OK? But I get muscle spasms when I have panic attacks.
No. They are not part of a panic attack and they are nothing like shivering
That is true. But they are dead common. Everybody gets them but most people hardly notice and never worry (I have it on good authority) :hugs:
That is true. But they are dead common. Everybody gets them but most people hardly notice and never worry (I have it on good authority) :hugs:
Yep!
---------- Post added at 10:58 ---------- Previous post was at 10:30 ----------
OK? But I get muscle spasms when I have panic attacks.
What's that got to do with the price of fish? You said you don't fear ALS and obviously don't have twitching, so your dismissive comments aren't really helpful to those in the throes of this
What's that got to do with the price of fish?
Frankly everything. Twitches, spasms and a plethora of other physical symptoms are common in stress biology. If you go back and read the first post I made on this thread, that alone is enough to dismiss your fears, especially taking into consideration the amount of time that has passed since the symptoms manifested themselves.
I know first hand how stress affects one physically. Between my real illnesses and dealing with what happened to my wife, I had a laundry list of stress related physical symptoms including twitching. Thing is, I don't suffer with HA and I knew exactly what was causing it. As things calmed down, so did the physical reaction to them.
Positive thoughts
paranoid-viking
30-11-17, 19:20
Yep!
---------- Post added at 10:58 ---------- Previous post was at 10:30 ----------
What's that got to do with the price of fish? You said you don't fear ALS and obviously don't have twitching, so your dismissive comments aren't really helpful to those in the throes of this
OK, sorry. It was a language misunderstanding though. I thought "twitches" was the same as spasms or shiverings. My bad. I am not a native English speaker.
edit: I really dont understand the big difference between twitches and spasms. It has to do with muscles being stressed anyway.
Read this, people. I think she might be related to you, Mel ;)
http://www.independent.co.uk/life-style/health-and-families/features/cyberchondria-the-perils-of-internet-self-diagnosis-1623649.html
Read this, people. I think she might be related to you, Mel ;)
http://www.independent.co.uk/life-style/health-and-families/features/cyberchondria-the-perils-of-internet-self-diagnosis-1623649.html
I AM CATHERINE !!:blush:
---------- Post added at 09:08 ---------- Previous post was at 09:00 ----------
It's posts like this that really make me love this forum. Thank you for the link! Xx
Hi,
This is kind of helping me with my anxiety. So thanks for that. I just need to think 38 is unlikely to get ALS without muscle weakness and twitching in lots of places makes it even less so. Doc said my reflexes were super normal although a few days before my friends kept saying your twitchy but I was super stressed and ill.
I just don't get this burning pain I am getting on the muscles. I had terrible flu 4 weeks ago wonder if I am still recovering from that.
Thanks anyway.
Mike
The Als / mnd rabbit hole is a nightmare! , I’m sure that many people will get reassurance from this post that will help , unfortunately though for many people suffering from health anxiety who fear this disease , no amount of medical reassurance works ( and this was certainly me ! ) I spent a year of my life scouring medical info , reading literally every post on the BFS site , trips to doctors , a neurologist and this didn’t help me , the anxiety makes you twist facts/ reality and not process information in he same way that someone without extreme anxiety would . I could have seen the biggest expert in the field and I know I would have come away reassured at first then the doubts would have started , words they had spoken twisted etc . I remember on my neurologist report it read there are no signs of MND , I twisted this into a negative -“ there are no signs yet etc !!”
For those of you not to deep in it , medical info / reassurance I’m sure will
Help , but those deep in it with health anxiety my advice would be try and break the reassurance cycle and focus on tacking the health anxiety , very very hard but doable!
Read this, people. I think she might be related to you, Mel ;)
http://www.independent.co.uk/life-style/health-and-families/features/cyberchondria-the-perils-of-internet-self-diagnosis-1623649.html
Hahah, I just saw this, Vee ... she's probably a half-sister on my father's side :roflmao:
Hahah, I just saw this, Vee ... she's probably a half-sister on my father's side :roflmao:
:roflmao: I knew 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
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 :(
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
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
26-05-18, 22:56
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.
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.
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.
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
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
Couldn't agree more!
Just went down the dark health anxiety hole again. Had my second GP's appointment today (after a blood test) and was around anxiety and the symptoms I've been experiencing. Basically, she didn't even examine me, should told me I don't have MND (ALS) and to stop thinking that. I've just started taking one Sertraline a day (anyone else?) and booked myself in for come CBT.
I came out more positive, second GP to tell me I don't have MND/ALS and that they weren't worried at all. Then I started worrying again for no reason, thinking about MND/ALS, thinking about early death, thinking about the terrible news from the footballer who is the same age as me and all things that come with that. I did some googling and read two articles, one saying that he first sign she had was aches in her arms and found it hard to lift things and the other talking about stiff fingers. Then it starts again, logic goes out of the window and the anxiety kicks in.
Hi LDHarv I have just registered with this site to reply to you, I have many symptoms of mnd and like you am here looking for reassurance that it’s not it, my anxiety has been extreme and I have a neurology referral next Friday and the closer it gets the more anxiety I’m suffering, and simply can’t believe that my symptoms could all be anxiety related, I’ve had symptoms since May and in June I too was put on sertraline and propanalol for anxiety, the reason I wanted to reply to you is because soon after I started to take them I went into a very dark place I was extremely low and so fatigued to the point I was going to stop taking them, I have 4 children and a partner that I hated seeing me that way, I believe it was a result of the tablets and after a couple of weeks i seemed to pick up from the lull and actually started to feel a bit better in myself, although still dealing with the symptoms I seemed to be able to not think about it all so much, the brain is an incredibly powerful tool and if you believe you have something enough you will start to show these symptoms, I think I need to listen to my own advice a bit more. I am a member of an mnd page on Facebook and found this to increase my anxiety I was looking for answers in the wrong place from people who have this awful disease rather than reasearching anxiety and the physical effects this can have on your body, I totally get what you mean with logic going out the window some days I totally rationalise my symptoms and am not able to think about it and other days I’m a mess thinking I’ve only got 3 years left with my babies, just remember we are young adults and look how many of us there are out there going through the same experiences falling into the same hole, health anxiety is very scary and it’s good to share experiences to know we are not alone xxx
Thank you for the reply and advice, it’s super appreciated. I had a rough morning as well (woke up feeling awful) and had a break down, lots of tears and feeling of helplessness. This post and this forum has made me feel slightly better. Thank you.
Hi,
My name is Jack and I have been living with the ALS fear for the last couple of months. I am 27 and had a very hectic spring with a lot of extra stress being brought into my life. Anxiety does run in my paternal family.
This venture all started in June with a slight left eye twitch that I blew off as nothing, followed by bouts of dizziness, uncoordinated feeling, and odd sensations while putting my body under heavy physical exertion. (Shakiness, feeling noxious) After 2 instances I went to the GP where I was given several blood workups, and different things to try to solve the dizziness issue. (Allergy meds, meds for BPPV) I was then confronted with a doctor who was nervous about my low pulse rate, 43-45 BPM. I am very active and run and lift weights a lot and have always maintained a low heart rate. I was given a cardiologist appointment 3 weeks from the date. (July 10th) I was extremely worried as the doctor suggested cardiomyopathy. I had a Holter monitor for 2 days, echo cardiogram, trach, and stress test with no negative results. I felt relieved but my symptoms and health anxiety persisted. I began to twitch in my left calf. I immediately googled this symptom and instantly regretted in. I found ALS/MS/BFS/Peripheral Nephropathy among other things. Since then the twitching has spread to the majority of my body. By August 15th I was very worried about the potential of ALS and began to feel even more uncoordinated, especially in my left hand. I have since went to a Neurologist (Sept 14) who did not suggest any reason why I should worry but ordered an MRI. I asked about ALS and the Nero had a hard time easing my mind due to a language barrier. (An Indian Fellow) I still have no clinical weakness in my left hand/arm but it still feels uncoordinated and twitches frequently. It also seems to burn a bit and feels slightly numb at times. My left hand, triceps, and shoulder seem to twitch and fatigue easily. It feels "tired" while doing minor tasks such as holding the steering wheel or carrying out 3 month old daughter. I am also frequently clearing my throat though it could be unrelated.
I know I am rambling a bit but this fear of ALS has slowly began to affect my life more and more and with military insurance, seeing a doctor can be tough. I am still working to get an MRI soon and will ask for an EMG on my left arm.
Any thoughts would be great,
Jack
Any thoughts would be great
Did you read the original post? Everything you posted points away from this illness. ALS is about "failure" not "feeling".
Positive thoughts
Blue23Blent
24-09-18, 19:11
True.
Iv been to my doctor twice worrying about als. The second time she checked all my limbs and looked for any muscle weekness which she said there was no sign of any.
She sent me for a vitamin d blood test which i believe can show signs of muscle weekness.
Since then iv been to A & E twice. First time the doctor again tested all my limbs and make me do a number of tests such as standing on one leg. She also made me drink a glass of water and made me move my tongue. She also asked if i had excessive saliva which i do. She didnt seem to have any worries about als and sent me on my way.
I again ended up in A & E again a few days later worried i again i had als because i was having twitches and stumbling when walking. Also pain in one foot that moved to the other and then all over my body.
Iv not fallen over at any point. The doctor i saw this time didnt examine me and said that was just suffering with anxiety.
Iv also been getting out of breath easily the last few monthes and was getting out of breath walking up stairs. The doctor listened to my lungs and said they were great giving me a score of 98 out of 100.
The last few days iv had excesive saliva that seems to have gotten worse as well as a croaky voice at times. My lips also keep tingling and twitching. When drinking a drink after swallowing it feels like i am drooling. Iv also had a really dry throat with what feels like a metallic taste in my mouth. Sometimes when talking to people it feels like my mouth is filling up with saliva.
For the last few months sometimes my voice would randomly break. This hasnt happened much recently though.
I can move my tongue and whistle.
My anxiety is going through the roof at the minute.
Chances of getting ALS before 40 are very small, according to most studies in the US and Europe only around 0.3 per 100.000 people get it (or even less)
This post really helped me to relax a bit...
trheiress0305
26-12-18, 01:41
I just wanted to give everyone here some insight into my past and current ALS infatuation. I’m a 30 year old, former athlete, white male... in other words (aside from age), a prime suspect for your typical ALS patient. I’ve struggled with all of the same symptoms that I’ve seen listed by many of you. But, I also happen to be incredibly good at math. When my ridiculously hyperactive mind goes to ALS I remind myself that 4-6% of cases happen before the age of 40, and our normal chances are already roughly 2 in 100,000. Not to bore anyone with the actual number... But we are all way more likely to die from some pretty crazy situations other than ALS. So, when my thumb looks smaller than the other or when my legs feel like jello or my eye won’t stop twitching for 3 days straight, I think about the actual numbers and what my neuro always tells me... what’s rare is rare. Sometimes it helps, but others it doesn’t. I test myself like crazy. I google, I research, I do EVERYTHING I am not supposed to do... but I’m the end it always subsides eventually. Sometimes it’s days, minutes even. And other times it’s months.
Hi all, I've joined NMP and hoping you guys can help me please, I'd be really grateful.
I'm 29 and have suffered with anxiety on and off for a long time. Mostly health anxiety. This was made worse by my daughter being very ill as a baby with a very rare heart condition (I have PTSD from that too). She's doing well now thank goodness...
Late November, I had a strange thing happen where I woke up with numbness, tingling and parasthesia from waist down, along with a strange tight feeling in my very lower back. It was very sudden. Then I began to feel generally weak and dizzy, and my left leg was weaker than my right according to a physio. Physio also said I was generally quite weak, but did say my muscles were engaging, just not very strong. I must be quite unfit to be honest. Reflexes were normal. The sensation slowly and mostly returned to normal, then came the muscle twitches and cramping (cramping gone now) and burning pain and tightness in legs and hands (hands in the outer halves, ring and pinkie finger areas so the ulnar nerve areas). I also had a strong banding feeling around my torso for about ten days. GP says it was most like some kind of inflammatory/autoimmune attack. My white blood cell count was high and has now come down. I also have hypothyroidism and low vitamin D. There are plausible reasons which explain it all but I cannot stop worrying about ALS. I know you guys can relate. I'm sorry you've been going through the fear too.
I was actually doing ok on the whole but then it only takes the tiniest piece of information to scare me into oblivion again... for example - last night I somehow ended up reading an article about a young woman diagnosed with MS, and she presented with numbness and tingling in her feet and legs. In the article, they said that at the hospital they tested her for ALS... cue tailspin... cue me searching can numbness and tingling be an ALS symptom. Many (including official ALS sources) say it can't but I found one site and one article where it said yes they can and now I'm freaking out. This is awful, and I'm barely functioning with worry. Then I start getting a tight feeling throat, ugh.
I have been gradually improving, and I seem to feel worse when I'm stressed and tired. The tingling makes a return when I'm stressed and anxious. Especially if I bend my neck forward. The pain in my legs today is pretty bad. And pain in my hands and fingers, although I can move my hands normally. The ulnar nerve area has remained very tight feeling, fingertips have like a burning pain as I type. I slept four hours last night because I was googling from 3am until half past 5...! The weakness, pain, twitching and tingling seems to be worse if I'm tired.
I might have had something called Transverse Myelitis apparently. I have been a bit worried about MS but nothing is scaring me more than ALS. But the presentation isn't right is it? I mean has anyone with ALS ever woken up one day with symmetrical widespread numbness and tingling, and that's how they presented. I keep asking myself these questions but the anxiety is just overriding everything.
Sorry I know this is long. Thanks so much for reading.
I think you need to read the main post on this thread again.
Oh, and quit Googling, it'll only make you more afraid and unhappy. I speak from experience here.
I think you need to read the main post on this thread again.
Oh, and quit Googling, it'll only make you more afraid and unhappy. I speak from experience here.
Thanks, BlueIris. I did have another read of it on your advice. Until I feel totally normal again I don't think I will be able to fully stop worrying : ( I have started seeing someone about the anxiety and PTSD now, all of this has kind of made me get around to that finally.
I'm trying to remind myself that there are a few plausible (not terrible) reasons for my recent health issues. And that most people could probably get scared about ALS if they looked up the symptoms. Oh I didn't mention that I've had a neurologist tell me not to worry about it, he wasn't concerned, this was during a visit to A&E in mid December, I was advised to go because of the widespread sensation loss etc. They thought I might have an emergency spinal situation (Cauda Equina Syndrome)
Trying to use other examples too e.g. a few bad headaches doesn't equal a brain tumor in 99.5% of cases. Wow this is so hard. Am very open to advice and words of wisdom from others, if you have the time and emotional energy to help (I know how energy sucking anxiety can be, sometimes it leaves me physically exhausted.) The twitching and aching is pretty bad today, I'm going to go for a walk after lunch.
Hi There
Ive been going through this for about a month now, it started off i got a numbness down my left arm and of course i went to google and ALS came into mind because its a very big fear of mine, Within a week symptoms of tingling all over my body like EVERYWHERE along with numbness, left arm feels like its not there, I feel like i am shaking inside, sometimes it feels like Im floating when im walking like the sensation is gone in my legs, ive a constant lump in my throat and it feels like when i grab it it clicks, under my tongue feels like its swollen all the time and is kinda painful, im getting pains everywhere especially in my thumbs, hands, wrists, arms, back of my neck and shoulders and feels like my bones are creaking and wake up stiff. Ive been to the doctor 3 times all being cleared of stuff like ALS, MS, Vitamin defiecency and arthtitus. Like even when I was scrolling through here my thumb was going crazy on the mouse.I keep lifting things, clenching my fists really hard, jumping up and down really high, all just to see if I have strenght still, Im 23 and I just want to know is all this normal with this anxiety like can everything litterally just come upon me within a few days. I see that things wrote on this is a bit old so hopefully There is somebody that can help me ive never felt anxious really about anything and never seen myself ever being like this Ive stopped playing sport as like I actually cant see myself being able to so I really need to beat this quickly. Thanks :)
nmpburgerking
18-09-19, 01:25
Hi all, just joined this forum today after seeing this post. Been suffering from HA for the past 6-8 months and I've been through all different types of cancers, hypoglycemia, tumors, etc... (for reference, I am a 23 year old male)
ALS seems to be the scariest disease to shake because it's so random. I get that it's incredibly rare but when you factor in the occurrence rate in different areas (my city, state, country, etc), it comes up with some scary numbers. Also doesn't help that I've indirectly known two people who have died from ALS, one who was a year older than me when he passed away.
For now, my biggest fears to be in nerve pain and numbness, almost carpal tunnel like symptoms (which is probably much more probable as I type a lot for my work). Glad to have finally joined a community where everyone understands the struggle.
MMmmmmmm....Burger King....
:welcome:
A very good read and has helped me a little!!
I have been suffering with twitching in different parts of body which prompted me to look up on Google!! Bad mistake and I'm down the als rabbit hole and in very deep!!
Twitching been going on 5 weeks now so went back to see Dr today, who very kindly said 'oh that could be motor neurone disease', great thanks doc!! Not the best thing to say to someone who suffers with Health Anxiety!!
I do suffer from MS but he said the twitching wasn't associated, so I am very worried. He tested leg strength today because I have back pain too. I see my MS nurse in three weeks time, which is ages away and I can't stop the thoughts that I may. Have Als. Twitching is felt in right foot, calf, butt, neck and stomach, the odd twitch on the left side. Please any advice. Many thanks
venusbluejeans
03-01-20, 12:23
It might be better if you start your own thread on your worry... people may not see it here
Hi emmz
Thankyou for replying!! I have made a thread but not had much response as yet x
ThrowawayLurker
23-12-20, 21:42
I wonder if twitching was removed from all the symptom lists on the internet for ALS if the health anxiety of this one would practically disappear.
I wonder if twitching was removed from all the symptom lists on the internet for ALS if the health anxiety of this one would practically disappear.
Absolutely 100% guaranteed this would be the result!
Pamplemousse
19-01-21, 13:49
https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-55718363
Motor neurone disease: Edinburgh scientists reveal breakthrough
“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“
Can someone elaborate on this part it confuses me a bit. Like, I have brisk reflexes but they are bilateral throughout and not of concern per my neuro but what does it mean that it started in upper than moved to lower. How was it not seen on EMG?
Upper motor issues are not just "brisk reflexes". It's a particular pattern of involuntary and pathological response to stimuli and can only be detected via clinical exam.
So if my neuro didn’t mention anything other than brisk reflexes then I’m good to go? I had brisk reflexes and they did an emg for twitching and arm issues and it was clean. So I guess I’m clear. I still worry tho because I’m scared that it was done too early or they needed to test more areas but I need to let it go.
Hi. This is a good thread. Problem is I'm very scared and I think I've have als. Im a 60 yr old male.. i was noticing some ankle pain for a time but never really looked at my legs . I had some back pain for awhile so I seen ortho surgeon who ran multiple test on my spine. Everthing good .but when he noticed my legs. Left leg is a lot thinner then the right leg . Calf muscle also smaller. He said it looked like muscle wasting n wants me to see neuro. I have been experiencing ankle pain when I try to walk on it. Hands n fingers been aching fir a awhile buy im extremely stressed out. I can walk in tippy toes n heels but ?? Idkn ..every time I look at my legs I start crying what is this. Scared that my left leg is going to continue to decrease in size ..scared of emg test n the c results I might get. I really feel I have this disease.
Fishman , I'm here because of atrophy in my left leg . My calf on my left is about an inch n half smaller than right side n below the calf is about almost 2 inches thinner then right leg. Im also experienced pain in fingers on both hands pain in left ankle when I walk on it.
Ortho dr says it looks like muscle waste..
I've taken so many scans on a spine .everything came back good. Blood work also. I am soo stressed right now.. idkn who to turn to.
Expresso... None of us are medical experts but what you stated about pain goes against what ALS is and does. If you read the post, ALS is about failing, not feeling. I don't doubt there's something going on but let a neuro determine that.
Positive thoughts
HI Expresso I replied on your own thread, for when you log back on again.
This is the best thread for me , I sometimes get weakness in my calves and get plenty of muscle twitches that my anxious mind automatically panics about then I read this and I am automatically calm again
Expresso... None of us are medical experts but what you stated about pain goes against what ALS is and does. If you read the post, ALS is about failing, not feeling. I don't doubt there's something going on but let a neuro determine that.
Positive thoughts
Fishman. Thank you again fur answering.
I went to my GP yesterday and he said that my left leg was not wasting but my right leg was swollen .[edema) so I felt pretty good but he said to see a vascular dr to get measured for some compression Sox. And the dr also said I had NO EDEMA IN RIGHT LEG AND HE DIDN'T KNIW WHY MY LEFT LEG WAS SKINNIER. so now I don't know who to believe n my stress level is as high as ever. Along with ankle pain n hand pain.
So dam frustrated n scared I have this..
Just want to say I am so very thankful for this post and the information contained in it. I am currently back in the rabbit hole due to swallowing issues which started on sertraline 3 years ago (which I went on due to a previous ALS spiral!!). I came off them a few months ago and the swallowing issue didn't go away so must be anxiety/tension related but of course I've spent the last month spiralling over it and I'm the worst I've been anxiety wise. Of course the stress of it all has me second guessing my speech, foot scuffs, muscle twitching all over, and feeling tension which mimics weakness in the right side of my body - all of which I had 3 years ago too.
I've been back on sertraline a week tomorrow and i think it is starting to work as I've read this post today again re: the swallowing issues and it's actually helped to reassure me massively. I did read it a few weeks ago but I was in such an awful place it was hard for me to actually process what I was reading. As it's an issue that comes and goes (and the fact I've had it at least 3 years) I'm going to assume I'm going to be alright.
davideanne
09-01-24, 02:08
I’ve been going through ALS anxiety - so much crying, so much. I’m a 42 year old male in Canada. This all started with twitching, which lead to googling, which lead to becoming an “expert” on ALS, which lead to more twitching…. I have seen numerous Dr.’s have received an EMG and seen two neurologists, everything was fine. Now I’m
Terrified of Bulbar symptoms, as the EMG was done on my limbs. I’ve now learned that many people with this anxiety eventually fear bulbar, after receiving an all clear on limbs. Regardless the fear is extreme and real, I’m seeing a psychologist, just started, and I’m
Hoping this helps. Should I bother with yet another trip to the neurologist? They’ve said everything is ok, but I hadn’t discussed the bulbar “symptoms”. Anxiety is a nightmare.
I’ve been going through ALS anxiety - so much crying, so much. I’m a 42 year old male in Canada. This all started with twitching, which lead to googling, which lead to becoming an “expert” on ALS, which lead to more twitching…. I have seen numerous Dr.’s have received an EMG and seen two neurologists, everything was fine. Now I’m
Terrified of Bulbar symptoms, as the EMG was done on my limbs. I’ve now learned that many people with this anxiety eventually fear bulbar, after receiving an all clear on limbs. Regardless the fear is extreme and real, I’m seeing a psychologist, just started, and I’m
Hoping this helps. Should I bother with yet another trip to the neurologist? They’ve said everything is ok, but I hadn’t discussed the bulbar “symptoms”. Anxiety is a nightmare.
Same boat. Anxiety is the number one route to self destruction. I've had a constant twitch in my upper arm now for weeks. It has subsided and as good as disappeared for the odd hour here and there but always returns.
I'm lying here having been awake all night stressed out because the twiching woke me up.
I'm wanting to believe that when the stress and anxiety goes the twttch will go.
The problem you've made is moving the goalposts to suit your fears. Not a criticism because I do EXACTLY THE SAME THING. 😳
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