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CMJ96
20-01-17, 14:25
Okay I'm sorry my first post on this forum has to be negative but I really need help, or some kind of reassurance from a level headed person, because my mind is wreaking havoc on me.
So currently I'm in exam season and my anxiousness has risen to very high levels, it turned into a fear of cancer and now it's moved to Motor Neurone Disease. The reason why motor neurone disease seems to be something I fear so much is because there was a PE teacher at my school who sadly developed the condition despite being a very good footballer and seeing what has happened to him has kinda stuck with me and made me very fearful of this disease.
Recently I've worried about my left arm being weaker than my right arm (I am right handed) and I've been using it more, I was playing tug of war with my dog and my arm has been aching, this has made me worry. Also I do light exercises with 4kg to help my right arm (I play darts and I have a ligament problem) and in the stress of exams I forgot about doing these exercises for about a week and a half, maybe 2 weeks and when I came back to doing them, I noticed the weight felt significantly more, which set alarm bells ringing, I feared my body had been wasting away. Generally I've been getting muscle aches in my left arm, I dont know if this is because I've came back to doing the light exercises and I've been using my left arm a bit more. Also, I've been doing the worst thing possible, I've been googling MND and I was looking at causes, and apparently head injuries can cause this, which also made me worry and think about any recent head injuries, I remember bumping my head off the wing mirror of a bus and getting a headache about 6-7 weeks ago, which made me worry about possibly causing this disease with head injuries.
Surely a bump to the head can't trigger this illness could it? I'm really scared and need reassurances of some kind

Nzxt27
20-01-17, 15:02
Your left should be weaker then your right. If you are right handed.

CMJ96
20-01-17, 15:37
This is true, I shouldn't worry, it's just the mind plays tricks on you when you see symptoms including a weak arm, and you have one arm weaker than the other

Nzxt27
20-01-17, 15:41
From what I have read ALS does not cause something to feel weak it just don't work. ALS is not feeling it failing.

Hancock
20-01-17, 16:05
From what I have read ALS does not cause something to feel weak it just don't work. ALS is not feeling it failing.

Start worrying when you can't bring a mug of coffee to your mouth when you were perfectly fine doing it the day before. That's failure. Feeling weak and being weak are two completely different things. One is subjective, the other objective. And doctors look for true objective weakness in those cases.

CMJ96
20-01-17, 16:11
I don't understand how that can be the case, surely your muscles would slowly waste to the point where you can't pick up a cup of coffee so you'd feel weak before that happens? or is it simply because your brain is telling your hand to do something and it refuses to do it?

Hancock
20-01-17, 16:23
Alright, let me break this down for you. Als, or mnd, is not a muscular disease. It is a disease of the motor neurons. What happens in this disease process is motor neurons begin to die off in a specific muscle group, and then continue on through other muscle groups. When the connection is severed, there is no signal from the brain to that muscle. The brain is saying, "bring that cup of coffee to your mouth" but the muscle can't read or hear the signal anymore, so it stays where it is. Once that connection is severed, it doesn't come back. So basic actions, such as standing on your heels or on your toes, jumping on one foot, lifting something heavy in your hand, pinching things between your fingers and picking them up and physically NOT BEING ABLE TO SO THEM is considered true objective failure. It's not about these things feeling heavier, it's about them being impossible to do no matter how many times you try.

You don't feel motor neurons die. They just do, gradually, over time. By the time you notice the weakness, the disease has already been doing its job for a good six to nine months without you or anyone else noticing. That's why patients always tell anxious peeps it's about failure, not feeling. You hear it all over the place: "one day I just couldn't open the can" and "one day I just couldn't turn my keys" and "one day, I dropped a mug of coffee for no reason and it kept happening". That's how it happens. There is no feeling weak. There is no gradual onset.

There is onset and progression and that's it. The only symptom that is debated and happens in very rare cases is muscle twitching happening before weakness, but weakness follows soon after. The longest confirmed time span being six months and that was a rare case in an already rare disease.

CMJ96
20-01-17, 16:32
Alright, let me break this down for you. Als, or mnd, is not a muscular disease. It is a disease of the motor neurons. What happens in this disease process is motor neurons begin to die off in a specific muscle group, and then continue on through other muscle groups. When the connection is severed, there is no signal from the brain to that muscle. The brain is saying, "bring that cup of coffee to your mouth" but the muscle can't read or hear the signal anymore, so it stays where it is. Once that connection is severed, it doesn't come back. So basic actions, such as standing on your heels or on your toes, jumping on one foot, lifting something heavy in your hand, pinching things between your fingers and picking them up and physically NOT BEING ABLE TO SO THEM is considered true objective failure. It's not about these things feeling heavier, it's about them being impossible to do no matter how many times you try.

You don't feel motor neurons die. They just do, gradually, over time. By the time you notice the weakness, the disease has already been doing its job for a good six to nine months without you or anyone else noticing. That's why patients always tell anxious peeps it's about failure, not feeling. You hear it all over the place: "one day I just couldn't open the can" and "one day I just couldn't turn my keys" and "one day, I dropped a mug of coffee for no reason and it kept happening". That's how it happens. There is no feeling weak. There is no gradual onset.

There is onset and progression and that's it. The only symptom that is debated and happens in very rare cases is muscle twitching happening before weakness, but weakness follows soon after. The longest confirmed time span being six months and that was a rare case in an already rare disease.

Thank you for explaining this to me, I always wondered whether it was muscles being weak causing people to be unable to do normal actions or whether it was something blocking it instead. I suppose muscles wasting occurs after you notice the inability to do simple things?

Hancock
20-01-17, 16:47
Muscle wasting occurs when the connection has been fully severed. Since the muscle isn't getting a signal to move, it deadens and starts to atrophy due to lack of use or movement. So clinical weakness is noted prior to atrophy, but sometimes can occur along side it. You cannot have atrophy prior to clinical weakness, though.

That bit of info was my saving grace when I picked up some medical texts and journals versus reading crap off google. I thought it was a disease of the muscles for a while during my first initial bout with this fear (sort of like muscular dystrophy) but it's a completely different beast with a completely different pathology.

And it acts the same in all cases of limb and bulbar. Bulbar always begins with slurred speech or the inability to do normal things you could do the day prior (whistle, for example). Limb onset occurs in one limb (two in rare cases) and starts either in the feet or the hands, but cannot start at both areas simultaneously. It also cannot start in any midsection of the body (so for example, your thigh first becomes clinical weak, and then the rest of your leg and foot). It starts always at either the hands or the feet. That's why a notable first symptom for the foot is the classic foot drop, and a notable first symptom of the hand is the inability to do basic movement (like tap your fingers to each other, or create a "screw in the light bulb" motion).

Google is a piece of crap when it comes to this particular disease. There's too much misinformation for people to interpret themselves and thus we have hundreds and thousands of people on health anxiety forums thinking they have als when they don't.

Colicab85
20-01-17, 16:52
Muscle wasting occurs after your have the inability to do things.

Muscle wasting only occurs because those muscles can no longer be used either fully or being used correctly.

Like Hancock says, ALS does not cause muscles to die. It kills the nerves that control the muscles and from then you get muscle wasting followed by twitching as the muscles are dying.

axolotl
20-01-17, 16:53
Not much to add except to say Hancock's explanation is a great one - the brief, bullet-pointed medical sites we get so fixated on don't usually give the nuanced explanation of why symptoms happen, or in what order. Also you need to bear in mind that MND is such a rare disease that it shouldn't really be on anyone's radar unless dramatic symptoms start to present - it's not an explanation for vague feelings.

Hopefully this thread has been enough to convince you what you're describing isn't what you're fearful of.

CMJ96
20-01-17, 16:54
Muscle wasting occurs when the connection has been fully severed. Since the muscle isn't getting a signal to move, it deadens and starts to atrophy due to lack of use or movement. So clinical weakness is noted prior to atrophy, but sometimes can occur along side it. You cannot have atrophy prior to clinical weakness, though.

That bit of info was my saving grace when I picked up some medical texts and journals versus reading crap off google. I thought it was a disease of the muscles for a while during my first initial bout with this fear (sort of like muscular dystrophy) but it's a completely different beast with a completely different pathology.

And it acts the same in all cases of limb and bulbar. Bulbar always begins with slurred speech or the inability to do normal things you could do the day prior (whistle, for example). Limb onset occurs in one limb (two in rare cases) and starts either in the feet or the hands, but cannot start at both areas simultaneously. It also cannot start in any midsection of the body (so for example, your thigh first becomes clinical weak, and then the rest of your leg and foot). It starts always at either the hands or the feet. That's why a notable first symptom for the foot is the classic foot drop, and a notable first symptom of the hand is the inability to do basic movement (like tap your fingers to each other, or create a "screw in the light bulb" motion).

Google is a piece of crap when it comes to this particular disease. There's too much misinformation for people to interpret themselves and thus we have hundreds and thousands of people on health anxiety forums thinking they have als when they don't.

Thank you, this really clears it up. I agree with you about google, it needs more clearer and explained lists of symptoms. I thought the website for the NHS would be useful but I found myself wanting to ask more questions and hence found myself more worried because I was thinking about the worst case scenario

Nzxt27
20-01-17, 17:15
Muscle wasting occurs when the connection has been fully severed. Since the muscle isn't getting a signal to move, it deadens and starts to atrophy due to lack of use or movement. So clinical weakness is noted prior to atrophy, but sometimes can occur along side it. You cannot have atrophy prior to clinical weakness, though.

That bit of info was my saving grace when I picked up some medical texts and journals versus reading crap off google. I thought it was a disease of the muscles for a while during my first initial bout with this fear (sort of like muscular dystrophy) but it's a completely different beast with a completely different pathology.

And it acts the same in all cases of limb and bulbar. Bulbar always begins with slurred speech or the inability to do normal things you could do the day prior (whistle, for example). Limb onset occurs in one limb (two in rare cases) and starts either in the feet or the hands, but cannot start at both areas simultaneously. It also cannot start in any midsection of the body (so for example, your thigh first becomes clinical weak, and then the rest of your leg and foot). It starts always at either the hands or the feet. That's why a notable first symptom for the foot is the classic foot drop, and a notable first symptom of the hand is the inability to do basic movement (like tap your fingers to each other, or create a "screw in the light bulb" motion).

Google is a piece of crap when it comes to this particular disease. There's too much misinformation for people to interpret themselves and thus we have hundreds and thousands of people on health anxiety forums thinking they have als when they don't.



Thanks Hancock this is helping me as well. I just had it in back of my mind lately. Had some weird syptoms going on past few days but if it's like there at of my symptoms seems to be all anxeity related. so if it starts in feet or hands then it would make your toes and fingers not respond like they should? And if you can still raise your foot from foot drop then it's not ALS in your feet. My twitching has been around for 10 months now but I don't notice any real weakness or anything. Just fatigue and soreness some.

Hancock
20-01-17, 17:39
Thanks Hancock this is helping me as well. I just had it in back of my mind lately. Had some weird syptoms going on past few days but if it's like there at of my symptoms seems to be all anxeity related. so if it starts in feet or hands then it would make your toes and fingers not respond like they should? And if you can still raise your foot from foot drop then it's not ALS in your feet. My twitching has been around for 10 months now but I don't notice any real weakness or anything. Just fatigue and soreness some.

Which means it's not als. If you can still use your hands and feet to do the things they can normally do, you do not have als or any other mnd. That's the most black and white explanation I can do.

Elen
20-01-17, 17:47
I have copied this from another thread but it is good reading

It was written by an experienced neurologist about MS but is also relevant to many other fears.

It's important for you to acknowledge that clinical diagnosis, particularly where neurodegenerative diseases are concerned, is quite complex and under no circumstances can accuracy of such a task be accomplished by attempting to draw subjective comparisons between the symptoms you feel and some list of clinical findings consistent with Multiple Sclerosis. I can tell you that with a great deal of confidence and certainty because I'm a retired neurologist and was in practice for more than 40 years.

The case with absolutely all neurological disease is the specific company that certain symptoms keep, or in other words the specific presentation of very specific symptoms known in clinical medicine to be distinguished from other conditions. You make no mention of a single one of these specific caveats which would suggest the possibility of MS.

Self-diagnosis can be the devil's own quill in persons with health anxiety, for the more apprehensive they become that their summations are accurate the more anxiety is produced, followed by an increase in somatoform or physical symptoms which only serves to reinforce their notions. It is a cycle that can be very difficult to break and it's critical for you to realize that the reason for such resistance has to do with the development of a specific type of fear that suggests a threat to survival.

This type of perception causes the brain to respond in a very particular manner that is genetically pre-wired in the brain to identify and overcome the threat such that feelings of safety are re-established. Again, this is an innate survival response induced by the brain and it's the very process which causes persons to feel compelled to confirm their suspicions and because it feels natural, the individual is often convinced by the "gut" feeling that their suspicions are accurate. In actuality, the exact opposite is most often the case and efforts to self-diagnose are far from the requisite accuracy.

Indeed, anxiety can induce physical sequelae very similar to some neurological diseases and the reason for this is quite simply that both anxiety and true neuropathology invoke changes upon the one and only existing nervous system. Thus, the layperson looks directly past this obvious fact and instead is driven to make associations which by their interpretations, seem completely rational and substantiated.

Nzxt27
20-01-17, 19:28
Which means it's not als. If you can still use your hands and feet to do the things they can normally do, you do not have als or any other mnd. That's the most black and white explanation I can do.

Thanks I was thinking so. Just sucks twitching 24/7 I guess my anxeity over the past year really messed up my nervous system. I know the odds are very slim I have even did the math and it's not even 1% of a percent if you know what I mean. Thanks for your help.

Hancock
20-01-17, 19:31
Thanks I was thinking so. Just sucks twitching 24/7 I guess my anxeity over the past year really messed up my nervous system. I know the odds are very slim I have even did the math and it's not even 1% of a percent if you know what I mean. Thanks for your help.

Exactly, which is why it shouldn't be on your radar or mine (or anyone else's on these boards for that matter because I've never seen a post complaining about true clinical weakness).

Twitching is just twitching. Anxiety is a b*tch. It's best to just leave it at that.

Nzxt27
20-01-17, 20:00
Exactly, which is why it shouldn't be on your radar or mine (or anyone else's on these boards for that matter because I've never seen a post complaining about true clinical weakness).

Twitching is just twitching. Anxiety is a b*tch. It's best to just leave it at that.

Yah it is a true b*tch. I really wouldn't wish it on my worst enemy. It sucks when people around you don't really understand but you can't blame them. I wouldn't have understood it either if someone was talking to me about it over a year ago.

CMJ96
20-01-17, 20:59
The thing about head injuries I mentioned though, would something such as a blow to the head be able to cause the illness? I've seen repetitive head injuries mentioned but it doesn't really specify how many, or how severe

Mummybee
20-01-17, 21:15
I agree with everything Hancock said.

I don't suppose you're a BFS sufferer are you Hancock?

Mummybee

Hancock
20-01-17, 22:22
The thing about head injuries I mentioned though, would something such as a blow to the head be able to cause the illness? I've seen repetitive head injuries mentioned but it doesn't really specify how many, or how severe



Think repetitive head injuries sustained by people like football players or military personnel in training or combat situations.

---------- Post added at 21:22 ---------- Previous post was at 21:18 ----------


I agree with everything Hancock said.

I don't suppose you're a BFS sufferer are you Hancock?

Mummybee

I am. Never been formally diagnosed as I've never had an emg (neuro that I saw refused to do it and said all my symptoms were anxiety related (clean exam) and that was a year and some change ago. Since then, obviously no weakness has occurred but I've had the whole bout of bfs: perceived weakness, twitching in every muscle you can imagine, perceived weakness, cramping (no true cramps though), fatigue, migrating pain, off balance feelings, tingling, numbness, other odd sensations, etc.

Mummybee
20-01-17, 22:48
I have BFS also. Never officially diagnosed because it doesn't really exist here in Australia, they just call it "anxiety related".
Your extensive knowledge of ALS/MND was typical and telling of a bfser
😏

Hancock
20-01-17, 23:05
I have BFS also. Never officially diagnosed because it doesn't really exist here in Australia, they just call it "anxiety related".
Your extensive knowledge of ALS/MND was typical and telling of a bfser
��

I've done my research. Too much research honestly haha. When I have an issue I need to dissect and understand what I'm up against, and I was already obsessing about the fact that I could be dying, so I guess the next step would just be to know how it was going to happen (medically speaking). And that's where I learned a lot of the stuff I use to reassure others (and myself).

Bfs is better than the alternative diagnosis, as is anxiety, but the als fear has got to be THE WORST of my health anxiety bouts.

CMJ96
20-01-17, 23:11
Also, you say standing on your heels is something someone with motor neurone disease can't do. Do you mean balance like that? because when I try to do that, i can raise the front of my feet off the floor but I lose balance

Hancock
20-01-17, 23:23
Also, you say standing on your heels is something someone with motor neurone disease can't do. Do you mean balance like that? because when I try to do that, i can raise the front of my feet off the floor but I lose balance



No. I can barely balance on my heels and I do yoga, haha. If you can walk around on your heels, and keep the balls of your feet off the floor, you're fine.

CMJ96
20-01-17, 23:25
No. I can barely balance on my heels and I do yoga, haha. If you can walk around on your heels, and keep the balls of your feet off the floor, you're fine.

That's reassuring, because I was stumbling around every time i kept trying to do it, but I can definitely walk around like that

Nzxt27
20-01-17, 23:29
Your fine you don't have ALS. I have did quite a bit if reasearch on it also. Also on colon cancer and heart issues if anyone wants to know. Few other odd and end things. It's sad but done times I feel like I should have been a doctor all the stuff I read sticks with me like a hobby of mine. I guess it sticks with you when you really think your dying if it.

Fishmanpa
20-01-17, 23:32
I'm going to discourage self testing like walking on your heels or balancing this way or that etc. I once was in the store and saw someone doing this in an aisle. If it weren't for the fact I read about HA sufferers doing this sort of thing here, I would have just thought that person was just a looney.

Self testing is just feeding the dragon. If medical testing has eliminated the possibility then it's time to treat the root cause which is anxiety. Treating the real issue subsequently treats the real physical symptoms associated with it.

These types type of illnesses are about failing not feeling. There have been numerous threads about this recently (Nodes too! What is it... Node and ALS Month on NMP?) and frankly, of the tens of thousands of threads here and on AZ about this, not one has EVER been diagnosed and neither will this situation.

Positive thoughts

CMJ96
20-01-17, 23:37
Your fine you don't have ALS. I have did quite a bit if reasearch on it also. Also on colon cancer and heart issues if anyone wants to know. Few other odd and end things. It's sad but done times I feel like I should have been a doctor all the stuff I read sticks with me like a hobby of mine. I guess it sticks with you when you really think your dying if it.
Understandable, I also have ulcerative colitis and take a medication which slightly increases the risk of Lymphoma, you can imagine the googling I've done :weep:

---------- Post added at 22:37 ---------- Previous post was at 22:32 ----------


I'm going to discourage self testing like walking on your heels or balancing this way or that etc. I once was in the store and saw someone doing this in an aisle. If it weren't for the fact I read about HA sufferers doing this sort of thing here, I would have just thought that person was just a looney.

Self testing is just feeding the dragon. If medical testing has eliminated the possibility then it's time to treat the root cause which is anxiety. Treating the real issue subsequently treats the real physical symptoms associated with it.

These types type of illnesses are about failing not feeling. There have been numerous threads about this recently (Nodes too! What is it... Node and ALS Month on NMP?) and frankly, of the tens of thousands of threads here and on AZ about this, not one has EVER been diagnosed and neither will this situation.

Positive thoughts

Thank you for the helpful words, I think you're definitely right, self testing will only make matters worse, I need to realize I haven't had an actual tell-tale symptom of the illness so I need to stop worrying

Fishmanpa
20-01-17, 23:40
Thank you for the helpful words, I think you're definitely right, self testing will only make matters worse, I need to realize I haven't had an actual tell-tale symptom of the illness so I need to stop worrying

Exactly! :yesyes:

Positive thoughts

Nzxt27
20-01-17, 23:42
Understandable, I also have ulcerative colitis and take a medication which slightly increases the risk of Lymphoma, you can imagine the googling I've done :weep:

---------- Post added at 22:37 ---------- Previous post was at 22:32 ----------



Thank you for the helpful words, I think you're definitely right, self testing will only make matters worse, I need to realize I haven't had an actual tell-tale symptom of the illness so I need to stop worrying

I have also Google about ulcer colitis and Crohn's and all that good stuff. I was having crazy stomach symptoms and looked up everything. When really I should went to GI Doctor to begin with and let him do his job and not worried as much because in the end it was just minor hemmoroids I had blocking me up and causing me gas/constipation/and thin stools with blood.

Capercrohnj
21-01-17, 00:00
Understandable, I also have ulcerative colitis and take a medication which slightly increases the risk of Lymphoma, you can imagine the googling I've done :weep:

---------- Post added at 22:37 ---------- Previous post was at 22:32 ----------


Thank you for the helpful words, I think you're definitely right, self testing will only make matters worse, I need to realize I haven't had an actual tell-tale symptom of the illness so I need to stop worrying
Remicade? Azathioprine (imuran)? I'm on those for crohn's

CMJ96
21-01-17, 00:04
Remicade? Azathioprine (imuran)? I'm on those for crohn's

Azathioprine, it's generally kept me healthy though so I accept the positives outweigh the negatives

Capercrohnj
21-01-17, 00:32
I feel the same way. If it weren't for Remicade I probably wouldn't live long enough to get cancer anyways.

Hancock
21-01-17, 00:38
I'm going to discourage self testing like walking on your heels or balancing this way or that etc. I once was in the store and saw someone doing this in an aisle. If it weren't for the fact I read about HA sufferers doing this sort of thing here, I would have just thought that person was just a looney.

Self testing is just feeding the dragon. If medical testing has eliminated the possibility then it's time to treat the root cause which is anxiety. Treating the real issue subsequently treats the real physical symptoms associated with it.

These types type of illnesses are about failing not feeling. There have been numerous threads about this recently (Nodes too! What is it... Node and ALS Month on NMP?) and frankly, of the tens of thousands of threads here and on AZ about this, not one has EVER been diagnosed and neither will this situation.

Positive thoughts

These types type of illnesses are about failing not feeling. There have been numerous threads about this recently (Nodes too! What is it... Node and ALS Month on NMP?) and frankly, of the tens of thousands of threads here and on AZ about this, not one has EVER been diagnosed and neither will this situation.

SO IMPORTANT.

Thanks fish.

CMJ96
22-01-17, 18:38
I'm sorry to be back and worried, but I've been thinking about twitching being a debated first symptom. I keep thinking my left arm is twitching but I don't know if it's just psychosomatic. What is the twitching like with ALS, would it be obvious and persistent and unsettling?

Josh1234
22-01-17, 19:13
there is no hard and fast rule about ALS twitching, despite what many BFS'ers will tell you. The main thing is weakness. That's it. If you're banking on being one of the 1% or less who reported twitching as an initial symptom in an already very rare disease, well, that's just no way to live. May as well not leave the house for fear of being run over by a bus.

Nzxt27
23-01-17, 00:06
ALS is really rare less the 1% of a percent. I have did the math. It's like .00006, that is taking away quite a few millions from kids and not counting people under age 50-60 have a lower chance.

CMJ96
25-01-17, 16:22
I'm really sorry for being back once again but I read about abnormal reflexes being a problem with motor neurone disease, so I tested my knee-jerk reflex and it kicked up quite a bit and swayed limp for a couple of seconds, this freaked me out and scared me, is this normal? what do they mean by over active reflexes in motor neurone disease?
Once again I'm sorry it's just twitching in my shoulder/arm coupled with this have somewhat scared me, I know its very rare that twitching occurs first but the reflexes thing spooked me

Hancock
25-01-17, 17:01
https://youtu.be/PPPgTq3L6k4

Hoping this is allowed and that it will shed some light on on what abnormal truly looks like.

---------- Post added at 16:01 ---------- Previous post was at 15:59 ----------

See how his knee literally bounces and doesn't stop after it's hit? That's abnormal. Brisk reflexes are not abnormal nor do they indicate something sinister.

---------- Post added at 16:01 ---------- Previous post was at 16:01 ----------

Also you're not qualified to check your own reflexes. Stop.

CMJ96
25-01-17, 17:07
Sorry, it's just I've seen stories where people have had cramping/twitching/aches before symptoms and it has made me worried, and caused me to start checking other things, I wish I hadn't started thinking about this horrible scary disease because it takes over the mind and causes so much worry :(

Fishmanpa
25-01-17, 17:10
Maybe you can call your doctor and get something to help you calm down. Your posts indicate you're really in a spiral and I'm afraid words on a screen will not quell your fears.

Good luck and as always...

Positive thoughts

CMJ96
25-01-17, 17:13
Maybe you can call your doctor and get something to help you calm down. Your posts indicate you're really in a spiral and I'm afraid words on a screen will not quell your fears.

Good luck and as always...

Positive thoughts

I'm tempted to go see the doctor and ask for some medication to help me relax, my worry is that he will find something wrong with me or notice something indicative of MND

It truly terrified me when I seen a story about the PE teacher who used work at my school in the newspaper because he was only in his mid 20s when he was diagnosed. To see someone who was really healthy and really fit confined to a wheelchair on a ventilator, it spooked me

Hancock
25-01-17, 17:14
YOU ARE FINE. If those were the symptoms of als, then this may as well be an als forum because TONS of us have those symptoms and people who eventually have als aren't exempt from the day to day aches and pains we all deal with because we're human.

You need to get it through your head that you aren't sick. If you had als, even at the earliest stage, something would have been noted on a clinical exam (yes, that means even prior to weakness).

Chill out. What if you end up getting als or some other disease at some point? What are you gonna do about it? The answer is nothing. But you better be sure to not have to look back on all your healthy years and think: "man, why did I waste so much precious time worrying?"

Put your life into perspective. Go to therapy. Get on some meds. Take a vacation. And stop thinking that you're ill when you're not. When and if you ever start falling down the stairs or dropping a cup everyday, then I'll tell you to worry. But now? You have no reason to, just like everyone on this board.

CMJ96
25-01-17, 17:21
YOU ARE FINE. If those were the symptoms of als, then this may as well be an als forum because TONS of us have those symptoms and people who eventually have als aren't exempt from the day to day aches and pains we all deal with because we're human.

You need to get it through your head that you aren't sick. If you had als, even at the earliest stage, something would have been noted on a clinical exam (yes, that means even prior to weakness).

Chill out. What if you end up getting als or some other disease at some point? What are you gonna do about it? The answer is nothing. But you better be sure to not have to look back on all your healthy years and think: "man, why did I waste so much precious time worrying?"

Put your life into perspective. Go to therapy. Get on some meds. Take a vacation. And stop thinking that you're ill when you're not. When and if you ever start falling down the stairs or dropping a cup everyday, then I'll tell you to worry. But now? You have no reason to, just like everyone on this board.
This is somewhat reassuring, last night I lifted my 4kg bar 150 times, 40 biceps, 40 reverse biceps and 70 triceps, if I had ALS I surely would not have been able to do that? I think therapy would be very useful and I am waiting for an appointment with a therapist. Unfortunately this has all stemmed from generally being anxious about university exams, then when I seen the report in the newspaper about the PE teacher, it triggered something in my mind, I think it was the shock.
Also I haven't had a clinical exam, I'm just at the fear stage

Hancock
25-01-17, 17:35
Somewhat reassuring? I don't know what is gonnaa reassure you after 50+ replies of people telling you that you're fine and that they've gone through exactly what you're going through right now.

I get being in the fear stage but you need to DO SOMETHING ABOUT IT. Sitting around thinking and reading articles online about something you do jot have is not going to help your anxiety, you're just feeding it.

Fishmanpa
25-01-17, 17:42
last night I lifted my 4kg bar 150 times, 40 biceps, 40 reverse biceps and 70 triceps, if I had ALS I surely would not have been able to do that?

Ok CMJ... I want you to answer that question... It's a "Yes" or "No" answer.

I know, you know and everyone here that have been reassuring you know the answer.

Looking forward to your response.

Positive thoughts

CMJ96
25-01-17, 17:44
Somewhat reassuring? I don't know what is gonnaa reassure you after 50+ replies of people telling you that you're fine and that they've gone through exactly what you're going through right now.

I get being in the fear stage but you need to DO SOMETHING ABOUT IT. Sitting around thinking and reading articles online about something you do jot have is not going to help your anxiety, you're just feeding it.

I'm sorry, I made it sound like what you were saying isn't helping, it is, it's useful to know these things and I appreciate the help you're trying to give, I am waiting to see a therapist and hopefully they will sort me out. This is an incredibly rare illness especially in people of my age and it should not be in my mind when I have a symptom. Unfortunately due to witnessing someone get this illness it has spread fear in my mind and taken over, I need to stop that and think more positive, I certainly would not be able to lift something 150 times if I had that illness, there would be something obviously wrong if I did have the illness, and my own checks on my own body mean nothing, because I'm not a doctor, every human body has it's own little differences and quirks, that is nature. I noticed before that I could visibly see my pulse in my neck, so this worry and fear is not doing me any good, I need to try and adopt a more positive mind-set.

axolotl
25-01-17, 17:45
This is somewhat reassuring, last night I lifted my 4kg bar 150 times, 40 biceps, 40 reverse biceps and 70 triceps, if I had ALS I surely would not have been able to do that?

I haven't got ALS and I certainly wouldn't be able to do that!

This is 100% fear.

You have no symptoms of the disease.

You're not in the right age group to get the disease.

You don't have the ability to read medical website to diagnose yourself.

It's a incredibly rare disease anyway.

You haven't any possible conceivable reason to think you have it.

You've got yourself into a state based on absolutely nothing, and I hope all goes well with the therapist because your mental health here is what needs focussing on.

CMJ96
25-01-17, 17:46
Ok CMJ... I want you to answer that question... It's a "Yes" or "No" answer.

I know, you know and everyone here that have been reassuring you know the answer.

Looking forward to your response.

Positive thoughts

Indeed, I have to say the answer must be a yes. In fact I actually did it to prove to myself that I am okay, anxiety is horrible because I keep going to sleep satisfied that I'm okay, then waking up the day after feeling scared/down

I need to impose a rule upon myself where I am not allowed to google. Googling just feeds the fear and you end up making yourself sick with worry

Fishmanpa
25-01-17, 17:52
Indeed, I have to say the answer must be a yes. In fact I actually did it to prove to myself that I am okay, anxiety is horrible because I keep going to sleep satisfied that I'm okay, then waking up the day after feeling scared/down

I need to impose a rule upon myself where I am not allowed to google. Googling just feeds the fear and you end up making yourself sick with worry

Thank you for your honesty. Acknowledging this is actually a HUGE step forward. Saying that means you know deep down you're Ok and that this is an illness of your mind, not your body. Pursuing the mental aspects of this in therapy is the best road moving forward. Looking forward to hearing about your first appointment.

One more thing.... You may want to consider lessening your participation on the forum. By posting your fears, you give them additional life and sitting here waiting and reading other posts may be increasing and prolonging your anxiety issues. Most that enter into therapy are advised the same thing.

Positive thoughts

CMJ96
25-01-17, 17:59
Thank you for your honesty. Acknowledging this is actually a HUGE step forward. Saying that means you know deep down you're Ok and that this is an illness of your mind, not your body. Pursuing the mental aspects of this in therapy is the best road moving forward. Looking forward to hearing about your first appointment.

One more thing.... You may want to consider lessening your participation on the forum. By posting your fears, you give them additional life and sitting here waiting and reading other posts may be increasing and prolonging your anxiety issues. Most that enter into therapy are advised the same thing.

Positive thoughts

Thank you for the advice, I need to accept I'm fine, for a few days I've been doing basic strength tests like standing on my heels and toes, trying to resist my fingers being pushed together, I've been using my left arm for basic things more often. And inevitably this behavior will cause aches or pains because I'm doing stuff my body is not used to, this will hence feed anxiety. I must at least concentrate on something else, so I'm not dwelling on this.

axolotl
25-01-17, 18:03
Thank you for the advice, I need to accept I'm fine, for a few days I've been doing basic strength tests like standing on my heels and toes, trying to resist my fingers being pushed together, I've been using my left arm for basic things more often. And inevitably this behavior will cause aches or pains because I'm doing stuff my body is not used to, this will hence feed anxiety. I must at least concentrate on something else, so I'm not dwelling on this.

The secret is accepting you're fine because logically you haven't a single thing that should lead you to even entertain the thought you have ALS, rather than accepting you're fine because you're self-diagnosing doing tests you read about on the Internet.

CMJ96
25-01-17, 18:10
The secret is accepting you're fine because logically you haven't a single thing that should lead you to even entertain the thought you have ALS, rather than accepting you're fine because you're self-diagnosing doing tests you read about on the Internet.
Yes, any signs would be obvious, I'd be unable to function as I normally do, no matter how hard I try, I'd lack control over myself. Instead of waking up and noticing a symptom, I've read something which has shocked me, and caused me to check myself just incase, which is not the right way
You don't worry about a brain tumor every time you get a headache

Hancock
25-01-17, 18:24
You don't worry about a brain tumor every time you get a headache

Exactly

axolotl
25-01-17, 18:28
Yes, any signs would be obvious, I'd be unable to function as I normally do, no matter how hard I try, I'd lack control over myself. Instead of waking up and noticing a symptom, I've read something which has shocked me, and caused me to check myself just incase, which is not the right way
You don't worry about a brain tumor every time you get a headache

Exactly, though I think you're still giving it a too much credence (and believe me, I'm talking as someone who's done the same thing). The reason you don't have ALS is simply, at no point, have you really had any real reason at all to think you do.

CMJ96
25-01-17, 18:37
Exactly, though I think you're still giving it a too much credence (and believe me, I'm talking as someone who's done the same thing). The reason you don't have ALS is simply, at no point, have you really had any real reason at all to think you do.
Yes, had I not seen that report about the man who got ALS it wouldn't have crossed my mind and I wouldn't be in this situation, because I've not had an actual symptom which should cause worry

axolotl
25-01-17, 18:38
Yes, had I not seen that report about the man who got ALS it wouldn't have crossed my mind and I wouldn't be in this situation, because I've not had an actual symptom which should cause worry

Exactly :)

Nzxt27
25-01-17, 18:39
I'm scared of same thing. My legs have been getting real sore lately and I'm not doing anything to make them sore. Sometimes I wake up and they feel so sore. My twitches are bad right now too.

Losing our family dog didn't help with my stress/anxiety much over past weekend.

axolotl
25-01-17, 18:43
I'm scared of same thing. My legs have been getting real sore lately and I'm not doing anything to make them sore. Sometimes I wake up and they feel so sore. My twitches are bad right now too.

Losing our family dog didn't help with my stress/anxiety much over past weekend.

Sore legs and twitches aren't symptoms of ALS. Bluntly, you're attaching an arbitrary scary illness to a general bad feeling that's more than likely anxiety. It's worth reading this thread from the start.

CMJ96
25-01-17, 18:45
I'm scared of same thing. My legs have been getting real sore lately and I'm not doing anything to make them sore. Sometimes I wake up and they feel so sore. My twitches are bad right now too.

Losing our family dog didn't help with my stress/anxiety much over past weekend.

I feel for you man, I lost my dog when I was 15, cried my eyes out for ages. You love them so much then they break your heart

Nzxt27
25-01-17, 18:54
Sore legs and twitches aren't symptoms of ALS. Bluntly, you're attaching an arbitrary scary illness to a general bad feeling that's more than likely anxiety. It's worth reading this thread from the start.

I know sore legs and twitches are not tied to ALS. MS and PD scare me now. Of course ALS fear is always in back of my mind but I try to push it out.

I finally got some decent sleep last night. I even kept in my jeans so I couldn't really feel my legs twitching together. Woke up though legs still aching.

---------- Post added at 17:54 ---------- Previous post was at 17:52 ----------


I feel for you man, I lost my dog when I was 15, cried my eyes out for ages. You love them so much then they break your heart

Yeah I loved her so much. Taking care of her the last 3 days of her life was very hard for me but she was there for me through my really rough anxiety times and I wanted to be there for her through her rough times. I miss her so much. I don't even like coming home anymore. It's not the same. I know she didn't mean to break my heart but my heart is really broken. She was like a kid to me.

CMJ96
26-01-17, 21:42
Well, I've had the last of my exams today, and I generally feel a bit more relaxed, perhaps even less tense, I'm still getting twitches, in my legs, arms, everything, I guess im just a twitcher! also the bits of cramp I've been getting in my left arm... it's similar to the kind of sensations ive got in my right arm before when I've overworked it, so I guess it's not too much of a concern. Generally I feel a lot less tense, thanks for the help guys, hopefully I can continue on in a positive way after these initial signs of improvement

Josh1234
27-01-17, 04:35
Classic BFS. Once it comes, it doesn't really leave. I've twitched every single day since Feb 23rd last year.

axolotl
27-01-17, 12:18
I'm still getting twitches, in my legs, arms, everything, I guess im just a twitcher!

Best attitude to have. Not everything "wrong" with us is due to something horrible or concerning, we're fallible machines and we're all a bit different and a bit weird in our own ways! And in fact once you talk to people and people start being honest we all have very similar little quirks, we just don't talk about them very often.

My calf muscles twitch nearly all the time, especially when stressed, it's just one of those things.

CMJ96
27-01-17, 12:46
Best attitude to have. Not everything "wrong" with us is due to something horrible or concerning, we're fallible machines and we're all a bit different and a bit weird in our own ways! And in fact once you talk to people and people start being honest we all have very similar little quirks, we just don't talk about them very often.

My calf muscles twitch nearly all the time, especially when stressed, it's just one of those things.

I'm not gonna lie, I woke up this morning with pins and needles in my hands and one foot, and I freaked out a little, got quite twitchy, but once I googled it and read that its not associated with MND, I have since calmed a bit, and sat here the twitching isn't quite so severe once more. Also I noticed that I can see my own pulse in my wrist if i put my hand in a certain position (i thought it was twitching but i felt a pulse there). If nothing else I've learned more about my body and the human body as a whole

Josh1234
27-01-17, 15:46
Again, you are describing textbook benign fasciculation syndrome

Nzxt27
27-01-17, 17:40
I hope mine is BFS. Mine is bad. Everyday all over. Now pretty sure I got restless leg syndrome too. My legs feel for funny but if I walk they feel better.

unsure_about_this
27-01-17, 23:32
One of my neighbours had this condition he died 2 years ago, he been suffering for 18 months, he was in his late 80s early 90s, where he lost his voice slowly, lost weight could not eat etc

WorryRaptor
20-12-17, 14:18
I'm terrified of having ALS or MS due to perceived weakness and heaviness in entire left side and face. Logic tells me that these conditions wouldn't effect the entire left side in one go. While I'm feeling weak, I'm not actually weak, so I'm trying to cling onto the fact that functional neurological disorder is a real thing and that my brain is just being a ball of anxiety.
I wonder does persistent anxiety change the brains chemistry enough for it to become a subconscious habit? Almost like anti-anxiety meds would temporarily do, just the opposite effect? So, even when relaxed, we experience unsettling symptoms. For those of us who worry about neuro disorders, this 'subconscious awareness' is probably manifesting the symptoms even more. Like our survival mode is turned up to max levels.

CMJ96
12-01-18, 22:41
Okay guys, it's been just about a year and I want to say, thank you to all of you for all the help you guys gave me, the advice you gave me was spot on and now I can definitely look back and say, I WAS BEING SILLY!

Since this thread I went to see a therapist, discovered I was suffering from vitamin D deficiency which was causing me to feel down, depressed, and have negative feelings, it can also cause strange behaviour with muscles so that may explain the twitching! I have improved greatly and whilst I have the odd moment where I'm a little worried, I get past it and continue my life as normal. And most of all, still managed to pass my exams at university :)

I just want to say, anyone who visits this forum looking for help or any advice or whatever from someone who has suffered from stress relating to a perceived onset of ALS, that it does take time, it takes time for you to get past it, but trust me, you do not have this awful disease, and you will be fine. With time I began to realise that I definitely do not have a neurodegenerative disease because after a while you would see real symptoms. Seek help from a psychologist or a therapist, fight it and eventually the stress, the worry and panic will ease.

I found that it wasn't about convincing yourself you don't have the disease, it was about accepting that there is a infinitesimally small chance of developing it, but we must be comfortable with this, because we cannot control that and we must accept that there is a certain degree of uncertainty to life that we cannot decide ourselves.

Lots of positive vibes and hugs, thank you so much

---------- Post added at 21:41 ---------- Previous post was at 21:35 ----------


I'm terrified of having ALS or MS due to perceived weakness and heaviness in entire left side and face. Logic tells me that these conditions wouldn't effect the entire left side in one go. While I'm feeling weak, I'm not actually weak, so I'm trying to cling onto the fact that functional neurological disorder is a real thing and that my brain is just being a ball of anxiety.
I wonder does persistent anxiety change the brains chemistry enough for it to become a subconscious habit? Almost like anti-anxiety meds would temporarily do, just the opposite effect? So, even when relaxed, we experience unsettling symptoms. For those of us who worry about neuro disorders, this 'subconscious awareness' is probably manifesting the symptoms even more. Like our survival mode is turned up to max levels.

You are right to be afraid of ALS, it's a scary illness, but what you must consider is that the chances of developing it are very slim, and realise that the symptoms you are having are just that, symptoms. To tell whether someone has ALS a number of clinical SIGNS must be present, which another person can measure, and visibly see, you do not have these signs. If nothing else, you must remember that ALS is degenerative, so it will only get worse, there will be no times where it's better, or goes away, 3 months down the line, if you are still the same, or are better, you definitely don't have it. The human brain is a strange thing, it can fixate on things which are very arbitrary and aren't worth stressing over.

I wish you the very best in trying to get over the health anxiety