I am beyond terrified. I think it’s real this time.

[BlueIris]

Enough with the self-pity already! It's melodramatic and embarrassing. You've got so many people here who want to help you, but all you're doing is posting the same ridiculous nonsense and continuing with the same self-destructive behaviours.

FMP says you were removed from a forum for harrassing people with a terminal disease. Take a moment to think about that and how it makes you feel.

You've let your HA take over your entire life, so of course there's nothing else on your mind. Please, PLEASE think about what people here are telling you - that the problem isn't a twitchy foot, it's the anxiety. Oh, and the thing about anxiety is that it's eminently manageable if you're willing to face up to yourself and put the effort in.

If you can't listen to me because I'm being too harsh, listen to Nora. We've both been there and we've both seen the light at the other side. So have so many others on this thread, and we want you to feel better.

If you'd rather stay in your own tiny, nasty little world where a muscle twitch is a death sentence, though, what on earth do you expect us to do?

[niknakx]

I'm sorry everyone. I am just scared. I'm sorry for saying things like that but genuinely this is very concerning.
I did get banned, I very politely asked one question and when I received an answer I said thank you and then left it alone. I'm sorry if it came across that I was harassing them in any way.
I have found another neurologist here in Korea who specialises in the disease and has the equipment to perform some tests. Unlike the other EMGs I've had before, this one really scares me to think about getting it because I know they are gonna find some issues. But I really want to see a proper specialist in regards to this. I will try and be more positive.

[NoraB]

I read today that a single isolated fasciculation was the initial sign for 6% of ALS sufferers. I have done so much research and there is literally nothing reassuring found anywhere about this type of muscle fasciculation. It is not normal. The fact it is only in one muscle and stays twitching reputedly after it has been activated means that it is something sinister. I guess now I am just waiting to die. I really wanted a family and kids with my boyfriend one day. I guess that will never happen now. I'm heartbroken.

Did I read on here that you've been banned from the ALS forums?

When I had my breakdown, I was very mentally unwell. Cancer was my main fear and I looked at the cancer forums but I never posted. And I am immensely glad that whatever else was going wrong in my mind at that time, I made a point of not doing that. When the HA fog clears and you start to see things rationally - you will understand how utterly insulting it is to people whose struggle with ALS is real.

Get the help you need to overcome this condition. You don't have ALS, but you do have a horrible mental health disorder. You are unwell my dear; just not in the way that you're imagining..

The dramatic dialogue, both internally and what you write on here will NOT help you. Your brain is listening to every negative/dramatic word you say and is responding by firing out those stress hormones which will actually cause neurological type symptoms!

The family you desire is achievable but you need to help yourself first. Trust me, one of my life's biggest regrets is my son watching me break down due to severe health anxiety. If I could go back and change it, I would do so in a heartbeat. In reality, I can't do that so the next best thing is to keep working my @rse off to make sure that it never happens again.

Instead of fixating on a disease that you clearly don't have, why don't you research anxiety? Once you understand how many symptoms anxiety can account for, the stress response (fight or flight) and how our own fearful thoughts keep us in a cycle of anxiety = symptoms = fear= more symptoms = more fear - then you are on the way to understanding this mental disorder and, more importantly being able to overcome it..

RE: 'heartbreak'

Life will knock you down numerous times before you're through. What matters is getting back up again.. (see my signature)

This, now, is you being on the floor, and you need to get back up again and reclaim your life so that you can achieve your dream of a family.

So, enough with the am-drams. It's not helping you. Get the help you need which is a therapist, not a neurologist.

Finally, a little story... something valuable that I learned while scouring the cancer forums...

There was a bloke who'd been given 6 months to live. Years later he was still defying the doctors. He travelled all over America with his Mrs in their camper van. He really lived in his 'extra time'. Maybe more so than in his entire life? His story is one of inspiration, and you can choose to see it as 'heart-breaking' or you can choose to see it as a man who really did have a terminal disease but who chose to grab what life he had left by the proverbial balls! That, plus a few puffs on the old weederoo, kept him going way beyond any of the doctor's expectations.

You, me - everyone on this forum - we're all storytellers. Every minute of the day we are writing our own story. Some plot lines we get to create - others are created for us. But it's totally up to us how we develop those storylines and our own characters. We can choose to be a hero or the victim. I chose to be my own hero. You are currently writing yourself a plotline as a victim..

Wouldn't you rather be a hero?

[niknakx]

That's a very good point. I'm sorry once again for my comments earlier I was in a very dark place. I still am but I am trying to be calmer about it.
My boyfriend arranged an EMG test tomorrow with a neurologist. I am very scared for it but at least it might start me on the track to get some answers.
I had a talk with him earlier about what we will do if it turns out I do have it and we decided that we will get married and travel while I still have the chance.
Don't worry I have spent years looking at the effects of health anxiety on the body and how it can cause things. Unfortunately the twitch I currently have is not something that I can chalk up to anxiety.
The last two times I had anxiety over this I went in for an EMG kinda knowing everything would be okay. This time it is different, I am actively scared of having it done because I am almost certain it's going to show something. But until tomorrow I will try not to think about it. Wish me luck with the test tomorrow. I am so nervous it is unreal. Thank you for trying to help me see rationally. I do really appreciate it.

[Fishmanpa]

Unfortunately the twitch I currently have is not something that I can chalk up to anxiety.

Thing is, you have an explanation. Surgery can and does have side effects. I said in my posts that I have side effects from the surgeries and treatments from my heart issues and cancer. I'm 7 years out from cancer and to this day I can't really feel my feet due to neuropathy. My feet are basically numb and it feels like I'm walking on scrunched up socks all the time in addition to what I call the 'stabbies'. It feels like I'm being stabbed with an ice pick! They cut the left side of my neck open from my ear down and removed two 5+cm cancerous nodes along with 23 additional nodes. To this day, my face and neck are numb on that side and I have a side effect where the tendon spasms and turns into a piece of rebar and the pain actually involuntarily can bring a tear to my eye. So yeah, I don't doubt you have a physical side effect from your surgery. The thing is, like my side effects, it's not sinister in the least. Tell you what. I'll trade you your little foot twitch for my side effects any day!

And like I said, the moderator on the ALS site banned you for creating multiple identities and posting over several years, being told it's not ALS and told not to post so it wasn't just one question. I saw the same thing on the cancer forums I was on while battling the beast and that's what led me to this forum. I followed a couple of posters and found them here. I ended up sticking around to try and offer some reality. I have a daughter who suffers from anxiety and depression and the insight I gained here also helped me help her. So go to your neurologist appointment and get another all clear and then, as many here are saying, treat the real illness.

FMP

[niknakx]

I had my EMG this morning. Sadly it wasn’t clean like I wanted. They found decreased nerve function in my foot which has really upset me. She said she couldn’t find any issues further up my leg, just on my foot. She said it’s evidence of an injury and nerve damage and that it doesn’t look like a muscle disease. I’m still a little freaked out by it. I’m gonna try and believe her but I know it will be hard. I keep thinking it’s just an early sign of the disease but it hasn’t progressed to any weakness yet. I don’t know. I want to be happy but I really wanted a clean result.

[NoraB]

I had my EMG this morning. Sadly it wasn’t clean like I wanted. They found decreased nerve function in my foot which has really upset me. She said she couldn’t find any issues further up my leg, just on my foot. She said it’s evidence of an injury and nerve damage and that it doesn’t look like a muscle disease. I’m still a little freaked out by it. I’m gonna try and believe her but I know it will be hard. I keep thinking it’s just an early sign of the disease but it hasn’t progressed to any weakness yet. I don’t know. I want to be happy but I really wanted a clean result.

So you've had the EMG. You've been told that you don't have muscle disease, but you still don't believe it?

Your HA mind will work with this.

You injured your foot, therefore it's logical for there to be some kind of lingering issue. My brother crushed his foot in a work related accident 30 years ago, and he still has issues. It would be some kind of miracle if his foot was 100% as it was before the accident!

My C section scar might have healed up but the internal scarring means I get pain. My point is that injuries/traumas to the body changes that part of you forever - even if things look normal on the outside..

The quote below is what you wrote in 2017..

I saw my neurologist and told him I was worried about ALS/MND and he said "I wouldn't place my money on that bet because you will lose all your money."

Four years later, here you are. Another EMG which has shown no muscle disease, only that what would be expected with an injury. And you're still choosing to stay on the crazy train.

This morning the train pulled in. That was your cue to get the hell of off and work on the real issue - which is ANXIETY.

"I'm gonna try and believe her"

No you won't and here's why - you used the word 'try'.

NO! HA will work with that!

"but I know it will be hard"

What will be even harder is putting in the graft needed to beat this disorder.

I keep thinking it’s just an early sign of the disease but it hasn’t progressed to any weakness yet. I don’t know. I want to be happy but I really wanted a clean result.

This started in 2017. I would be interested to know what preceded the event which convinced you (then) that you have a muscle disease? What was happening to you, and also around you, at that time?

The bout of HA which led to my breakdown was triggered by my mother's death and all of my HA phases have a trigger. There will be one for you too.

As regards your fear? This is a clear EMG and you can choose to do something about your health anxiety or you can choose to stay on the train. It's that simple.

If you choose to stay on, I'd question why?

Does it suit you to do so? It certainly suits some people on here..

You can have the family you want now. There's nothing stopping you except your own mind.

You have the proof that ALS will not be standing in your way - so focus on making your dream happen and that must start with sorting out the real issue here - which is health anxiety.

[Fishmanpa]

Four years later, here you are. Another EMG which has shown no muscle disease, only that what would be expected with an injury. And you're still choosing to stay on the crazy train.

That about says it all. Add to that the fact you went back to the ALS forum and were banned! There are several members here that have done the same and it frankly sinks my boat!

Please get the help you so desperately need!

FMP

[niknakx]

Hi guys, just wanted to give you an update on everything that has been going on. Thank you all for your messages over the last few weeks. I’ve been trying to keep my thoughts under control but it has been very difficult.
I’m still struggling with what the doctor said but she referred me to a university hospital in the city to get a second opinion.
I do think my right hand has been getting clumsier recently but I’m telling myself that it is just anxiety because I’m hyper focused on everything at the moment. I have been seeing a therapist and have now been on medication for just over 2 weeks now. I do feel somewhat calmer and it has allowed me to regain my appetite which I am grateful for. So at least I am getting energy from food again.
I tried to get an appointment with a specialist in the hospital but they said that you can’t have an appointment with them unless you are seriously showing symptoms. So I have to see a different neurologist for now. I think they will do more tests on me. I am still very nervous with everything that is going on, but I am really trying my best to be somewhat positive no matter how hard it is. I’m trying to keep myself as busy as humanly possible at the moment so I don’t sit and dwell on things.

[NoraB]

I tried to get an appointment with a specialist in the hospital but they said that you can’t have an appointment with them unless you are seriously showing symptoms.

So I have to see a different neurologist for now. I think they will do more tests on me. I am still very nervous with everything that is going on, but I am really trying my best to be somewhat positive no matter how hard it is. I’m trying to keep myself as busy as humanly possible at the moment so I don’t sit and dwell on things.

Keeping busy is useful - as is medication - but not when it prevents you from dealing with the real issue.

To gain control of this mental disorder you have to be able to allow those thoughts in and not react to them with fear.

You need to prepare yourself for the most likely outcome here which is that neurology will tell you that don't have ALS.

Then what?

Unless you address your HA it really doesn't matter what they say - you're unlikely to believe them - and this train will carry on.

You've had this imagined ALS since 2017. Four years.

'This time, it's real'..

You and every other HAer on here! It's always real..

You seem determined to have this disease don't you? In reality, the only 'wasting' that I can see is that of your life in imagining that you have this disease when there's no evidence for it that can't be explained by your foot surgery.

You've written 'second opinion' but in my experience with HA this is most likely the doc hoping that this will convince you and the problem with HA is that 'it' is far more convincing than any doctor or any specialist in their field. These doctors see people every day with the conditions/diseases that we imagine we have and they know that we don't have them but they have very frightened human beings sat in front of them, so what are they to do? Some go down the reassurance route not understanding that this only feeds into the condition. They're trying to be kind but they don't understand the nature of this particular beast. People who are simply anxious will be reassured by a second opinion whereas someone with severe HA will not..

The best thing that you could do for yourself is to knee HA in the proverbial balls, right now, while it's got you in a choke hold. Do this now and you're half way there. Do nothing and you will simply remain as you are - living a life of fear..