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

The other day I noticed how much more sunken in my left foot is around my ankle and side of the foot. It is really genuinely noticeable. I did have surgery to remove a large vein in that area a couple of years ago and I always put my sunken skin down to that. But it appear to have become worse in recent months.
I realised that when I flex my toes upwards the muscle on my right foot is significantly more defined and strong and I can feel it moving when I use it. The left muscle is significantly weaker and smaller. When I flex my toes upwards I can see the muscles in my sunken section of my foot dancing like crazy.
My brain is absolutely convinced that this is it. The other times I worried about having this disease I turned out to be fine, but this time the symptoms are significantly more real and I can see them and feel them. Im scared. Im throwing up from fear, crying and not eating. I feel like a husk and I am terrified. I spoke to a doctor on the phone the other day and he assured me I was alright, but he never saw my feet we just spoke over the phone. I am convinced that this is it. I’m so scared. It feels like I’ve noticed the symptoms super early because I really pay attention to things. I’m terrified guys. I can’t live like this.

I know it's hard to believe, but this is just your HA telling you lies. Trust the doctor and think about ways of learning to manage the anxiety.

I want to believe it so much. That it’s just anxiety, but all the symptoms seem so real. The sunken skin is real because I and people can see it. The worm like movements under my skin are real because I can see it. I don’t know what to do. I am hope it more than anything that this is once again health anxiety and nothing more. I’m so miserable.

I know what you are feeling. I too am having yet another als spiral. But, I promise you, you are ok. Asymmetry is normal (so my doctor assured me yesterday when I spoke to her about my own!)

Thank you. I really hope so. I think it was doing alright until the muscle started twitching and fluttering like crazy when I tried to flex my toes. I’ve done it since then and it doesn’t happen so I’m hoping it was because I tired out the muscle and it started twitching like that.
I really want it to be nothing again, but I’m just so scared. I sent a video to my old doctor today today showing him my feet. He said that everything was caused by the fact that I had surgery on my foot and that there was nothing to worry about. But I just can’t drop it. I just want to feel ‘normal’ again.

I know that feeling! But with HA we always catastrophize - it’s sort of the nature of the beast.

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He said that everything was caused by the fact that I had surgery on my foot and that there was nothing to worry about.

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y

Thats it then, case closed. Obvious cause and effect, that you already knew about really anyway. Now its time to start repeating the actual facts to yourself over and over, out loud if necessary. E.g. I had surgery on my foot its not surprising there is a sunken area, I am testing my mucles in that area no wonder they are getting tired, one doctor has seen a video and another has spoken to me, both say its nothing.........you have to break the pattern of the 'what ifs' with repetition of reassurance.

I read some medical research today and found out this morning that nerve damage can trigger ALS starting from the place of the damage. So that’s really done a number on my metal health. That and finding out that people with an autoimmune disorder like colitis are also more at risk of developing the the disease. It said that people with an auto immune disease are more at risk of developing ALS from an nerve injury when they have an auto immune disease which I do. I’m honestly so scared it’s unreal. I’m losing weight like crazy and I cry all the time. I spoke to my doctor more and he said it is 100% from the surgery which the muscles are shaking when I flex my toes and that it will never heal because that’s what happened from the surgery. But I just can’t believe it. It’s all adding up with the research. I’m so terrified it’s unreal.

Why on earth were you reading medical research?

You need to start helping yourself here.

I'm truly sorry you're feeling this way. The reality is it's not real this time, but sadly, no amount of reality or reassurance can change your self examination behaviors, googling and mindset. The ALS rabbit hole is deep and dark. I truly hope you find your way out.

FMP

I think because I found the symptoms so early no one believes me and just says it is the surgery damage. I know my foot has been sunken in for many months. At least 6 if not more, but I never noticed the muscles dancing and twitching when I flex my toes until the other day. I’m going to see a neurologist this week hopefully. I am in Korea at the moment so it’s going to be challenging but I need to hear what they say about this when I show them the symptoms.
I made a bet with my boyfriend today. I said that of it turns out not to be that disease I will give him £1000 because I’m so convinced at this point. I’m so scared. I’m only 27 and I just have this terrible gut feeling about this one. I also have an appointment with a therapist tomorrow, but I don’t know how much help it will do.

With the greatest respect, you're deluded.

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Originally Posted by niknakx

I made a bet with my boyfriend today. I said that of it turns out not to be that disease I will give him £1000 because I’m so convinced at this point. I’m so scared. I’m only 27 and I just have this terrible gut feeling about this one. I also have an appointment with a therapist tomorrow, but I don’t know how much help it will do.

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Can I get in on that bet? That's some easy money! :shades:

FMP

I am scared that because I have had health anxiety about this exact thing before no one will believe me and just brush it all aside. Everyone I have spoken to has categorically said I am fine, but I jut feel like this is it. I want more than anything to go back to normal and worry about normal things like visas and what I'm going to do at the weekend rather than thinking about my death.
It has such am effect on everyone around me as well. My mum knows about all this but every time I talk to her she ends up crying. I hate that I'm making everyone feel like this, but I just have absolutely no control of my anxiety. I am permanently scared. I am losing weight like crazy because I can barely even stomach an apple a day and I throw up every morning from fear. I just want to go back to normal! I really hope everyone is right about this and I'm just being silly.

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Originally Posted by niknakx

but I just have absolutely no control of my anxiety. I am permanently scared. I am losing weight like crazy because I can barely even stomach an apple a day and I throw up every morning from fear. I just want to go back to normal! I really hope everyone is right about this and I'm just being silly.

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You have more control than you think. There is within you a 'switch' that just needs to be flicked. It starts with the decision to do something about your disorder.

It's not a 'maybe', or 'I will try' or anything that involves the word 'but...'. It's a very firm decision that you will do whatever it takes to control/overcome health anxiety. By doing this you are sending a message to your HA Gremlin that you mean business..

As it is, the dialogue you're feeding into your mind is, 'I am beyond terrified'. That's a bit dramatic, don't you think? But this is fine dining for HA! Top stuff!! Massive release of stress hormones every, single, time you think like this..

'I think it's real this time'

Yeah, so did I the time I thought I had bowel/ovarian cancer. And the time I thought I had MS or when I was having a stroke/heart attack..

Except that the only person who was convinced of my imminent demise, was me..

I was that convinced, I planned my own funeral. That was in 2017. Still here! And that's because the night before my colonoscopy - which would surely reveal that I was riddled with cancer - I decided I'd had enough of living in absolute fear and accepted whatever was going to happen. That night I was calm as can be. Of course, I didn't have cancer. I was diagnosed with the non-life threatening FMS (fibromyalgia) two years later, and I already knew I had GAD - but that night was my turning point. I've grafted my way back from mental breakdown and I've been working hard ever since to maintain the control over what, for me, has been a lifelong mental disorder..

I'd start saving those pennies to be able to pay your boyfriend that £1000 you've bet him...

I just had a meeting with my phycologist and she said the kind of stuff I was expecting. That I am looking into things too much and trying to make connections that aren't there. I am gonna try and stop googling everything. I have an appointment with a neurologist next Monday. If I see them and they truly believe that nothing is wrong then I will do everything in my power to stop worrying about it and just accept what they have to say. I hope I can do it. I'll keep you updated with how it goes. Honestly if this turns out to be nothing then I will be the happiest girl in the world. I want to be better for my family and partner more than anything. If it turns out to be nothing, then I will be back on here letting you all know and that I am stupid haha.

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Originally Posted by niknakx

Honestly if this turns out to be nothing then I will be the happiest girl in the world.

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Until the next symptom...

Happiness, reassurance is short lived when you have HA. You need the psychologist to help with the real issue, not the neurologist for the imagined one.

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If it turns out to be nothing, then I will be back on here letting you all know and that I am stupid haha.

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When it turns out to be nothing...

You'll keep coming back time and time again until you address the real problem here..

Honestly though the atrophy is very real and very obvious. I know it was sunken in before but it has 100% become worse in the last few months. It is sunken in very far and now I have the faciculstions which I never noticed before. I am beyond scared. I hope the neurologist tells me something on Monday which helps me feel better. I am really hoping for it.

This is totally not to do with ALS, but I once had a considerable indentation in my leg. I was a bit concerned because it had been there a while so I went to the doctor. I had done it to myself, I had been sitting curled up in a chair in front of a computer for hours on end repeatedly in the same position for days and weeks. Fortunately the damage wasn't permanent.

This is 100% permeant. I've had some atrophy for at least a year, but it does appear to have become worse recently. I was never worried before because I knew I had a large vein removed, but now I realise it has gradually become worse and the fasciculations have started. I read a medical paper where they have seen instances of the disease which began from a place of trauma. I think this is what it is. My doctor says it is 100% not that I think it is, but I don't believe him. I just can't shake this gut feeling.

NikNak, the problem is that when you have Health Anxiety, your gut becomes a filthy liar and you can't believe a thing it tells you. Think of it as your own personal Daily Mail if you want; it takes up space in your subconscious and screams "BE AFRAID!" at every single thought that happens to pass through your head.

It's not ALS, you're not the exception, you need to stop reading medical stuff that you're not qualified to understand and get out there and start living.

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Originally Posted by niknakx

This is 100% permeant. I've had some atrophy for at least a year, but it does appear to have become worse recently. I was never worried before because I knew I had a large vein removed, but now I realise it has gradually become worse and the fasciculations have started. I read a medical paper where they have seen instances of the disease which began from a place of trauma. I think this is what it is. My doctor says it is 100% not that I think it is, but I don't believe him. I just can't shake this gut feeling.

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Classic HA.

Do yourself a favour and stop reading medical papers. People with HA scan read and usually stop at the point which 'fits' with their imaginary diagnosis. And believe me, the HA mind will make it fit!

Also, with HA, the more we fixate on something, the more we actually start to 'see' things that are not actually there. It's like body dysmorphia?

Unless you have the necessary qualifications to read and understand medical papers, which are by in large written by physicians for physicians - I suggest that you don't as you are making your HA much worse..

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Originally Posted by NoraB

Also, with HA, the more we fixate on something, the more we actually start to 'see' things that are not actually there. It's like body dysmorphia?

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Many years ago, I saw a Youtube video of a woman who had HA and a fear of ALS. She was talking about how her hands were shrinking, getting weak etc. She's literally holding them up close to the camera and I swear, there was absolutely nothing there. Her mind had her seeing things :wacko: Turns out she was a member here. Surprise, surprise right? The same thing goes when you're deep in the lymph node rabbit hole, finding lumps and bumps that are normal bodily anomalies and turning them into a death sentence.

This thread is a perfect example of the HA pattern that takes place over normal bodily anomalies combined with extreme self-examination behaviors, extreme fixation and the negative mental loop of the rabbit hole.

FMP

But this isn’t a case where I am imagining it. My boyfriend and my friend have told me they can also see the sinking skin and they can physically see and feel the muscle fasciculations under the skin. I would love to say to myself that it is all in my head, but in this case, it’s not. It’s really there. I can see it and feel it. I have atrophy and fasciculations and I am so scared.
My doctors back in the UK said it is all caused by my foot surgery two years ago, but why would the muscles still be twitching after 2 years? Surely they would have stopped by now. I never even noticed it until I was staring at my foot, so I don’t even have a clue how long it’s been doing that. I feel so lost and scared. I want to get out of the rabbit hole, but I can’t shake the feeling about this. I want to get better, but I just keep thinking it’s going to get worse. I see a neurologist on Monday. I’m scared they are going to say something bad, and not be able to tell me everything is okay.

Do you want to recover from your anxiety?

I have beaten my health anxiety twice before. And both times I managed to go about 2 years without a resurgence. It’s just this one thing scares me more than anything else. Everyone around me keeps telling me I am fine and that it’s just anxiety, but I am just so scared I can’t believe anyone. I really hope this neurologist says something to calm me down and explain all this.

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Originally Posted by niknakx

But this isn’t a case where I am imagining it. My boyfriend and my friend have told me they can also see the sinking skin and they can physically see and feel the muscle fasciculations under the skin. I would love to say to myself that it is all in my head, but in this case, it’s not. It’s really there. I can see it and feel it. I have atrophy and fasciculations and I am so scared.

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I have muscle atrophy. My pulse points and all sorts are way more visible than they used to be. This is because my skin is lacking in collagen and is much thinner. Plump skin hides a lot, trust me!

You might be seeing something real but that doesn't mean it's what you imagine it to be.

You've been told what's causing it, yet you continue to go down this road because you have a mental health disorder - health anxiety.

You only know this is happening (twitches etc) because you are fixated on your body.

So you're seeing the neurologist on Monday?

When he/she says there's nothing wrong, what then?

I just researched nerves in the foot and I don’t even think the nerve that controls the muscle I am worried about would have even been affected by the surgery. So I don’t understand how the twitching is caused by the surgery.
If the neurologist can explain what is happening and why. I will listen.

Why do you keep on reading about this when you know it makes you more afraid? Can you not see that this is an unhelpful, self-destructive behaviour?

What happens when the next big worry arises?

I don’t think there will be a next big issue because this will be the one that kills me off.
I was researching to try and make myself feel better. Believe what everyone was saying, but instead it’s just made me believe people even less. Now I’m even more convinced this is the end.

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Originally Posted by niknakx

I don’t think there will be a next big issue because this will be the one that kills me off.
I was researching to try and make myself feel better. Believe what everyone was saying, but instead it’s just made me believe people even less. Now I’m even more convinced this is the end.

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This is a pretty long thread already so I hope no one minds me interjecting, but I am so grateful to have found this forum. My details are different but the story is the same as so many others: sudden, unexplained localized twitch, Dr. Google, concerned primary care doc, cleared by neurologist, huge feeling of relief, twitching doesn't go away, doubts creep in, questions and what if's, nagged by stories of "exceptions to the rule" on the internet, etc., etc., etc.

And like niknakx, was at one point sure that this was it, trying to learn to accept death and figure out how to tell my family. Such a dark time.

I got out of that pit as the time went on and with more reassurance from my neuro, who needless to say is a pretty smart dude.

Still react to twitches with anxiety though. Fears that somehow it was ALS making itself known that it was coming, then somehow evading the neuro's examination, and waiting in the dark to strike when I believe I'm safe. It is not an easy way to live.

Again, grateful to find others going through and those who have gotten to the other side.

Did your twitch only twitch when you were using or flexing the muscle? Mine is in my foot and whenever I even slightly activate the muscle to flex my ropes upwards it begins twitching like crazy and will not stop until I relax the muscle. I keep waking up in the mornings thinking this will might be the day I can no long lift my toes up.

No I noticed it when I simply had my arm on my chair's armrest at work. Sometimes flexing stopped it, sometimes it didn't. Every once in a while it seemed like it would twitch right after I flexed. It was inconsistent which didn't help my anxiety.

This may have been mentioned already, but is it possible you've developed "exercise intolerance" in the foot?

Sorry niknakx, never mind my question on exercise intolerance. I forgot that you had surgery on it and that's why it's sunken and twitching now. I am sorry you are feeling this way. I used to be like this off and on but never thought I might be dying until I asked Dr. Google.

I am going to hopefully see a neurologist today. I can’t wait any longer to get a professional opinion. I had a complete breakdown in the middle of the night and couldn’t stop crying. So my boyfriend is taking the day off work to take me to the hospital. I am so scared guys.

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Originally Posted by niknakx

But this isn’t a case where I am imagining it. My boyfriend and my friend have told me they can also see the sinking skin and they can physically see and feel the muscle fasciculations under the skin. I would love to say to myself that it is all in my head, but in this case, it’s not. It’s really there. I can see it and feel it. I have atrophy and fasciculations and I am so scared.
My doctors back in the UK said it is all caused by my foot surgery two years ago, but why would the muscles still be twitching after 2 years? Surely they would have stopped by now. I never even noticed it until I was staring at my foot, so I don’t even have a clue how long it’s been doing that. I feel so lost and scared. I want to get out of the rabbit hole, but I can’t shake the feeling about this. I want to get better, but I just keep thinking it’s going to get worse. I see a neurologist on Monday. I’m scared they are going to say something bad, and not be able to tell me everything is okay.

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I've had two heart attacks, triple bypass, stents and Stage IVa H&N cancer between 2007 and 2013. The side effects from all of that are real just as the side effects from your foot surgery are real. It doesn't mean you or I have some deadly life threatening illness but those side effects are a permanent reminder of what you and I went through. It just means we have side effects and sometimes we have to live with them as unpleasant as they can be.

Anyway... Let us know what the doctor says. 'Told Ya So Gang' on standby :winks: When you get the all clear, perhaps it would be time to treat the real issue.

FMP

I just saw a neurologist. She did some basic strength tests on me, did my reflexes and examined my foot. She couldn’t find anything wrong at all. I got her to feel my fasciculations and she said it was my pulse, which it isn’t. I’m anxious but I’m not stupid.
She then told me a bunch of stuff about how the disease starts at the top of the legs or arms, which I know isn’t true. So as soon as she said that I started doubting things she was saying. She said if it was the disease I would have a foot drop which isn’t necessarily true.

I am brand-spanking new here so I can't really comment on what the doctor said but I am sorry that you felt you couldn't trust her judgment. It is so hard when our brains want definitive answers. But even after I got the OK from a neuromuscular MD that I trusted, I still get doubts now and then. I feel for what you are going through.

I just want the fasciculations on my foot to stop. They are scaring me. One localised point and only freaks out when I activate the muscle even a little bit. I mean I can’t think of anything else that would cause that at all. I was feeling better for a few hours, but my mood is back to zero again and I am scared. I just feel like I’m waiting for my foot to drop or not be able to lift my toes.

It's a twitch, that's all. You've had two separate medical practitioners tell you there's nothing physically wrong with you.

You need to get the anxiety under control, that's the key to getting shot of those awful feelings. I know I sound harsh but I really do hope you can move past this.