View Full Version : 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.
He said that everything was caused by the fact that I had surgery on my foot and that there was nothing to worry about.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.
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.
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.
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.
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.
Honestly if this turns out to be nothing then I will be the happiest girl in the world.
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.
If it turns out to be nothing, then I will be back on here letting you all know and that I am stupid haha.
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.
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.
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..
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?
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.
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.
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.
Ren-in-Black
13-07-21, 17:33
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.
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.
Ren-in-Black
13-07-21, 17:43
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?
Ren-in-Black
13-07-21, 22:15
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.
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.
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.
Ren-in-Black
14-07-21, 03:27
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.
I don’t think there will be a next big issue because this will be the one that kills me off.
I've been here numerous times...
I was researching to try and make myself feel better.
This is not a good idea with HA.
Now I’m even more convinced this is the end.
And this is why.
I've had HA since I was five years old. I didn't understand it then, obviously, but those misunderstood anxiety symptoms convinced me that I was dying or I had some hideous disease. Growing pains? Cancer. You get my drift?
42 years later, I finally said 'Enough!'.
I made the decision that I wasn't prepared to live in fear of dying/disease anymore. I'd already got my head around death thanks to my experiences of the 'paranormal' kind, but dying (itself) and leaving my vulnerable son proved to be tricky until I accepted that too.
Four years later my HA is still under control, and I've been tested, believe you me. I've put the effort in, and the time. I've tried anything and everything to help myself and that's what you must do if you want to overcome your health anxiety.
You are going to die one day, and acceptance of this is key to beating this disorder because the root cause is fear of death or dying - which happens to be as natural as birth is.
I really don't think this is the end for you, but that day will eventually come for you as it will for every living thing on this planet. Wouldn't you like to have been able to live some life without fear when that time comes?
Researching will only help you if you can focus only on the real issue, which is anxiety. The problem is that HAers brains home in on cancers and other diseases - totally bypassing the most likely causes of their symptoms, especially anxiety. People don't accept that anxiety can make them feel this ill, but it can, and it does.
People with HA have real medical issues but the HA mind takes them from minor to terminal, and that's what you're doing here. You are hyper focused on your body and so you will notice things now that you haven't noticed before, but which were most likely there. Having an operation, any operation, changes that part of the body to some degree. If not outwardly, inwardly. This is why scar tissue often comes back to bite us on the @ass years later, right? I can see where the docs did my laparoscopy - a simple cut to the belly button area, so how do you imagine an operation like yours will affect the skin? As we age, our skin shrinks and these things can become more visible. But I can assure you 100% that the reality is not as bad as your mind is currently having you believe...
But I believe in reframing thoughts, so, it's possible (albeit very unlikely) that the neurologist could say there's a problem. How will you cope with that? More importantly, how do you want to cope with that? Only, during my CBT therapy, the lovely man asked me if I'd ever actually come close to death. I thought about it and said yes, I had an emergency C section to get my baby out because I was bleeding internally (not that they knew until they opened me up) I wasn't in labour, and we both could have died. Scary, right?
No. I wasn't remotely scared - and that was before they gave me morphine!
Things like that are a mother-to be's nightmare but I was calm and I handled it. I think this is because it was real and the brain tends to handle what's real much better than what's imagined?
So I know that I have the ability to cope in a situation like that, and most people do, even if their initial response is to fall apart. At some point, they pick themselves up and own the experience instead of fearing it.
We all have a choice in how to respond to everything that happens to us, and I find that to be very empowering..
You can change all this right now with the single most important decision that you will beat your health anxiety. Not 'try. No 'buts'. You will do it. because you're no longer going to give your mind free reign. But this will only happen if you want to get better..
Do you?
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.
You wanted a professional opinion but what was the point if you had superior knowledge?
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.
https://giphy.com/gifs/we-ugh-ok-Wf8lxu79Yv5zahttps://giphy.com/gifs/we-ugh-ok-Wf8lxu79Yv5zahttps://media.giphy.com/media/1LsW6b9d6v3ESzgLi2/giphy.gif
The rest? You're discounting TWO medical professionals via Dr. Google and that speaks volumes. I'm truly sorry you're in this rabbit hole. Hope you feel better soon. And please, for the respect of those truly suffering from ALS, stay off their forum :lac:
FMP
I also saw the phycologist today and got given some anti anxiety medication. I didn’t want to go back to medication but I think I really need to now.
Ever since I noticed this twitch on the top of my foot my legs and feet cannot stop twitching and my ankle and legs keep getting shooting pains in them. It has to be anxiety right? Not the initial twitch. That is still there. But these new ones are anxiety right? My mind is making my legs and feet feel so weak right now it is unreal. Literally didn’t notice anything my legs and feet until I randomly found the freakin twitch the other day and got scared.
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.
You need to keep reminding yourself of what the neurologist said to counter your own HA-guided diagnosis and belief that you know better than a professional who sadly sees many patients with true neurological disease. Do you really think a neurologist would fail to spot potential symptoms which needed further tests? What makes you think that you know better? Good old Dr Health Anxiety.
Take the meds to help with your anxiety in general? They may not help the physical symptoms immediately but will put you in a better place to rationalise what is actually happening. Get your anxiety down to a point where you can consider an alternative approach to believing that you know best.
nomorepanic
14-07-21, 18:28
Can I ask how you know so much more than a medical professional about this? Have you studied neurology or is it all just Dr Google advice?
Nora, your post further up this page, I couldn't agree more with each and every word. I have followed the same path myself to acceptance of mortality and have a similar background to you in how that came about. I honestly think your post should be put on many threads here, it is the most helpful thing I've read on here for a long time. :)
I also saw the phycologist today and got given some anti anxiety medication. I didn’t want to go back to medication but I think I really need to now.
Ever since I noticed this twitch on the top of my foot my legs and feet cannot stop twitching and my ankle and legs keep getting shooting pains in them. It has to be anxiety right? Not the initial twitch. That is still there. But these new ones are anxiety right? My mind is making my legs and feet feel so weak right now it is unreal. Literally didn’t notice anything my legs and feet until I randomly found the freakin twitch the other day and got scared.
I see real insight here! You are onto yourself, I think! Which is the first step….
Nora, your post further up this page, I couldn't agree more with each and every word. I have followed the same path myself to acceptance of mortality and have a similar background to you in how that came about. I honestly think your post should be put on many threads here, it is the most helpful thing I've read on here for a long time. :)
Thanks Carys. Having been so ill with HA (and mental breakdown is as low as this disorder goes and still be alive) I want to help as many people on here as I can. I know I will only reach a minority, but even if I make a difference to one person, then my time and effort won't be in vain.
Feedback like yours means a lot to me. Thank you. :bighug1:
I’m having such a bad day. I spent the day going out for a walk to try and make myself feel better, but instead I just saw a bunch of families and cried over how I don’t think I will love long enough to have that.
Last night I realised my index finger on my right hand is incredibly stiff and has a hard time gripping. I actually noticed it the other day and forgot about to, but then I realised last night that it gets stuck and is really stiff. I tried to move it around earlier and once I rested it the whole finger went into spasm and freaked out. It triggered me so much.
Since then I’ve been in a daze, walking around imaging how I’m going to get worse. Seeing elderly people and getting jealous because I feel like I won’t live that long. I had a breakdown at 1am in the morning and walked up to the roof of my apartment block. I am so scared at the moment. I feel lost in my own head.
I feel lost in my own head.
You are lost in your own head mate.
Those random elderly stranger's that you feel jealous of? How do you know that they're not experiencing their own kind of hell? Maybe they've outlived a child or grandchild? Maybe they went to a football match one day and saw horror instead of football. Maybe they have endured physical and mental abuse? Maybe they actually have a terminal disease?
I will say this again...
You can be on this Earth for 100 years and only know sadness and pain. Or you can be here for four years and know only love and happiness..
REFRAME THOSE THOUGHTS!
Have you had your neurologist appointment niknax?
Yes I had my neurologist appointment. She couldn’t find anything wrong with me. Basically said she would only be worried if I had a foot drop or something severe like that. She did some strength tests and reflex tests and they were fine. I just feel like everyone is judging me because it’s a case of the boy who cried wolf. No one will believe me until it’s too late.
I thought you said you would believe what the neurologist said though? Do you feel differently now? X
No I don’t feel better sadly. She couldn’t explain the twitch at all and basically just said I was fine and to stop crying. She said a bunch of random facts about the disease which I’m pretty sure are not true so it made me doubt a lot. The problem is, even if I went and saw a neurologist who specialises in the disease it would still be too early to tell anything anyway. I just feel like I’m waiting for things to get worse. I’m scared.
I can tell you are scared and I do relate. Because I also have HA and struggle to accept what doctors say. And it sounds like she wasn’t being very sympathetic to you. I once saw a neurologist and she said not one of the people who presented to her with twitches (and she saw a saw a lot) went on to have ALS. She said twitching in the absence of clinical weakness was clinically irrelevant. Did your doctor say something similar?
No I don’t feel better sadly. She couldn’t explain the twitch at all and basically just said I was fine and to stop crying. She said a bunch of random facts about the disease which I’m pretty sure are not true so it made me doubt a lot. The problem is, even if I went and saw a neurologist who specialises in the disease it would still be too early to tell anything anyway. I just feel like I’m waiting for things to get worse. I’m scared.
I know you're in a foreign country but is there a way you can get help for your mental state? Based on the fact you've now been banned from the ALS forum for opening multiple accounts over several years, this fear has apparently been something controlling you for some time. I know it's affecting you but perhaps you should take a step back and consider how it's affecting others and those close to you.
FMP
It's not in my head this time and I am getting worse day by day. I was doing strength tests on my foot yesterday and while I can still do most things, I do appear to be less balanced and strong on my left foot. My finger I actually noticed something with it before I was suffering this bout of anxiety. I was writing in a notepad and when I changed to a different pen my index finger felt sluggish and clumsy.
Then a couple of nights ago I was using my fingers to scroll on a tablet and my finger felt really stiff. I can still pick up small items with it and do up buttons one handed but it just feels so much clumsier and more stiff.
I have having video calls with my phycologist from back in the UK and I went to a Korea phycologist with my boyfriend the other day and I was given some medication. Honestly every single day is hell at the moment. I can't eat, I can't sleep. I argue with my boyfriend and mum because they think I am being ridiculous. I just feel like a husk who is waiting until their symptoms become worse and then I will die of a horrible horrible disease. This is the problem with health anxiety, you do it so much in the past that now no one believes you.
Ren-in-Black
16-07-21, 01:50
I can tell you are scared and I do relate. Because I also have HA and struggle to accept what doctors say. And it sounds like she wasn’t being very sympathetic to you. I once saw a neurologist and she said not one of the people who presented to her with twitches (and she saw a saw a lot) went on to have ALS. She said twitching in the absence of clinical weakness was clinically irrelevant. Did your doctor say something similar?
I also have been having doubts about my doctor's reassurance even though he is a really smart guy who is mostly interested in neuromuscular issues and does EMG's all the time. I don't know why it's so hard. I guess because the twitches don't get diagnosed as something else? It's just, "Hey you have these now."
Jojo, I am glad to read what your neurologist said about twitching in the absence of clinical weakness being clinically irrelevant. I need that, like, tattooed on my arm lol. I get scared that the weakness is lying in wait but it has been almost a year of twitching.
Niknakx, sorry that you are still going through this. As it seems you've read a lot about ALS, I'm sure you have also read that it doesn't appear in the hand and the foot at the same time. Maybe that fact can give you some hope that it's still health anxiety to blame?
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.
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?
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.
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?
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.
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
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.
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.
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! :lac: There are several members here that have done the same and it frankly sinks my boat! :mad:
Please get the help you so desperately need!
FMP
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.
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..
Have you thought about why you are so determined to be diagnosed? How would you fill the void if the fear of ALS were lifted for good? You would need another illness/disease to focus on.
Not at all. If I actually got over the fear then I could actually get on with my life. In between the previous flares of Heath anxiety I completely went back to normal. I’ve been perfectly fine for the past 2 years and I really thought I had finally beat my problem until I noticed this twitch.
I promise I am really trying my best to deal with this but it is so difficult. It’s all I think about from morning until night. I really want to be free of this fear but it is difficult. I am trying my hardest. I have moments where I can see through the clouds and I tell myself that I am fine, but it doesn’t last long sadly. I’ll keep working on it.
I promise I am really trying my best to deal with this but it is so difficult. It’s all I think about from morning until night.
I really want to be free of this fear but it is difficult.
I am trying my hardest.
^^^^^^^ Even though it's 'all' you think about morning and night? Where does the trying your hardest bit fit in? :huh:
I’ll keep working on it.
Sounds like you're not actually working on it at all. Or maybe you want to think about changing the dialogue that you're feeding to yourself (and us)
It’s all I think about from morning until night.
This is either true or it isn't but your brain won't give a shit either way. It will respond to what you're thinking and this type of dialogue is just the kind of fodder it craves..
'But' is one the most commonly used words with health anxiety and there's a pattern where some people trawl through the HA mire in posts, then add on something positive at the end. Sometimes it's to fool the reader into thinking that the person is serious about overcoming HA so that they'll get some sympathy? Sometimes it is meant at the time of writing but the intention falls short of actually doing anything about it.
Here is the thing: Overcoming health anxiety IS DIFFICULT.
It's far far easier to come on here and symptom dump and seek reassurance..
There was a film in the 80s. Fame. Lots of teenagers rolling across the bonnet of cars and dancing in the street. Standard movie stuff you literally never see in real life, but there is a great quote from this film...
You want fame? Well fame costs, and right here is where you start paying...
....in sweat.
I'll re-write it for HA rather than the art of dance..
You want to be free from health anxiety? Well recovery costs, and right here is where you start paying...
...in (proverbial) sweat.
You have to pull on those legwarmers (I had two pairs) and a sweatband and be prepared to throw everything you bloody well have at this disorder, and I do mean EVERYTHING!
You have to try anything and everything and keep going no matter what. If one thing doesn't work? Try something else!
When I was having my breakdown (due to HA) I was desperate. I never came on here and symptom-dumped, but I was suffering, believe me! If somebody had told me that rubbing myself in fox shit on a full moon would help me, I'd have done it..
You need to lose the 'buts' in your dialogue. Work only in absolutes. You are going to overcome this. You want your freedom (right?) so you are prepared to graft and for this to take an indefinite amount of time..
Because what you're aiming for is to be faced with a health issue and not go down that hole.
Recovery/control of HA isn't being OK because everything is OK. It's being OK when everything is not OK, OK?
And by 'OK', I mean that being concerned is OK. Scaring yourself shitless? Not OK!
You never went back to 'normal' because you never addressed the issue. Your HA was merely dormant - waiting for the opportunity to kick your @rse once again. And here we are!
HA has has several opportunities to kick me in the proverbial flaps this year - things which would have previously sent me spiralling out of control - but this didn't happen because I grafted to control this disorder by understanding anxiety, challenging my thoughts, and reframing situations - so fear/panic never entered into things..
Most importantly, I faced my fear. That from which this most severe episode of HA came from - which is me dying and leaving my autistic son. Nothing has scared me more. However, with hard work, I've accepted it for the likelihood that it is. I say 'likely' because it's also possible that I could outlive my son, and believe me when I say that if faced with this as a choice, there wouldn't be a micro second of hesitation. I would choose death, and willingly. Having accepted that I won't be here forever, I teach him what I can while I'm here and I know that his brothers would step up if needed. One of my lads works with children with special needs so my autie lad would be in good hands..
Nik, you don't overcome health anxiety by hoping it goes away. As I said, that's not how this works. You deal with the core of the issue which is almost always the fear of death, dying, or of not being here for our loved ones. Whichever it is with you, this is what you need to address, and you will find that the rest falls into place because acceptance is the foundation upon which recovery/control of HA is built - anything short of this is a temporary fix.
I won't apologise for my approach. I am passionate about taking HA by the balls because I was so ill. My sympathy to anyone with HA is a given except I know that sympathy, alone, won't get you out of this hell.
The best people to advise you are the ones who've been at rock bottom and got themselves out, right? That's what I wanted when I was ill. I didn't want sympathy. I wanted the tools to help me free myself, and that's what I want for you, and everybody else currently being held to ransom by their own mind...
Hey everyone, just thought I would give an update on everything going on. I’ve had good days and bad days. I got referred to an ALS specialist and while he thinks it is unlikely to be the disease he is going to do a series of tests.
My last EMG was just on 3 muscles in my left leg and foot. This time he is going to be performing a full body EMG to see if any damage can be found elsewhere.
The medication I am on is doing a better job of keeping me calm although I do have bad days where I cry a lot.
I’ve started getting frequent twitching in my toes at rest and while using the muscle. I also noticed that there is a muscle on my foot that no longer works. It’s only a small movement but I am unable to do it with my toes on my left foot anymore when I was able to previously. Literally no matter how hard I try I cannot use the muscle at all. I’m trying to remain calm. I kept telling myself that as long as I don’t have any clinical weakness then it should be fine. But I now have a muscle that doesn’t work at all, as well as atrophy and twitching.
I’m hoping for good news but I’m not feeling very positive about it.
I’m hoping for good news but I’m not feeling very positive about it.
There's the HA but...
Being referred to a specialist doesn't equate to having a disease. In 2019 I was referred to one of Salford's top neurosurgeons who was doing research into a rare and life limiting disease. As it happened, my long awaited rheumatology app came through just before my phone consultation with this guy. I had already been diagnosed with FMS and I could have ignored this diagnosis but it answered all the questions for me. This was at a time when I'd gained control over my health anxiety, and without medication. Had this not been the case I would no doubt have ignored the non-life-threatening (albeit painful and very life affecting) condition and totally submersed myself in the one which would kill me. I would have made every symptom fit. I would have scared myself into another breakdown. One of the hallmarks of this particular disease is a rash and I do have tiny red marks all over my arms and legs (and which are age-related and barely visible). With the disease there's no mistaking this rash but I would totally have made this fit. I would have diagnosed myself long before the specialist had a chance to say yeah or nay. However, HA was no longer controlling me so I was able to make a rational judgement call and I declined to be tested because I knew I didn't have that disease, and he would have known that if he'd have seen me during the consultation..
The reason I'm telling you this is that I'm trying to help you to see how HA distorts everything. What I'm seeing with you is that you have a foot injury and it's extremely unlikely to injure a part of the body like that and there be no comeback. My C section (12 years ago) healed up nicely on the outside but haunts me internally because there is scarring in there. That episiotomy I had back in the 80s? Those 3 stitches have caused me all kinds of crap after the menopause! :scared15:
I'm confident that this is the case with you. ALS is your fear. You are preparing yourself to be told that you have a muscle disease but you should also be considering what your next step is if you get the all clear - because this is the most likely scenario here.
The other scenario is that maybe you do have this disease? And yes, I am going here because a big part of controlling health anxiety is to accept that things do go wrong with the body and while we can't always control what our bodies are doing, we can control our response. So why not imagine yourself reacting to the news with courage and grace? If the movie of your life was being played on a massive screen in front of hundreds of people, what response would you want them to see? I used to 'see' myself running from consultant's rooms crying - shaking - totally out of control. Now I don't see that. If my thoughts ever do go there, I see myself sitting there calmly saying, 'Ok, so this is real. This is happening. So what next?' And it doesn't even matter if I was to lose it in the consultant's office (I'm human, right?) as long as I can gather myself up again and shift into @rse kicking mode because there's no way that fear is going to write my epilogue!
Have a think about this?
What will you do when you have a full body EMG and there's nothing to be found? I had HA. I know that you're convinced they will find this elsewhere. I was 100% convinced I had cancer, but that's because HA is an exceptionally good liar, manipulator, and deceiver..
All the best to you. X
Thank you Nora, truly your words on this forum are incredibly insightful and thought provoking. You really do say some things that make me rethink everything I’m doing and I am so grateful for you.
You’re right, HA does like to lie to you and distort everything into something worse. I really am trying to be more positive about everything. It is difficult but I really am trying. The other day I was lying on the bed freaking out about twitching I could see in my calf and feet. My boyfriend came and lay beside me and showed me the same part of his body and it was indeed doing the same thing as mine. That did calm me down quite significantly which was nice. I’m hoping this anxiety will keep decreasing and I hope the EMG this week will further help towards getting over this. I really want to go back to worrying about normal things again haha. Like worrying about money or visas haha. Not that I like to worry, but something less life threatening would be nice haha.
Hi everyone, just wanted to give an update on everything that’s going on with me. I saw a neurologist who specialises in the disease in August and he gave me a full EMG of my body. He gave me the results then and there and I saw the results on the computer screen. It had normal limits on all the muscles tested including the one which previously showed abnormalities in the first test. He told me that people do just twitch a lot and 99% of the time it is nothing serious. He gave me some muscle relaxers and told me if anything dramatically changes I should come back to see him. But if not then I don’t need to come back.
That was a month ago, and for the three weeks following this news I went back to normal. Most of the anxiety went away and I was able to start thinking straight again. I even went to my therapist and he was so pleased to hear I was doing so much better.
However, about 5 days ago the bad thoughts started creeping in again. I’ve been wondering why my results on the tests were so different. Why show abnormalities on one but not the other. It’s now been nearly 3 months since I first noticed the atrophy and twitching, and while nothing seems to have changed in respects to the twitching, atrophy or strength I’m still having doubtful thoughts. I keep trying to tell myself that if it was something bad I would imagine I would notice some form of change in 3 months…but who knows. I’m fighting the anxiety as much as I can at the moment and I am trying to not let it consume me again. Sometimes I feel like I have PTSD of my previous health anxiety scares and I am petrified of feeling that way again. It’s so difficult. Literally nothing physical has changed since I got good results and yet here I am worrying again.
You saw a neurologist who specialises in your feared disease. The EMG of your body was normal . Now your HA mindset is "missing" having a health issue to fixate upon so the rumination starts up again..
You need to go back to your therapist now, not the neurologist. It's your choice as to whether you allow your HA to get a grip again after such a positive outcome from your tests which were supervised and read by an expert in the subject.
HopefulforBSF
14-11-21, 20:10
How have you been doing since? Sounds like you are cleared of ALS so I hope your worries have subsided.
Hi HopefulforBSF!
It’s been nearly 5 months since I first noticed the atrophy and twitching. I have been doing better mentally but I still have bad days for sure. Today being one of them. I keep trying to tell myself that it’s been nearly 5 months now and not much if anything has changed really. I keep debating getting another EMG to see if anything had progressed but I’m not sure if I should or not. I think just being patient is the best thing I can do for now. It’s so hard though. I’m trying to keep positive and think of other things, but it would be nice to not have this circling around my mind so much.
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