Long time HA patient, now it's MND(ALS)

Sweet T · Feb 24, 2025

Scottio19 said:
Hi All,

I’m a 38M from UK who has been dealing with Health Anxiety for more than 15 years now. I’ve had so many episodes of this it almost sounds like it can’t be real to most people who would read.

After a 2 year period of intense stress I now know I developed PTSD and after those 2 years the situation of that episode ended and I was on top of the world, felt I had my life back the. 6 months later I developed a headache with head pressure that never went away. After a few months of doctor appointments I ended up in hospital due to the fear and panic and got a CT scan of brain which was clear. Due to google I knew I’d need an MRI to be sure so went private and got MRI and lumbar puncture which were clear. I was diagnosed with New Daily Persistent Headache in which I took and still sometimes take Amitriptyline to control. I was content for a 2 years after this and back to normal when my next episode struck.

I developed stomach issues and began to feel itchy, this got worse and once again I began to google and convinced myself I had Pancreatic Cancer. My stools looked different, my pain was intense and I felt I was just living day to day. This went on for a few months until I ended up referred for a colonoscopy due to PC being prevalent in my family (grandfather and uncle). All clear, not long after that result I felt good again.

I had my first child and was married now and not long after he was born ( 3 year after the above) I started itching again and noticed my urine was always very dark…googled again and now I had Lymphoma, after months of panic I went private for Ultrasounds and MRIs (another few £ pounds down) to be told I was fine. The stress I put on my wife during all of this was terrible especially after having a baby.

A couple of years went by again and we now have 2 children and it hits me again. This time it’s my back pain (lower) it’s burning and feels like it could snap in two. Google again during this and I read about the actor in Spartans who had back pain (he was only in his late 20s) and ended up dying from the tumour in his spine. Once again down the rabbit hole and panic sets in. I go to a Back doctor and have yet another MRI for spine now which comes back clear. Months later I develop a cough that doesn’t go and it’s lung cancer, admit myself again into hospital, get X rays and evaluations.

1 year after this the stomach pain hits again to the point I’m passing blood and it’s another colonoscopy after months of fear of dying. (Writing letters to my kids and visiting my wife’s dad’s grave, totally absurd things looking back) I was a mess. Clear colonoscopy again.

Another period of time goes by and it gets me again, this time it’s acid reflux and I’m in panic as google has me seeing all sorts of scary stuff and I end up going private for a Endoscopy which was very expensive.

I finally thought I had it under control after my longest period of time between episodes until 3 months ago. I developed an eye twitch that didn’t stop. It was 24/7 for 6 weeks in total and during this time I panicked about Parkinson’s, Ms and worst of all MND(ALS). 2 weeks after my eye twitch seemed to die down (I still get it a few times a day sometimes) I now have widespread twitching in my legs, claves that pop about. This is visable to the eye and I am terrified as the muscles are contrating not just a feeling. I looked at my tounge in the mirror and it’s moving a lot too shaking all over the place. The past weeks has been hell and maybe the worst I have ever been. My next door neighbour was in her early 40s and passed a year or so ago with MND for reference (which makes my fear tenfold). Google has killed me. I thought after my eye twitch mostly went I’d be ok and this episode would leave me but now the twitching has spread and I’m in bits. I’ve got a doctors appointment but its the ARNurse who ive to see. I also have poor sleep and seem to always wake up around 4am and cant back to sleep after this. Been this was for a while now

I’m convinced I have MND and my life feels over again. I’m in fight or flight mode 24/7

I’ve put off psychiatric help for years but I know this is long overdue but I can’t help the thoughts that this time it’s real, I can see the symptoms with my own eyes. I feel helpless.

The best years of my life wasted due to this and I just want to be better again. Before I could have tests to rule my fears out but now with this there is nothing to rule it out…just endless tests of ruling everything else out until nothing remains. The worst one of the lot, was only a matter of time before my mental disorder took me here.

Sorry for the long winded story of how I got here today. Just need to vent. I know I'm in for a long fight with this and I just feel drained after so many many episodes of my mental health. I just want to be well again, every sensation I fell makes the feeling of dread come flooding back.

Oh my gosh. I could have written your post. I’m so so sorry you are dealing with this awful condition. Health Anxiety is terrible. I relate to your wanting to just enjoy your life again.

There is a Podcast called Disordered. It is really good and loosely based on the Claire Weekes’ books. One of the hosts is English. Give it a try. One of the earlier episodes is about Health Anxiety specifically. Both hosts are therapists now but suffered from this dreadful disease too.
Be kind to yourself. If you are like I am, it feels like your brain gets hijacked by fear then you are ok for a bit. I’ve had HA for years so it feels like I am dealing with something all of the time. Good luck.

Sweet T · Feb 24, 2025

Scottio19 said:
Thank you for replying. I’ll definitely check that out.

I wish I could just ignore what an average person would probably brush off. But my mind won’t allow that and it spirals, the more I think about it the symptoms increase tenfold. How can my brain make my muscles twitch in my limbs, it’s crazy. After all these years of anxiety I’ve never once had a twitch yet here I am today crippled with it.

Silly thing is if my wife comes to me wife any health issues I reassure her and think logically. How is it the end of the world stuff when it’s me? I’m physically mentally exhausted

Health anxiety is so tricky. There is another English therapist that had health anxiety- Cherellethinks. She had loads of twitches. That was her main symptom. She is on Instagram and YouTube. It’s crazy what the mind can do. Good luck.

Jonathan123 · Feb 24, 2025

e. 6 months later I developed a headache with head pressure that never went away. After a few months of doctor appointments I ended up in hospital due to the fear and panic and got a CT scan of brain which was clear. Due to google I knew I’d need an MRI to be sure so went private and got MRI and lumbar puncture which were clear. I was diagnosed with New Daily Persistent Headache in which I took and still sometimes take Amitriptyline to control. I was content for a 2 years after this and back to normal when my next episode struck.

I developed stomach issues and began to feel itchy, this got worse and once again I began to google and convinced myself I had Pancreatic Cancer. My stools looked different, my pain was intense and I felt I was just living day to day. This went on for a few months until I ended up referred for a colonoscopy due to PC being prevalent in my family (grandfather and uncle). All clear, not long after that result I felt good again.

I had my first child and was married now and not long after he was born ( 3 year after the above) I started itching again and noticed my urine was always very dark…googled again and now I had Lymphoma, after months of panic I went private for Ultrasounds and MRIs (another few £ pounds down) to be told I was fine. The stress I put on my wife during all of this was terrible especially after having a baby.

A couple of years went by again and we now have 2 children and it hits me again. This time it’s my back pain (lower) it’s burning and feels like it could snap in two. Google again during this and I read about the actor in Spartans who had back pain (he was only in his late 20s) and ended up dying from the tumour in his spine. Once again down the rabbit hole and panic sets in. I go to a Back doctor and have yet another MRI for spine now which comes back clear. Months later I develop a cough that doesn’t go and it’s lung cancer, admit myself again into hospital, get X rays and evaluations.

1 year after this the stomach pain hits again to the point I’m passing blood and it’s another colonoscopy after months of fear of dying. (Writing letters to my kids and visiting my wife’s dad’s grave, totally absurd things looking back) I was a mess. Clear colonoscopy again.

Another period of time goes by and it gets me again, this time it’s acid reflux and I’m in panic as google has me seeing all sorts of scary stuff and I end up going private for a Endoscopy which was very expensive.

I finally thought I had it under control after my longest period of time between episodes until 3 months ago. I developed an eye twitch that didn’t stop. It was 24/7 for 6 weeks in total and during this time I panicked about Parkinson’s, Ms and worst of all MND(ALS). 2 weeks after my eye twitch seemed to die down (I still get it a few times a day sometimes) I now have widespread twitching in my legs, claves that pop about. This is visable to the eye and I am terrified as the muscles are contrating not just a feeling. I looked at my tounge in the mirror and it’s moving a lot too shaking all over the place. The past weeks has been hell and maybe the worst I have ever been. My next door neighbour was in her early 40s and passed a year or so ago with MND for reference (which makes my fear tenfold). Google has killed me. I thought after my eye twitch mostly went I’d be ok and this episode would leave me but now the twitching has spread and I’m in bits. I’ve got a doctors appointment but its the ARNurse who ive to see. I also have poor sleep and seem to always wake up around 4am and cant back to sleep after this. Been this was for a while now

I’m convinced I have MND and my life feels over again. I’m in fight or flight mode 24/7

I’ve put off psychiatric help for years but I know this is long overdue but I can’t help the thoughts that this time it’s real, I can see the symptoms with my own eyes. I feel helpless.

The best years of my life wasted due to this and I just want to be better again. Before I could have tests to rule my fears out but now with this there is nothing to rule it out…just endless tests of ruling everything else out until nothing remains. The worst one of the lot, was only a matter of time before my mental disorder took me here.

Sorry for the long winded story of how I got here today. Just need to vent. I know I'm in for a long fight with this and I just feel drained after so many many episodes of my mental health. I just want to be well again, every sensation I fell makes the feeling of dread come flooding back.
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Hi. And Welcome. This is a good site and you will find many here who can relate to how you feel. You may be surpised to know that what your post says what I have heard so many times before. It is typical of an HA sufferer. You are not alone.
Sensations and feeling of dread and illness and even death come with anxiety. Those are the symptoms of the 'fight/flight' mechanism, and as such are perfectly normal in the circumstances we create for them to flourish. They are intended to ocur when we are in danger, and as such are useful and a normal reaction to fear. We stoke the fire by adding fear to fear.
If I may say so Googling in anxiety is dangerous. Anxiety, especially HA, feeds on suggestion. We may think we can stop thinking about a certain subject and seem to have forgotten it, but it all goes into the unconscious and nothinhg is ever lost. That is when 'triggers' occur and symptoms come 'out of the blue'.
The feeling of helplessness is also very common. 'What is this thing that seems to have such a hold on me?' 'IT' has only as much power as we give it.
If I may suggest a book from Amazon by Dr. Claire Weekes, 'Essential help for your Nerves'. It's not expensive and it may help a lot in undestanding, and undertsnding is a powerful tool in anxiety. Accept it all without comment or added fear. Difficult? Oh yes, but what is easy in anxiety?

Seryn · Feb 24, 2025

Hey, I constantly battle physical anxiety symptoms too. They will be there everyday from the moment I wake until I go to bed for weeks to months. When it does go it will only be replaced with something new a month or so down the line. It's exhausting. Physical symptoms you can actually see are the worst ones. Leg swelling has sent me spiralling because I can see it. Everyone can. It's not in my head like other symptoms. However trying to think rationally I have to remind myself that it can be a symptom of something trivial and not the worst case scenario like I always jump too. I'm in the UK too. Go speak to your Dr. The waiting list for counselling is around 1year ATM and that's not as bad as usual. Focus on treating the actual "illness" you do have which is health anxiety. Just tell yourself if you can put as much effort into all the other tests then why not put the effort into managing anxiety.

Sweet T · Feb 24, 2025

Scottio19 said:
Yeah I can well believe there are many in the same boat, I didn’t experience anxiety until I was 22 and since then it’s consumed my life.
I watched some of the YouTube videos mentioned above and those really help just now, that woman seems to have been through the mire with this like I’m heading now. I have no weakness and I work out 5 days a week for 2 hours at a time. I have my strength so I’ll hold onto that thought. Twitching is my only symptom which scares me as I’ve never had them before

I’m glad Cherellethinks helped you. Apparently twitching is very common anxiety symptom but benign. Hopefully knowing that can help you put your attention elsewhere.
You are not alone.

by the way, my football/soccer playing daughter gets those twitches in her legs often. You can sometimes even see her muscles cramping up. She thinks it’s cool. Her coach told her she’s working hard and needs to drink more. Didn’t even occur to her to be nervous. Hope that helps.

Philly Phan · Feb 24, 2025

Yes, many of us including me can list a litany of HA "stories" that when read together seem incredible, yet they are our past and even present. I agree about listening to the podcasts and reading Claire Weekes' books. I also believe you can no longer go without attending to the proper medical professional...a mental health practitioner. While I see the wait is a long time in the UK, there are sites, at least in North America where you can get treatment online. There are therapists at this site: I don't know whether they can practice in the UK, but the site is invaluable regardless: anxietycentre.com. You can also Google the site owner who created the site after going through years of horrible symptoms, all anxiety based. His name is Jim Folk. Read his story which he discusses on his site.

You could go get testing to disprove you have MND. As before, you'll go through the mentally painful waiting time. You'll be told you do not have what you fear. you'll feel relieved until...whatever is next. I had my first HA episode in 1991. Yes 33+ years. While my HA is somewhat better after being on an antidepressant and other meds, it's far from perfect.

By the way, I have had non-stop twitching over the years..eye, limbs, chest you name it. I now at least know when I start twitching all it means is that I'm under stress. It doesn't matter that you never twitched before. The human body is weird that way. Anxiety will always seem to find a new way to trick you, while still relying on old standby symptoms it manufactures. Think of anxiety as an evil magician.

With regard to MND/ALS it's about failing, not feeling. You literally wake up one day and no longer have control of say your right hand, or your left foot. The muscles etc. simply are dead. Try picking up a coffee cup, it slips thru your hand right to the floor. ALS is NOT pain, pins & needles or other sensory symptoms. Do ALS patients get twitches? Yes, but that signifies that the muscles are or have now totally died. Twitching comes after the weakness...the true, clinically proven weakness, not the "feeling" that a certain body part is weak.

But this is just putting a band aid on continual new cuts. You need to explore all options to escape the torture of HA.

Jonathan123 · Feb 25, 2025

I have, once again, noiticed those trhree words coming up. 'Fight;, 'Battle'and Struggle, three words that should never be used in anxiety. It is a natural instinct to do all three but we have to try and disregard our natural responses. All these negative responses do is increase the anxiety becuse they take a lot of nervous energy and increase the fear hormone, adernaline.
Calm acceptance is by no means easy, but time and patience can produce positive results.
The basic cause of anxiety is always fear. It has to be. No fear no anxiety.
But we should not try and eliminate fear becuse it was designed to keep us from harm. Way back in the ancient times when caveman was being chased by a Sabre Toothed Tiger, he became fearful and ran fast, to fight would have neen stupid. To save himself he felt fear and fear was the saving of him. But once the Tiger had gone he went about his buiness as normal. I have used the analogy of a herd of sheep and the sheep dog before, but it's a good analogy and worth repeating.
Being chased by the sheep dog the sheep panic and run in all directioins. Once the dog is gone they go back to munching grass as if nothing had happened.
Anxiety sufferers don't do that. They hang on to the fear and thus perpetuate the anxiety. No more fighting 'IT'. There is nothing to fight, no monster out there waiting to devour us. It may not feel like it at the moment, but it's all one big con trick.

EMJ · Mar 11, 2025

Somatic Stress Disorder …. Anxiety is real and the symptoms we feel are real. I can develop a dizzy spell just thinking about it. I know this and have studied mental health nearly my entire life … I have a few college degrees encompassing this subject… spent nearly 40 years as a Licensed Professional Counselor… but my best teacher has been my experience with this condition… and my suffering.
Acceptance of the condition is key … but I still struggle at times. My OCD and the, at times, overwhelming need for control can take me down the path leading to that dreaded Rabbit Hole. Therapy and help from forums like this one can provide such needed support…. The opportunity to chat with others who “know how it feels” is a vital support for me personally. I am in my 70’s and have navigated this condition for nearly my entire life….with some excellent and wonderful years and also with some really really tough times. I think that is probably what the majority of people would say … those suffering from diseases both physical and mental…”life has ups and downs”. Stay focused on the acceptance of yourself .. and steer clear of those rabbit holes…

Long time HA patient, now it's MND(ALS)

Scottio19

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Sweet T

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Scottio19

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Sweet T

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Jonathan123

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Scottio19

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Seryn

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Sweet T

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Philly Phan

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Scottio19

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Jonathan123

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EMJ

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