First time poster and trying to be rationale... but..

[Mikeyofboro]

Hi all , I am a first-time poster so please bear with me and pleased to meet you all. I’ve been reading this forum for a few months now and I have found it a real solace particularly some of the sticky threads. My story is really one where I don’t want to admit that maybe I have HA, but having recently been to visit my doctor maybe I need to admit I have.

A few months ago I started having a twitchy eyelid which lasted for about a week, in addition to that my top lip was also twitching.

As someone who likes to be in control my reaction of course was to try and figure out what the symptoms were and what was causing it. Big mistake. As we all know Dr Google starts you down a path to horrible illnesses which why I am here now worried I have a neurological issue.

Over time the twitching in the eye and lip subsided replaced by feeling of hair on my face that wasn’t there and an one and off flushed face. Finally I decided I would go to the doctor because it was frustrating me and be I got myself into a worry that maybe it was something serious. (Am sure a lot of people have been there.... oh and this was before discovering this website !)

At about the same time I went to the doctors my thighs started to ache when walking in particular my right one . Now I am a very fit person who does lots of exercise and has done for many many years.

The doctor did various tests, strength tests looked into my eyes, checking my tongue checking in my ears, balance tests, and a few taps of my knees etc and said they thought they couldn’t see any neurological issues. But to come back in a month or so if nothing had changed .

So Trying to be rational I tried to walk out accepting everything was fine. In reality however the heavy legs haven’t really gone away but it’s not stopped me walking, hiking, kayaking etc so logically I kind of know that if something was seriously wrong I would know about it.

However I think my body is so tuned into every little thing that heavy legs is just the next follow-on thing from the flushed face, all the twitches, all the hair on the first feeling etc

So why am I posting this? Honestly I’m not sure, I think I’m trying to remain calm and logical and this forum has been useful in doing that but I guess I’m here to seek some form of reassurance from fellow sufferers . I know I shouldn’t ask for that but it’s quite easy to fall into a hole.

I should also say just under three years ago, I had an MRI after they found a pineal cyst in my brain whilst checking for tinnitus issues, it was all clear and the neurologist said I had the healthiest brain of a mid 40s man!

So again logically I’m thinking if I had anything serious there would’ve been a good chance of picking something up then. Or indeed I have to trust my doctor in my recent visit.

Maybe it’s just that weird feelings are just that , weird ! I always think I can handle a broken bone or sprain or a cold but when it’s a neurological feeling issue, its out of control and it has potential horrible worst case scenarios.

Sorry for the long post but felt I had to put something down just to help me articulate it and maybe someone might with their experience find some words to reply

Thanks again.

[Speranza]

Hi,

you have all your answers in your head, it's just that tiny question of believing them.
It sounds as though you are good at self-talk - keep that up. My daughter remarked the other day that when I'm anxious it's as though I am super-tuned into everything my body is doing. I'm sure if I thought about it my legs would feel heavy!

Keep telling yourself that the tests would have showed up any neurological problems. Fake it til you make it. But if it gets too stressful be open to asking your GP for help.

[Mikeyofboro]

Thanks for those kind comments . I am trying to stay out of the rabbit hole . I’ve had some worries in the past that seem to come and go every 3 or 4 years and funnily enough it’s usually a worry over something like ms or mnd.

I’m sure I’m not alone in some crazy things like checking my body , panicking if something might look or feel different . I’ll be honest but I paid recently for an in depth eye test despite a test 6 months ago knowing opticians are good at spotting neurological issues . I’ve also had clear bloods so logically clear bloods , no eye issues and a gp saying she didn’t think there were any issues plays exactly into the help stickies . But wow it’s not easy to try and force yourself to forget and ignore it .

Am sure it’s day by day and bit by bit. Determined to not fall into the trap of ignoring helpful comments replying with but , but , but

Thank you again

[Mikeyofboro]

Hi all again . So a few weeks after promising myself I’d be really positive I’m still really having aching heavy thighs almost stiff . I’ve still been able to jog but they are playing on my mind and of course you start down a certain hole ! Have you guys ever had aching muscles long term versus just a short term. I’m not wanting to go to my gp if I can help it but aching legs , odd twitch etc and it does make me start to get a little worried . Thanks for your replies

[Kramze]

Hi all again . So a few weeks after promising myself I’d be really positive I’m still really having aching heavy thighs almost stiff . I’ve still been able to jog but they are playing on my mind and of course you start down a certain hole ! Have you guys ever had aching muscles long term versus just a short term. I’m not wanting to go to my gp if I can help it but aching legs , odd twitch etc and it does make me start to get a little worried . Thanks for your replies

I've had cramps, stiffness, aching, perceived weakness, pain and more symptoms for 3 weeks now... You're not alone... The best way to cope is knowing that ALS is about failing and not feeling. Have you been stressed recently? Stress triggers my health anxiety,maybe there's something similar happening to you atm? I have also experienced heavy and "jelly" like legs, but it went away after some weeks... What you feel might be very real, but at the same time benign and related to you hyperfocusing on your senses. I don't know what I can tell you to lighten up your mood... Personally, my symptoms have improved slowly after no longer feeling stressed... It sure took some time, panic attacks, GP visits, etc. but here I am... Completely fine... You'll also be fine... My shoulder, hand and arm is still stiff, there's tingling, cramps and all sort of werid symptoms... Literally out of nowhere in my life.. Like why? But tbh, the rational part of me is winning the anxiety battle because nothing is progressing for the worse... It's powerful but still all in my mind... Make an appointment with a GP if you feel like that's best though 🌻😊

[Mikeyofboro]

Hi . Thanks for taking the time to reply . I wouldn’t say I’m stressed . Working from home for a year and a bit doesn’t help but actually I don’t think I am. If I’m honest, every 5 or so years I seem to have some form of health issue normally tingles , aches etc and this seems to have resurfaced. I had an mri a few years ago and for the all clear so I’m sure that’s good news plus bloods, eyes etc all good .

It’s just the damned stiff muscles mainly now so I find my self checking if I’m walking normally , the odd check to see if any changes in Muscle sizes etc . Crazy as if a Muscle would change shape over a day !

Your words of wisdom are good and in all honesty it’s been a few months now and I’m sure if it was anything really serious I would have known

[Kramze]

Hi . Thanks for taking the time to reply . I wouldn’t say I’m stressed . Working from home for a year and a bit doesn’t help but actually I don’t think I am. If I’m honest, every 5 or so years I seem to have some form of health issue normally tingles , aches etc and this seems to have resurfaced. I had an mri a few years ago and for the all clear so I’m sure that’s good news plus bloods, eyes etc all good .

It’s just the damned stiff muscles mainly now so I find my self checking if I’m walking normally , the odd check to see if any changes in Muscle sizes etc . Crazy as if a Muscle would change shape over a day !

Your words of wisdom are good and in all honesty it’s been a few months now and I’m sure if it was anything really serious I would have known

Admittedly, I also monitor my body constantly, you're not alone. My current routine consist of checking how stiff one hand/arm/leg is compared to the other, worrying about things like: "why do the movements of my right arm /shoulder feel off compared to the left? Is it because some smaller muscles aren't working anymore? *twists both arms while hyperfocusing on the right* The right one feels less mobile/alive", *walks on heels*, *walks on toes*, *shrugs* "hmm, feels weird" ... A constant mental battle, I almost feel like I'm as far out as schizophrenic people... I think that us HA sufferers should strive to take the mental problems more seriously and seek help... Imagine seeing people that aren't there like a schizophrenic person might do, in contrast, HA sufferers perceive symptoms; they exist, but only in our minds...

Also, as soon as you start monitering your body, try and focus on something else... Focus can be a bitch to control, but if you actively work on it, you'll stop monitoring your body... I did this with success some years ago, and I lived without anxiety for years... Then stress pulled me back in the game 😁🌼

[NoraB]

So why am I posting this? Honestly I’m not sure, I think I’m trying to remain calm and logical and this forum has been useful in doing that but I guess I’m here to seek some form of reassurance from fellow sufferers . I know I shouldn’t ask for that but it’s quite easy to fall into a hole.

I've had everything you've described and a whole lot more. Logic goes through the window with HA. I've seen the cleverest of people succumb to the irrationality of health anxiety! I've also seen them come out the other side.

With respect, reassurance is a quick fix. It's a plaster on a wound that needs stitches, you get me? What you need is psychological therapy.

Maybe it’s just that weird feelings are just that , weird ! I always think I can handle a broken bone or sprain or a cold but when it’s a neurological feeling issue, its out of control and it has potential horrible worst case scenarios.

When we are anxious, and that anxiety is sustained over a long time, our bodies become sensitised and we become 'hypersensitive'. I've had lots of neurological symptoms - the sensation of water tricking down my leg (I checked to see if I'd wet myself!) and cobweb-type sensations on my face. Itchy skin with no visible cause. Twitches, spasms - the works. Falling over. Missing steps. Walking like I'm pissed etc But all tests came back clear re MS, brain tumours etc. Nothing of note on my spine except what you'd expect to find in a middle-aged gal who has been a grafter. I found that many of these weird sensations buggered off when my anxiety levels came down to 'my norm' - which is generally higher than most other people's..

If you want to research anything, learn about the stress response and how it affects the body.

And if you think that your symptoms can't be explained by anxiety - look at Jim Folk's anxiety website and go to 'anxiety symptoms' where there is an in-depth summary of hundreds of symptoms, the explanation to why they occur, and what you can do to ease them. This helped me more times than I can say. Whenever I had a weird symptom/sensation, I'd think 'There's no way this is anxiety!' and there it would be in the list!

All the best.

[Mikeyofboro]

Hi Nora! Many thanks for your post. It’s at times like this that a forum full of kind hearted individuals comes into its own.

I think deep down I know I have nothing major wrong but you are right, at times rationale and logic flies out the window.

I also wonder if I have to accept I’m getting older and slow down a little ! I’m constantly on the move as life is too short right
For sure I’m going to look at your recommendation and maybe this afternoon treat myself to a beer and try to relax ...... after all it is sunny even here in the north east of England !

[NoraB]

For sure I’m going to look at your recommendation and maybe this afternoon treat myself to a beer and try to relax ...... after all it is sunny even here in the north east of England !

Hope you enjoyed your beer and sun.