Help - Deep ALS rabbit hole

[NoraB]

Thanks for replies. Still twitching, still in the ALS hole, still googling 8 hours a day, still looking for reassurance. HA is f**cking horrendous.

It is, but what do you expect when you're choosing to Google? Nobody is forcing you to do this, it's a choice and an incredibly poor one.

Any comfort you gain from seeking reassurance will be obliterated the moment you Google and allow your thoughts to catastrophise..

Also, I don't think you actually understand ALS. There's weakness as in tired muscles (like when you've been carrying heavy shopping bags and put them down) and there is can't-hold-onto-a-cup or button your shirt weakness. When we're anxious we tense muscles and the fight or flight response is triggered and if we don't respond to the 'danger' the way we're designed to (run off or fight) then the consequence is muscle tension, shakiness - cramping..

To explain this further..

Fight or flight sends blood to the areas needed for action. Energy is diverted to where its needed, such as the muscles in your arms and legs because you need those to run away or fight the danger. If the energy isn't discharged then there will be muscle tension, shakiness - twitching. This is what's happening to you because you are constantly in fight or flight with no discharge of this energy (you're adding to it whenever you Google or think irrationally) and because you have HA you are misunderstanding this normal response for something that you fear but which doesn't actually fit with your symptoms..

I'm always twitching, cramping and feel weak. (I don't have ALS)

You do have a mental health disorder which needs addressing. You need to stop Googling and start working on your health anxiety.

[kyllikki]

Nora's very right. I'll add my own point of view.

Perceived (I am exhausted at the thought of a pushup) and colloquial weakness (I shake like a leaf and only get halfway trying to do a pushup) and clinical weakness (my arms literally won't / can't hold me up) are, in reality, very different things. Do you feel weak with clinical weakness? This is where it gets tricky. I have had real clinical weakness, like 0/5 weakness, from an extensive trauma surgery. Could I feel that? Nope. I would tell my toes to move and they just... wouldn't. Gradually I got to a 1/5. Could I feel the weakness then? Still no. My toes would flicker but still weren't obeying my brain. Then I made 2/5, rapidly coming up to 3/5, then 4/5 as the inflammation came down and the nerve re-learned its job. Could I feel that something was wrong by then? Yes, as I got stronger it became clearer that my toes weren't gripping fully yet. I experienced this as a lack of "oomph" in my ability to move explosively. But because the nerves were healing, they were doing better with every single attempt, not worse. (* * * is the opposite.)

So weirdly I would say that very slight impairment is more notice-able than severe impairment. But here's the thing. * * * impairment isn't as subtle as everyone makes it sound, in that it doesn't relent, it only progresses or spreads -- and it goes pretty quick. In my own almost 10 month saga with this fear, the thing that reassures me the absolute most is that I have put on muscle and gained strength in an area that was badly messed up, colloquially weaker, and very twitchy (indeed, I can still sometimes induce twitches by tapping or contracting the muscles.) That's my R leg from the butt on down. But! I also have a great, imaging-confirmed reason to twitch there: sciatica. I am pretty sure my entire R. leg wouldn't have gotten better if it were * * *. It hasn't. It's gotten better. That's pretty dang conclusive.

Does my HA brain believe that, though? No. My HA brain, after months of being convinced I had foot drop (I didn't, I had sciatica pain and stiffness that was changing my gait) is now convinced I could have bulbar * * *. I have my "reasons" for this, of course, but I am also extremely aware that this is CLASSIC HA thinking, and that my HA brain is not the brain from which I do my best critical thinking :P (One day we'll learn. But will it be today? Naahhhh....)

[Villa07]

Think I’m slowly climbing out of this latest rabbit hole. The aches and pains remain as do the twitches but putting this down to an absolutely exhausted nervous system, also very drained and a bit fed up but hopefully, over the next few weeks, that’ll dissipate as I return to normal. Also managed to hurt the instep of my foot, assume because of relentless strength tests, walking on heels and tip toes can only imagine have now strained something. Thought it might fuel my anxiety further but the fact it’s actual pain means it’s nothing sinister other than constant over use. Thanks to all that replied…..until next time…..

[NoraB]

Thanks to all that replied…..until next time…..

Hopefully you'll work on your HA...

[Villa07]

Still down this bloody rabbit hole. Fasics in calves still there and worse than ever. Hand feels sore and weak, horrible muscular tight feeling in right leg which IÂ’m convinced is muscles dying off and others compensating. IÂ’m in horrible dark place. Anyone else suffer from this extreme health anxiety symptoms or is this big nasty disease a reality?

[kyllikki]

Exact same, Villa. For 11 full months. Yet I can still do a few sets of 20 single leg calf raises off a step, go down to the pitch and run about 10 sprints in a row, do one or two chin ups, sew and tie and undo tight knots in string; wield garden tools and hedge pruning shears; read aloud faster than most people and sing and chug water.

I am twitching a bit less and fearing a bit less, gradually. Do you know what my secret is? Getting prescribed a "child dose" of Fluoxetine after 10 months of talk therapy, and really interrogating myself regarding what's important to me, in life, and what's not.

You can fill this rabbit hole, you really can.

[Villa07]

I wanted to close the loop on this. Saw neurologist today, completely normal thorough exam. Laid bare my fears and she said absolutely no evidence of MND/ALS and more likely benign fasics syndrome although she couldn’t illicit any twitching when she checked (!) like you have all said, the disease simply does not start this way she said they look for weakness and muscle wasting neither of which I have. She has recommended going back to the GP for blood tests for thyroid etc and in the meantime she suspects my stiffness and twitching is a result of something spinal/disc related accentuated by anxiousness.

Since May I have spent countless hours searching symptoms on the internet when I should have been with my family. I’ve also darkened the door of the terminally ill on ALS forums desperate to get reassurance - something I deeply regret

To anyone that comes across this after an internet search, to anyone reading this in a state of absolute panic, please don’t go through the same mental torture as I did. Be rational, see your GP and don’t fall down the rabbit hole and if you do, please PM and me and I’ll share my experience.

To all that offered advice, thank you for your support, wise words and rationality