ALS fear - struggling

[Worried_91]

Hi guys

I'm new here, although have suffered quite badly with health anxiety for nearly 4 years. I've diagnosed myself with all sorts but the newest thing is ALS or MND.

A few weeks ago I noticed tingling in my hands and initially thought it was because of the colder weather. However since then I've experienced a sort of pain in my fingers and palm. Twitches all over, a heavy feeling in my forearm and almost like it's internally vibrating if I hold something.

I've also had very minor cramps in my right hand and forearm and what I believe looks like muscle atrophy in my right hand when compared to my left.

I'd be so grateful if anyone could help calm me down, I can't shake the feeling that this time I really have a terrible, terminal disease.

Kind regards

[Fishmanpa]

Please read THIS... (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!)

Positive thoughts

[Worried_91]

Hi Fishman

Thank you loads for your reply. I've seen you're a very reassuring presence on this forum.

I did see that post actually. However, I've still managed to convince myself I've got ALS. I just hate how much control this is having.

Has anybody else with this fear experienced heaviness in their forearm? Is there anyway strength can be tested at home that would point away from ALS?

Sorry about this. I've lost a lot of sleep freaking out about the possibility I only have a couple of years left, erghhh.

Thanks again

[Fishmanpa]

Again... perhaps you need to read this part over and over... Everything you speak of is about feeling....

Clinical Weakness—ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work

Positive thoughts

[Worried_91]

Thanks again Fishman.

I try and hold onto this piece of information as reassurance that I may not have ALS. However, I have read of stories where people have only experienced cramps or gradual weakness which has me concerned.

Sorry, I don't mean to sound negative, I'm just hating how much this is affecting me right now. I wish I could escape this hell hole.

[Fishmanpa]

You don't have ALS but I do hope you feel better soon.

FMP

[NoraB]

Thanks again Fishman.

I try and hold onto this piece of information as reassurance that I may not have ALS. However, I have read of stories where people have only experienced cramps or gradual weakness which has me concerned.

Your HA mind will not hold onto what Fish has told you. You will have forgotten that altogether in a few days (or even hours)

There will always be stories like this, some first hand, some second or third hand but you don't know if they are true and even if they are - you don't have all the facts.


I wish I could escape this hell hole.

You can escape, but you need to first understand that it's you who is keeping you in this hell hole.

[Worried_91]

This is very true, thank you Nora.

Just wondering, I've been having odd sensations in my left arm. If it were als how long would it take to go from one arm to another?

[nomorepanic]

You don't have ALS so you don't need to wonder about these things.

Are you getting any help for the HA?

[Worried_91]

I'm experience what feels like nerve pain in my left arm, it's so frustrating!

I am taking citalopram 20mg. I was seeing a therapist but my HA had calmed a lot buy now its in high gear

[Worried_91]

So the tingling has come back in my hands and arms, can only think this is ALS, when will this stop?!

[Carys]

Its not, its just not. Even the words 'come back' are an indication of how this is not ALS. You are looking for a diagnosis, searching, fearing, imagining, just like so so many before you - and in all honesty if we had a £1 for every person who has stated exactly the things you do on this forum about MND......we would be very rich. Yep, I know it feels real, yes, I know you don't believe us, but what you describe is not ALS. My Dad died of ALS this week, I know a lot about it. You have 4 years of HA behind you, and in your own words 'this is your latest fear', but of course, even me saying that will not help as you will think 'Ah, but this time it really could be/is something'. After 4 years you are well versed in being hyper sensitised to any slight physical feeling created by muscle tension, so the more you imagine this is ALS the stronger your mind will create symptoms. Even 'atrophy' is something people can convince themselves they have !!! Until you take control of those sensations, learn the necessary skills and reassure yourself that they are not this illness, that they are not serious, the longer this fear will last. You can go through another year of this fear, until the length of time itself will be an indication this isn't ALS ;) or you can start working on the list FMP posted to help yourself and not waste that time. You asked
when will this stop?! and the answer is that it will stop when you tackle the HA. I don't mean this to sound harsh, and I'm sorry you are struggling, so hope you take the post in the spirit in which it is intended - to help.

[glassgirlw]

Carys - so sorry for the loss of your dad this week. Thoughts are with you and your family. :hugs:

[NoraB]

So the tingling has come back in my hands and arms, can only think this is ALS, when will this stop?!

It'll stop when you start breathing properly and stop imagining you have ALS based on your NORMAL anxiety symptoms.

Go back to Fishmanpa's ALS post and keep reading it until it goes in. Every time you start to make another, 'tingling' comment - STOP - and go back and read his post.

You need to address the real issue here which is so obviously anxiety.

[Worried_91]

Carys,

I'm so, so sorry for the loss of your Dad. I can't imagine how hard it must be for you at this time.

Thank you for your reply to my post, I do find it easier to rationalise when I see others experience the same. It's also amazing at how strong our minds are at deceiving us and making us hold onto slight symptoms we feel.

Thanks again

[Worried_91]

Hi guys

I've recently been having a fear of ALS due to feelings of weakness and aches in my right arm/hand followed by twitching all over.

However the most disruptive and frustrating symptom I have at the moment is facial twitching. It's not an eye twitch but an almost constant twitch either side of my nose. I can see it if I look close in the mirror. This is making me feel more anxious and positive I have ALS.

I was wondering if anybody has had this specific facial twitch? I've had it for over a week now and hoping maybe someone can relate!

Thanks for reading

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

[Worried_91]

Sorry to message again.

Just hoping someone can provide a bit of reassurance as I'm trying my best not to full blown panic.

I can notice a twitch just above my right cheek and can constantly see it if I look in the mirror. Has anybody else had this symptom?

Thanks

[Fishmanpa]

Please read THIS... (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!)

FMP

[Worried_91]

Me again,

Ugh, I'm really finding it hard to believe this isn't ALS. I've just been for a run and it was super cold. But my right hand/arm is more difficult to move than my left. My right hand and arm also feel more fatigued which has me thinking the muscles are wasting.

I wish this would all go away, it's playing havoc on my mental health.

[Fishmanpa]

Please read THIS... (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!)

FMP

[Carys]

I wish this would all go away, it's playing havoc on my mental health.


Wrong way around. Its your mental health wreaking the havoc, and only when you deal with that will..... it 'go away'.

[Worried_91]

Hi everyone

It's me again. I'm now convinced both my arms/ hands are getting weaker which is worrying me. Also been having twitches in the back of my thigh, ugh.