Still struggling with ALS fears.

[darkside4k]

Hey all,

I'm sad to report I'm still struggling with ALS fears. The soreness in my hands and forearms continues. It's been almost a month now. I do have twitching random places but the soreness in my forearms and hands is the main concern I have. It's like my arms and hands must be wasting away and maybe they are sore from the lack of muscle?

Has anyone else experienced these symptoms at all? So scared and confused. :/

[Catherine S]

Looking at your back threads you posted about his fear on the 1st of this month and got 70 replies! Can you tell us what you need to hear from people here tonight that you didn't hear on that thread?

Are you on any medication to help you cope with this anxiety at the momen?

ISB

[Hancock]

Weakness and atrophy go hand in hand almost. And keep in mind that als patients don't "feel" their muscles wasting, they just stop working because the signal from the brain to the muscle is cut. I just responded to you on my thread. Most als patients don't even realize something is wrong until they can't do basic things like zip in their coat, tie a shoe, open a can, lift a briefcase they've been lifting for years, clip their nails, trip over nothing, drag their foot or scuff their toes constantly, fall down more and more often.

We think it's not obvious because it's hard to imagine that the disease comes on that quickly or presents in that way but it really does. I don't think there's any precursor feelings and if there are weakness would quickly follow, same goes for twitching. If it happens prior to weakness, it follows the twitching relentlessly quick in almost all cases.

And we're talking about a rare disease already.

[Catherine S]

With the greatest of respect, and my long experience on nmp, if 70 replies didn't reassure you on your previous thread, then you really don't need another 70 on this one, because it's just like feeding an addict. I hope you and others can see that. You need to concentrate on your anxiety, rather than seeking constant reassurance about ALS.

Take care

ISB x

[swajj]

Still full of it.

---------- Post added at 16:31 ---------- Previous post was at 16:29 ----------

That was for the OP not you I still believe. But you knew that. :winks:

[Hancock]

Harsh guys, not saying anyone needs constant reassurance but those of us that struggle with this particular fear understand how irrational it is, we understand in all likelihood it's not even a probable statistic and we wouldn't bet on the fact that we are truly sick...but the mind really runs away from something like this. I read through dark sides original post and we've had many people on anxietyzone that would post twice a well falling apart due to this fear. It took a few months after symptom onset to realize they were okay, but the panic was severe enough originally to trigger a whole slew of bodily symptoms and shrewd observations that the brain ties together to this one fear.

I'm not saying coddle anyone, that's the worst thing to do, but blatant disregard and insult isn't necessarily the best course of action for someone that's a few weeks into this particular fear. I would understand after months if that person was still just as paranoid and convinced, and after multiple appointments and tests (hello, bfs community anyone? Don't know how someone can go through five years and 10 emgs and still not be convinced).

Im not trying to start anything but I think we can all relate to the fact that at one point or another, we were just as irrational about one fear or another.

[swajj]

No I can't relate to completely ignoring any advice that people have taken the time to give. Or refusing to even acknowledge it. Nor can I relate to refusing to answer that most important of questions "are you seeking counselling" regardless of how many times it is asked. I don't appreciate the lecture either. Before you make judgements go and research my posts. I'm not here to be harsh but I'm also not here to be taken advantage of.

[Hancock]

I've read your posts, I'm not saying you're in the wrong at all. Seeking reassurance without doing much about it isn't the correct thing to do, I agree. If the concerns are real, addressing them with a doctor first is the best thing to do. If the doctor deems there's nothing physically wrong with their patient, the patient must proceed to either a) begin to cope and rationalize with their bodily symptoms that are most likely stemming from anxiety or somatic disorder b) get on some form of mood altering medication if rationality cannot be reached by themselves c) seek therapy in any form with someone in the mental health field.

Trust me, I'm not trying to lecture and I'm not trying to start anything. My only statement is I can empathize with the irrational fear, and I can empathize with the fact that when our bodies are noisy and continue to be, it doesn't matter what people tell us sometimes because we're too far removed from reality to grasp that yes anxiety can do this and no, it really isn't anything serious.

[nivekc251]

Hi dark. Yes I've had soreness in my arms and hands and it made it seem as if I was weaker. I know it's very scary, and it makes you suspect horrible things. Just realize these are just ideas and don't let them get you anxious just let them go. There are hundreds of reasons why your hands are bothering you stop latching on to the worst and rarest scenario.You know you are ok. If this fear is affecting your quality of life as bad as it seems you should go to a neurologist just for peace of mind, but I can assure you it would be a waste of money. Once you get the clear try talking to a psychologist or tell your neuro about your anxiety. This a health anxiety forum and if posting helps you through the night do so. There will always be someone who has experienced or is experiencing the same fear and will be willing to help.

[swajj]

Everything you just said I already know. You choose to be an enabler, I don't. I will ignore your 'enabling' as long as you ignore my efforts to not enable. That way we can coexist peacefully on the same board. Welcome btw.

[Hancock]

Also as a quick sidenote if it hasn't been said, you likely won't get a referral to a neuro if your doctor examines you and sees no issues. If you per chance do, a neuro won't do any further diagnostic tests unless you fail any part of the clinical exam.

There's plenty of people who have gone to their doctors, begged for referrals, and then begged for emgs for peace of mind and they still didn't get peace of mind. The only time you will be at peace is once you can truly accept that anxiety is capable of doing this to your mind and body.

[Catherine S]

Hancock, there was no blatant disregard or insult at all. Try reading up on some of the threads before you judge any of us.

Alot of ex AZ members have joined nmp and are just jumping in without knowing what the previous situation was, or bothering to look a bit further into it before replying. I realise that's not always practical, but if you see threads were those replying appear to take a tough love approach, then you need to trust that they actually are still trying to help. Sadly, we can't help everyone even though we'd like to, and not everybody is willing to be helped.

So I could use this space to sympathise with the OP, and join in with listing all the reasons why it's not ALS but I know I will be ignored just as countless others have been.

We all have different ways of offering support and your way is your business and not mine, but try not to judge others before you know what it's all about.

Take care
ISB