Fearing ALS

[Seymour]

And it may just feel different, but again you don’t have ALS. You always want to turn it into ALS this and ALS that, when you have no symptoms of the sort.

I haven’t mentioned ALS in my post.

[utrocket09]

You say you haven’t mentioned ALS in your post...yet....

Yeah I know it’s not healthy.

Most of the time when it seems like I am arguing with you guys I’m just looking for somebody to tell me again why I probably don’t have ALS.

Foolishly I read ALS forums and found all kinds of testimonies contradicting the sticky on this board. ☹️

So stop with this garbage

[Seymour]

Ok.

[MyNameIsTerry]

Yes twitches happen when sitting or lying. If they happen while I’m up and about I’ve never noticed them.

I know nothing about AS but I remember an older work colleague who was born with a twisted spine. He had flare ups and would spend the week lying on the kitchen floor with his wife stepping over him as he just couldn't move. But he coped with flare ups as the surgery was risky. Is yours influenced by environment i.e. work capacity, weather, stress, etc?

I never answered your question about weakness. I think you have to consider the difference between normal weaknesses due to stress on muscles and clinical weaknesses. For instance, when my mum broke her shoulder in her sixties she had to have physio after healing and for some of that she couldn't even grip a cup of lift her arm above elbow height. The bone was healed but very quickly over weeks her muscle had reduced. With physio it rebounds.

This is what I am trying to get you to understand. Right now your body is being bombarded due to an illness, your mental health. This is messing around with neurotransmitters, hormones, nutrient levels, etc. Try to see it that way. It's not all in your head, we are chemical beings. For instance, we think Serotonin on here can be low but this neurotransmitter is mostly used around the body in such as the gut and the muscles. It is used in muscle signalling. So, when you are burning your way through the food you take are we making enough to keep us going? We know we don't when it comes to vitamins & minerals.

I've had lots of stages over my years and periods where some symptoms take over. I remember over a few months I had some weeks where I slept up to 18 hours in a day. If I was a HAer I would no doubt have been Googling my way all over cancers because of fatigue. But HA has never been part of my anxiety therefore it's just another horrible symptom of my mental health.

How many of us on here have been weak & wobbly going up & down stairs? Stair climbing is exercise and requires balance too. When you are weak all over of course you will find this activity hard. Like I said before I was struggling to walk a few streets and prior to that I walked about 5 miles a day at a good pace. A few months sitting doing nothing had taken a toll on me.

Yes, it's weakness. It's not the kind of clinical weakness found in physical disorders. If you lift weights you gets DOMS the next day and you can find it hard to lift light objects. The body is busy repairing itself. And the cortisol it produced to make you feel like that is there to protect you because it stops you lifting so hard & long that you damage yourself. But cortisol, like the adrenaline that is to protect us, becomes a problem in mental health because it's getting pumped out too much and for too long. You know longer feel rough getting up and shake it off, you feel like you've got a bad hangover half the day.

[Seymour]

What’s the best thing to do, gentle exercise?

[MyNameIsTerry]

What’s the best thing to do, gentle exercise?

Walking that you are doing. Try something like Progressive Muscle Relaxation (PMR) which is an old technique for remaxing muscles and working on body focus.

I would try and do some of the reading you said you enjoy too. It can be very hard to concentrate so just do what you can whether it's just a page or chapter. Sometimes you might find if you stick with it for 10 minutes you can focus more on the book and this is very helpful to you as your mind is redirected away from constant focus on anxiety.

[Seymour]

Thanks Terry appreciate it.

[Seymour]

For days now I experience what feels like progressive weakness. When I roll around in bed, or bend to pick something up or squat, my muscles shake from the effort even though it’s nothing. No failure but this shaking is worrying me a lot and bringing me back down the hole after two good days. Legs still burn.

I Googled again and found new diseases like polymyositis, spinal atrophy type 4 and other sinister stuff that could fit my symptoms and of course ALS although having symmetrical symptoms and no functional failure is starting to bring me away from that.

I’m seeing a rheumatologist next Monday. I know she’ll have me do bloodwork and I’m scared of what she’ll discover and what the future holds for me. I don’t want a disease but as my symptoms aren’t subsiding I’m kind of throwing the towel and being convinced there’s no chance I don’t have anything.

Do you guys think I should exercise my muscles to try and bring my strength up? Is there any way all this could be benign even though it aligns with symptoms of serious diseases?

I know you don’t like me but I need to talk. I will be very grateful to anybody who replies.

[BlueIris]

It's not a question of disliking you, Seymour.

This reassurance seeking isn't good for you, though, and nor is the constant Googling. I know it's tough, but you need to try and help yourself recover.

[Seymour]

I know it’s not good to seek reassurance but I can’t function right now. Googling was absolutely stupid as I was doing a lot better mentally. I always think I’ll find something reassuring but it’s always the opposite.

I’m not sure if there is even one person who’s had all my symptoms of weakness, shaking, burning legs and it turned out benign?

I’m going crazy. I don’t want to live like this but I don’t want to die either.