Fearing ALS

[Fishmanpa]

Am I right saying that with ALS things never get better even slightly?

You know the answer to that!

Positive thoughts

[utrocket09]

Ankylosing spondylitis doesn’t cause this but it is an inflammatory condition and I will talk to my rheumatologist about my legs. Sounds more neuro though but could be inflammatory I guess.

Actually ankylosing spondylitis does cause pain and numbness in the legs. But since you already know you have ALS, it will fall on deaf ears.

[MyNameIsTerry]

I see the points and thank you Terry for your post.

What I find strange is that my legs feel worse when lying down as far as burning and twitching goes. I can’t walk much as I feel wobbly but if I walk a bit and do some squats and stuff the legs hurt and burn a bit less.

But then I’m always back to square one the next day.

And Terry, if I’m shaking going down stairs wouldn’t that be clinical weakness and not perceived?

Seymour, if you hit the weights hard you would get DOMS the next day. You are stiff as a board. One of the recommended things to helo with this is light exercise. The body starts pumping blood around bringing nutrients that are repairing the muscle damage.

Cold muscles suffer more than warm muscles when they have been under stress.

I've been doing a load of heavy gardening work over the past few weeks. A couple of days ago I was digging out a stubborn tree and had to resort to taking a short axe to the roots. The next day my forearm was aching like mad. Moving it around helped and getting back in the garden doing more work warmed up the muscles and took the aches away. When I stopped they drifted back as the muscles cooled.

You are sedentary at the moment and getting back into exercise will take some time to adjust. Just doing nothing for a couple of months as enough for me to be knackered walking a few streets. We assume we just bounce back but not when there is some level of illness involved that is taking it's toll on your body (and that doesn't stop if you become sedentary).

As far as twitches go I would expect you to have it when sitting or lying. When moving they likely go. All that adrenaline and cortisol has to go somewhere and it's floating around in your bloodstream.

One of my longest running symptoms is the vibration thing people often calling the buzzing bees. It's a form of paraesthesia. But if I get up or move about I rarely feel it (might have felt it slightly when I was at my worst). Sit down again and it may return.

This is what you seem to be saying with the twitches.

[Fishmanpa]

Am I right saying that with ALS things never get better even slightly?

The bottom line is that you and the others posting on this thread don't have anything sinister going on. Seymour, you've been diagnosed by three medical professionals with severe health anxiety. Darkside is well... Darkside , and has been in this pattern for years and the OP (AJG) has been given an explanation for the symptoms and already is showing positive signs of acceptance and recovery.

To continue to post and enable this behavior is counterproductive and actually harmful and hindering forward progress. IMO, this thread should be closed.

Positive thoughts

[Seymour]

Actually ankylosing spondylitis does cause pain and numbness in the legs. But since you already know you have ALS, it will fall on deaf ears.

It can cause pain from inflammation of the sacroiliac joints but I had that and it does not feel the same. I have had this disease for 10 years and I’ve researched it extensively, suffered from it and had lengthy conversations with my rheumatologist about it and I very well know what AS pain feels like. Maybe you think I’m saying a whole lot of nonsense about ALS but I know ankylosing spondylitis extremely well. AS pain is located in certain places and feels a certain distinct way because it affects the spine and joints, not the muscles. When it comes to AS I know my stuff.

Seymour, if you hit the weights hard you would get DOMS the next day. You are stiff as a board. One of the recommended things to helo with this is light exercise. The body starts pumping blood around bringing nutrients that are repairing the muscle damage.

Cold muscles suffer more than warm muscles when they have been under stress.

I've been doing a load of heavy gardening work over the past few weeks. A couple of days ago I was digging out a stubborn tree and had to resort to taking a short axe to the roots. The next day my forearm was aching like mad. Moving it around helped and getting back in the garden doing more work warmed up the muscles and took the aches away. When I stopped they drifted back as the muscles cooled.

You are sedentary at the moment and getting back into exercise will take some time to adjust. Just doing nothing for a couple of months as enough for me to be knackered walking a few streets. We assume we just bounce back but not when there is some level of illness involved that is taking it's toll on your body (and that doesn't stop if you become sedentary).

As far as twitches go I would expect you to have it when sitting or lying. When moving they likely go. All that adrenaline and cortisol has to go somewhere and it's floating around in your bloodstream.

One of my longest running symptoms is the vibration thing people often calling the buzzing bees. It's a form of paraesthesia. But if I get up or move about I rarely feel it (might have felt it slightly when I was at my worst). Sit down again and it may return.

This is what you seem to be saying with the twitches.

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

[KK77]

To continue to post and enable this behavior is counterproductive and actually harmful and hindering forward progress. IMO, this thread should be closed.

Positive thoughts

Seymour also has the typical rude, dismissive and impertinent attitude when challenged

[KK77]

It can cause pain from inflammation of the sacroiliac joints but I had that and it does not feel the same. I have had this disease for 10 years and I’ve researched it extensively, suffered from it and had lengthy conversations with my rheumatologist about it and I very well know what AS pain feels like. Maybe you think I’m saying a whole lot of nonsense about ALS but I know ankylosing spondylitis extremely well. AS pain is located in certain places and feels a certain distinct way because it affects the spine and joints, not the muscles. When it comes to AS I know my stuff.

Yet you don't appear to know that the muscles are attached to and affected by the spine and joints.

[AJG]

Funny thing is my boyfriend just told me he gets twitches daily as well and I know his legs get crampy or gets numbness in the legs. My neurologist told me he gets twitches as well. However, none of those people unlike me have health anxiety and don't over analyze it. I am trying to pay less attention to it and focusing on my medicine taper, most of my twitches now happen in the morning when I wake up. It will be a long road ahead with the taper and getting point of this terrible anxiety and depression. I probably will do my nerve study in november even though my neurologist said it is a waste and it will only raise my creatine kinese levels again. I think this way I can put everything to bed once and for all. I honestly kind of accepted things whatever happens happens. I refuse to live like this.

[Seymour]

Yet you don't appear to know that the muscles are attached to and affected by the spine and joints.

Do you have AS?

[utrocket09]

It can cause pain from inflammation of the sacroiliac joints but I had that and it does not feel the same. I have had this disease for 10 years and I’ve researched it extensively, suffered from it and had lengthy conversations with my rheumatologist about it and I very well know what AS pain feels like. Maybe you think I’m saying a whole lot of nonsense about ALS but I know ankylosing spondylitis extremely well. AS pain is located in certain places and feels a certain distinct way because it affects the spine and joints, not the muscles. When it comes to AS I know my stuff..

Then you would know that AS causes muscle pain and spasms. Not just the joints. But again, you are going to be rude and act like you continue to know better.