I've moved on to ALS fears.

[worriermama]

I've been twitching since I was in my late teens. I worried about it a lot when it first started, then read about BFS and assumed it was that. Eventually forgot about it and it improved a lot. I still go through periods where I twitch more, especially when stressed.

Fast forward to the present day... I'm coming off of a really stressful couple of months. Had coxsackievirus I caught from my preschooler and was really sick with that for about a month. Then I started getting more migraines/visual disturbances and dizziness and became convinced I had a brain tumor. During this time I also started twitching again. I ended up with an MRI of my brain which was clear. I also had a normal clinical neuro exam (reflexes etc.).

Well. A couple days after the MRI, when I realized I was still twitching, I started thinking about ALS. Then I started worrying about muscle weakness. Now for the past week my right arm has been feeling fatigued and heavy, from my shoulder down into my forearm. I am not having any problems with my right hand except a bit of trigger finger in my pinky (it pops when I bend it).

I realize that I'm seeking reassurance... and that that's not the best way to cope... but I have two small children and I'm in survival mode.

I guess my question is, if I had ALS to the point where I was twitching all over, would something have shown up on my neuro exam four weeks ago?

And the feeling in my arm can't be clinical weakness, right? I am able to do bicep curls and overhead presses with 12lb weights and I am a very petite woman. I just have this annoying burning tired feeling in that arm when I'm using it.

If my arm were messed up from ALS, wouldn't my hand have to be even worse, because doesn't it start in the hands and spread up the limb?

If I'm honest, the arm stuff started after I started worrying about weakness.

I can also admit that when I get anxious/panicky I can actually feel the twitches start firing off all over my body. Literally all over, from my face down to my toes. When the adrenaline starts pumping, the twitching increases noticeably.

I realize how this all sounds. But I am having such a hard time with it. I had a really stressful few months, as I mentioned. My dad had a melanoma removed and we've been dealing with a lot of run of the mill life stress/upheaval. So I'm not feeling particularly fortified against my HA.

Any veterans of the ALS fear.... I welcome your thoughts.

Thank you!

Editing to add -- my LEFT index finger was twitching up a storm months ago and has since settled down... That hand and arm are fine now. But I find myself worrying that the OLD twitching was benign but this NEW twitching is different/bad.

[Fishmanpa]

Please read this! (http://www.nomorepanic.co.uk/showthread.php?t=196071)

Positive thoughts

[worriermama]

Thanks, that is a great post. I've bookmarked it.

It's so hard to accept the difference between perceived weakness and clinical weakness... My HA says, "But it's not binary! It has to be a spectrum of weakness, and you're very tuned into your body, so you'd probably notice weakness before it became clinically apparent."

:rolleyes:

[Josh1234]

It's not hard to accept the difference when you understand they aren't remotely the same thing. There is no such thing as perceived weakness, because weakness is not a feeling. You're feeling fatigue and hypersensitive nerves. There is no spectrum of weakness that doesn't involve decreases in actual strength, which again, isn't a feeling. Go try and pick up your car. You wont feel anything (besides a sore back)... you simply won't be able to do it. Weakness has no feeling.

[Fishmanpa]

Weakness has no feeling.

That's a profound statement Josh. "Weakness has no feeling"... Like it says in the ALS document. It's about failing, not feeling. It's not like you feel weaker or it feels more difficult to do something, you simply cannot do it at all.

Positive thoughts

[worriermama]

Thank you, that is indeed a really helpful way of putting it.

It's just so hard to break out of the hypervigilant/checking mode once you're in it.

It's funny how I've gone years not worrying about my twitching but now I'm freaking out about it.

[CalvinB]

Hi OP. I'm glad I have came across this thread. I have been suffering from HA for about a year now - and i'm onto ALS. What you are saying is EXACTLY how I am word for word.

Especially saying you noticed the fatigue in your arm AFTER you started to worry about ALS. That is exactly what I am like!!!!!! I'm also only 19 years of ago so I am aware in is extremely extremely extremely rare for people my age to get it so I am just putting it down to my HA.

[pablo0977]

I've been twitching since I was in my late teens. I worried about it a lot when it first started, then read about BFS and assumed it was that. Eventually forgot about it and it improved a lot. I still go through periods where I twitch more, especially when stressed.

This is about as close to textbook BFS as you can get. Twitching for years without demonstrable progression is not ALS, nor is it likely anything serious. It is clear that your condition is directly related to stress/anxiety. Take a bath in some Epsom salts, have a cup of chamomile tea and thank your lucky stars that you have nothing more than health anxiety.

[worriermama]

Hi and thanks so much to all who replied. I'm away with my family for the weekend and still struggling. It seems the toes in my right foot are slightly stronger than those in my left when I flex them and push on them. Is this a normal asymmetry or function of "footedness?"

The left calf also looks very slightly smaller.

I just want to enjoy my family but I feel like a crazy person.

My right arm is feeling a bit better....

I know how this sounds. I really do. This is the kind of post that would make me shake my head if someone else had written it. But I am currently feeling terrified about the left toes thing.

I also saw a van on the freeway yesterday that was covered in ALS awareness stickers and I could see the person in the passenger seat was in a wheelchair. Very triggering, ashamed as I am to admit it.

How do we get ourselves out of these spirals? I don't want to live like this. CBT has never worked for me. Maybe I didn't have a skilled enough therapist. I really tied with it.

[livethelife]

I have been freaking out about this worry the last few weeks. I've been worried about this in the past too. I am 52 years old right now. My boss died from ALS last year and that is always in my mind too.

My symptoms are mostly in my feet. Pain in the tips of my toes and sometimes burning too. I was happy to find that post called ALS and why you don't have it. But still I'm worried. This morning I was convinced that one of my calves was smaller than the other. I was frantic. My husband said why don't we measure them? I first said no but he insisted. I'm glad he did. They were exactly the same size even though to my HA mind I think one looks smaller!

I am still really worried but I really can't say why. Just a feeling that something is wrong. I am trying to keep busy and did lots of exercise today.

Sometimes my feet feel like they are about to cramp but so far I have not had any actual cramps.

I feel like I am waiting for something big to happen. Like not being able to walk or something.

I hate this !