I am beyond terrified. I think it’s real this time.

[NoraB]

I feel lost in my own head.

You are lost in your own head mate.

Those random elderly stranger's that you feel jealous of? How do you know that they're not experiencing their own kind of hell? Maybe they've outlived a child or grandchild? Maybe they went to a football match one day and saw horror instead of football. Maybe they have endured physical and mental abuse? Maybe they actually have a terminal disease?

I will say this again...

You can be on this Earth for 100 years and only know sadness and pain. Or you can be here for four years and know only love and happiness..

REFRAME THOSE THOUGHTS!

[jojo2316]

Have you had your neurologist appointment niknax?

[niknakx]

Yes I had my neurologist appointment. She couldn’t find anything wrong with me. Basically said she would only be worried if I had a foot drop or something severe like that. She did some strength tests and reflex tests and they were fine. I just feel like everyone is judging me because it’s a case of the boy who cried wolf. No one will believe me until it’s too late.

[jojo2316]

I thought you said you would believe what the neurologist said though? Do you feel differently now? X

[niknakx]

No I don’t feel better sadly. She couldn’t explain the twitch at all and basically just said I was fine and to stop crying. She said a bunch of random facts about the disease which I’m pretty sure are not true so it made me doubt a lot. The problem is, even if I went and saw a neurologist who specialises in the disease it would still be too early to tell anything anyway. I just feel like I’m waiting for things to get worse. I’m scared.

[jojo2316]

I can tell you are scared and I do relate. Because I also have HA and struggle to accept what doctors say. And it sounds like she wasn’t being very sympathetic to you. I once saw a neurologist and she said not one of the people who presented to her with twitches (and she saw a saw a lot) went on to have ALS. She said twitching in the absence of clinical weakness was clinically irrelevant. Did your doctor say something similar?

[Fishmanpa]

No I don’t feel better sadly. She couldn’t explain the twitch at all and basically just said I was fine and to stop crying. She said a bunch of random facts about the disease which I’m pretty sure are not true so it made me doubt a lot. The problem is, even if I went and saw a neurologist who specialises in the disease it would still be too early to tell anything anyway. I just feel like I’m waiting for things to get worse. I’m scared.

I know you're in a foreign country but is there a way you can get help for your mental state? Based on the fact you've now been banned from the ALS forum for opening multiple accounts over several years, this fear has apparently been something controlling you for some time. I know it's affecting you but perhaps you should take a step back and consider how it's affecting others and those close to you.

FMP

[niknakx]

It's not in my head this time and I am getting worse day by day. I was doing strength tests on my foot yesterday and while I can still do most things, I do appear to be less balanced and strong on my left foot. My finger I actually noticed something with it before I was suffering this bout of anxiety. I was writing in a notepad and when I changed to a different pen my index finger felt sluggish and clumsy.
Then a couple of nights ago I was using my fingers to scroll on a tablet and my finger felt really stiff. I can still pick up small items with it and do up buttons one handed but it just feels so much clumsier and more stiff.
I have having video calls with my phycologist from back in the UK and I went to a Korea phycologist with my boyfriend the other day and I was given some medication. Honestly every single day is hell at the moment. I can't eat, I can't sleep. I argue with my boyfriend and mum because they think I am being ridiculous. I just feel like a husk who is waiting until their symptoms become worse and then I will die of a horrible horrible disease. This is the problem with health anxiety, you do it so much in the past that now no one believes you.

[Ren-in-Black]

I can tell you are scared and I do relate. Because I also have HA and struggle to accept what doctors say. And it sounds like she wasn’t being very sympathetic to you. I once saw a neurologist and she said not one of the people who presented to her with twitches (and she saw a saw a lot) went on to have ALS. She said twitching in the absence of clinical weakness was clinically irrelevant. Did your doctor say something similar?

I also have been having doubts about my doctor's reassurance even though he is a really smart guy who is mostly interested in neuromuscular issues and does EMG's all the time. I don't know why it's so hard. I guess because the twitches don't get diagnosed as something else? It's just, "Hey you have these now."

Jojo, I am glad to read what your neurologist said about twitching in the absence of clinical weakness being clinically irrelevant. I need that, like, tattooed on my arm lol. I get scared that the weakness is lying in wait but it has been almost a year of twitching.

Niknakx, sorry that you are still going through this. As it seems you've read a lot about ALS, I'm sure you have also read that it doesn't appear in the hand and the foot at the same time. Maybe that fact can give you some hope that it's still health anxiety to blame?

[niknakx]

I read today that a single isolated fasciculation was the initial sign for 6% of ALS sufferers. I have done so much research and there is literally nothing reassuring found anywhere about this type of muscle fasciculation. It is not normal. The fact it is only in one muscle and stays twitching reputedly after it has been activated means that it is something sinister. I guess now I am just waiting to die. I really wanted a family and kids with my boyfriend one day. I guess that will never happen now. I'm heartbroken.