MND/ALS fear is making my life hell.

[niknakx]

Hi my name is Nikki I'm a 23 year old female, I've been having a crippling fear of ALS/MND for about a month and I am absolutely at my breaking point.

It all started when I was driving home from work one day and I noticed the muscle below my elbow felt very tired and weak, almost like I had been lifting weights beforehand. I ignored it and went on with my life. I kept noticing how tired my arm felt for about a week but ignored it, until I made the dreaded mistake of having a quick search on Google, and you can all imagine the fears it put in my head. One of the first things I saw was a story about a man who noticed his right arm was weaker than his left and that was the first sign.

From that point onwards my life has been absolute hell. I have been to the doctors twice to talk about my arm, the first doctor did a few neuro tests and said he couldn't find anything wrong and to come back in about two weeks. Two weeks later I'm back at the doctors because the symptoms have gotten weirder and worse. I started getting twitching up and down my arm, the weirdest thing being it is always worse first thing in the morning, immediately after I wake up, even from a 10 minute nap my forearm feels numb, weak and almost like it doesn't belong to me. As the day goes on it and my mood get better, but then I fall asleep and the symptoms and stress start over again the next day. The doctor sends me to have some blood tests because she wants to see if I'm deficient in anything. She also put my on Citalopram 10mg to try and calm down my anxiety.

My anxiety is so bad that I have no appetite, I've lost 10 pounds in two weeks, I am having trouble sleeping, my stomach is a mess and I vomit multiple times most mornings. I literally can't be happy because I'm my mind I am already dying and all my family and friends are going to see my die a horrible death. It's all I can think about and it's affecting almost every part of my life. I've also been referred to a mental health team who are going to call me for a phone assessment in just over a week.

I've been to see a chiropractor 4 times and he can't figure it what is wrong either with my arm so he's referring me to have some nerve tests done. No treatment I've had has made it better and I just feel like it's getting worse. I keep feeling like my grip is getting weaker in my hand but I might just be imagining that.

I've had 3 professionals now say it might be a form of RSI but it doesn't seem to fit the symptoms. At this point I'm debating just paying out of my own pocket to go private because I know the wait times for the NHS are insanely long and I can't go on like this anymore. I'd rather been a bit poorer and have my mental stability back than know that I'll have to be like this for another 2-4 months.

I'm so miserable and I can't stand how my worry is making my family so concerned. I feel so guilty for being this way and so stupid, but no matter what I do I can't calm down. I just don't know what to do anymore.

[NancyW]

What is RSI?

Your symptoms could be coming from your neck.

[niknakx]

What is RSI?

Your symptoms could be coming from your neck.

Repetitive strain injury. I've had my neck looked at a few times by the chiropractor and he can't seem to find anything wrong there.

[NancyW]

Repetitive strain injury.

That makes sence.

Unfortunately, I have known 4 people with ALS. I believe you're ok.

As you're experiencing, once the anxiety beast gets hold of you, it's nearly impossible to shake him off.

If it were me, I'd have the nerve study done to rule out ALS, just for peace of mind.

You can't quite trust your symptoms at this point, anxiety lies.

[Fishmanpa]

The ALS Rabbit hole is narrow and deep and it's easy to get stuck once you start the spiral in. I've seen it far too many times.

Please read this.

Positive thoughts

[BazB44]

Youre not alone, bud. Ive been paranoid for 7 months now. Twitching all over, burning sensations, cold sensations, pains on and off, numbing, tingling, stiff fingers on and off. Its worse when I think about it, and im afraid to eat or drink anything from the ocean because of "heavy metals" (even water itself lol). But just know youre not alone

[StirCrazy]

Hi my name is Nikki I'm a 23 year old female, I've been having a crippling fear of ALS/MND for about a month and I am absolutely at my breaking point.

It all started when I was driving home from work one day and I noticed the muscle below my elbow felt very tired and weak, almost like I had been lifting weights beforehand. I ignored it and went on with my life. I kept noticing how tired my arm felt for about a week but ignored it, until I made the dreaded mistake of having a quick search on Google, and you can all imagine the fears it put in my head. One of the first things I saw was a story about a man who noticed his right arm was weaker than his left and that was the first sign.

From that point onwards my life has been absolute hell. I have been to the doctors twice to talk about my arm, the first doctor did a few neuro tests and said he couldn't find anything wrong and to come back in about two weeks. Two weeks later I'm back at the doctors because the symptoms have gotten weirder and worse. I started getting twitching up and down my arm, the weirdest thing being it is always worse first thing in the morning, immediately after I wake up, even from a 10 minute nap my forearm feels numb, weak and almost like it doesn't belong to me. As the day goes on it and my mood get better, but then I fall asleep and the symptoms and stress start over again the next day. The doctor sends me to have some blood tests because she wants to see if I'm deficient in anything. She also put my on Citalopram 10mg to try and calm down my anxiety.

My anxiety is so bad that I have no appetite, I've lost 10 pounds in two weeks, I am having trouble sleeping, my stomach is a mess and I vomit multiple times most mornings. I literally can't be happy because I'm my mind I am already dying and all my family and friends are going to see my die a horrible death. It's all I can think about and it's affecting almost every part of my life. I've also been referred to a mental health team who are going to call me for a phone assessment in just over a week.

I've been to see a chiropractor 4 times and he can't figure it what is wrong either with my arm so he's referring me to have some nerve tests done. No treatment I've had has made it better and I just feel like it's getting worse. I keep feeling like my grip is getting weaker in my hand but I might just be imagining that.

I've had 3 professionals now say it might be a form of RSI but it doesn't seem to fit the symptoms. At this point I'm debating just paying out of my own pocket to go private because I know the wait times for the NHS are insanely long and I can't go on like this anymore. I'd rather been a bit poorer and have my mental stability back than know that I'll have to be like this for another 2-4 months.

I'm so miserable and I can't stand how my worry is making my family so concerned. I feel so guilty for being this way and so stupid, but no matter what I do I can't calm down. I just don't know what to do anymore.

At least your doctor did some neuro tests, so you should be thankful for that. The one I went to was useless - they didn't even check me out at all - not even stuff from page one of the junior doctor's manual.

I immediately changed doctor's surgery.

I am also considering paying for a private consultant. As the waiting is unbearable - it's almost impossible not to search those symptoms again and again.
If I don't have long left to live I'd hate the fact that I spent the last part of my life stressed and constantly on the internet until the small hours.
More worrying is the 'if we had found it sooner then it could have been treatable' scenario.