New Fear, this time it is Als

[popejoan]

Can't believe I jumped to another fear in a week.

Feel like my muscles are so weak. Especially my right hand and leg. The other day I tripped for no reason and felt like I had to drag my leg. My right hand feels so clumsy. I feel like I'm at very beginning stages of Als.

I'm tired all the time, tonight I slept for 10 hours, I'm shaky all the time and my arms are so weak, they are weaker than my legs and my right hand is so weak. I feel like my reflexes are so clumsy, I aim somewhere and my arm goes somewhere else.

I also have low creatinine levels in my blood so I think my muscles are wasting and feel like I have muscle atrophy in my hands. My neck is soo stiff as well sometimes I can't even move it.

I also have muscle twitches and a lumpy throat feeling. I saw my GP and he gave me a neuro exam and he said he thinks I'm alright but I insisted on seeing a neurologist. He told me to get a second opinion from another Gp and said to keep a symptom diary and see him again at the end of Feb.

I had an Mri a month ago and it was clear but I didn't know it doesn't show Als. I feel like now that everything else is ruled out with MRI it must be Als and I'm soo scared. It's worse than cancer fears.

Anyone with muscle weakness? Any help is appreciated, I feel like I can't take this anymore, I'm soo scared.

[wnsos]

Lots of people have it, also the way you're writing makes it clear you do know anxiety is at the root of it. Focus on beating it. You can do it. If it helps any, the ALS ice bucket thing was going on in the midst of my massive bout of HA and as soon as I started reading, my muscles felt weaker and weaker. From what I understand with ALS you don't get gradual weakening, it just stops working.

[robin321]

Hi Popejoan,

I was following your posts around xmas about your stools, colonoscopy, etc..
My wife also has low ferritin and I related to your posts and was happy you got tested and were ok.

Since then I have seen you fear lymphoma, and now ALS...
It is pretty obvious you have underlying anxiety that you are placing on whatever symptoms you perceive.

The more you focus, the more you will notice. That is life... but it doesn't mean anything is wrong. You really need to take this as a wake up call and focus on your mental health.

And I mean that in the most helpful way possible. You seem great and I don't like to see you suffer.

[popejoan]

Hi wnsos, thank you for your answer. When the ice bucket challenge was going on I had no HA so I was ok then, it started just suddenly. I googled and read a lot I can't seem to stop this urge, I read someone woth als saying that it started as perceived weakness for them and gradually clinical weakness happened. I don't know I freaks me out a lot. Can't stop cheking my hand muscles and my tongue and each time it feels like muscles getting smaller. This is so scary.

---------- Post added at 22:39 ---------- Previous post was at 22:36 ----------

Hi Robin 321. Thank you so much for your reply. It really made me tearful. You are right I have a problem and although I'm seeing a therapist and doing whatever I think is best nothing is working. I'm going through a very stressful time and I'm also very lonely in this.
I feel the same for you, I hope your wife is doing fine and you are feeling much better.

[Serenity1990]

Sounds nothing whatsoever like ALS.

I appreciate what you're going through is tough, and it is real. However don't latch on to ALS as this is really nothing at all sinikar to what it looks like. ALS starts in one limb. By the time the twitches start (in that one limb) you would be seriously losing the ability to control the muscles in that limb, by which I mean one day you can pick up a kettle, the next day you can't and you never can again. This would be incredibly obvious to you but as much so to your doctor. Then it would move onto another limb months later, etc etc.

It does not cause a lumpy throat feeling. It causes inability to move the tongue. Which would at some point go through the same process as described above.

ALS is pretty much as bad as it gets when it comes to illnesses. The positive you should take from this is it's patently obvious to your doctor that something serious is wrong. No way in hell would you pass your GP's neuro exam with ALS.

[popejoan]

Hi Serenity, thank you I really appreciate your answer.
Do you know anything about the very beginning of Als? Like does it cause a generalized weakness at first and clumsiness in limbs before you lose your ability to move them? I also feel like my hand muscles are wasting like the thumb muscles look smaller.
Also someone told me if they had low creatinine levels they would immediately demand to see a neurologist. Made me soo scared.
I'm sorry I'm asking too many questions, it's just I read your post on another thread about Ms and it was great so wanted to ask you these.

[Serenity1990]

I know a lot less about ALS than MS tbh, I've never had the symptoms of it so I've never feared it.

Ironically I've had all the symptoms you have though!

However I do know that theres a lot of rubbish on the Internet about it though. I mean a LOT. I have BFS so I lurk on aboutbfs.com quite a bit, and there's literally thousands of threads on there from poor souls who have googled twitching and convinced themselves they have ALS. However the reality is ALS doesn't announce itself with twitching, and I understand it is completely incompatible with all-over twitching!

[popejoan]

I understand, thank you so much. I decided not to google anymore because this is much worse than cancer fears. Even the name of it makes me feel dizzy. This is the worst fear I've experienced by far. Each time I stand up I feel like my legs are not gonna carry me, each time I can't open a jar or something I feel sick and whenever I have a twitch I feel butterflies in my stomach. Sooo so scared :(

[popejoan]

Just realized I have tongue twitches as well. I can't feel them but I looked in the mirror and I have twitches when both my tongue lies at rest in my mouth and when I stick it out. Soo scared at the moment!

[Serenity1990]

Why? You have twitchinf that is (a) widespread and (b) has not been preceded by clinical weakness.

Come on. If you're going to do this health anxiety thing at least do it properly and worry about something you vaguely have the symptoms of!