Potential ALS

[RFC91]

Hi there,

Thank you for taking the time to read this and I hope everyone is doing as well as they can.

To start off towards the end of last year I noticed an off feeling in my left foot, couldn’t actually describe it to be honest, I just felt off balance but it wasn’t noticed by anyone else. I also felt like I wasn’t getting deep breaths as well which wasn’t like me as I’ve never suffered from anxiety etc so I couldn’t actually work out what was going on.

Fast foward to February this year and I started getting twitching constantly in my legs and feet which I found really as I’ve never had them before or noticed them, they’re constant and still there just now and so annoying.

Now we’re in May and my left arm is rigid and feels stiff all the time but wouldn’t be noticeable to anyone else I would say and I have twitches everywhere ranging from my legs and feet to my arms, left shoulder face. It makes my face feel tenser too I would say.

I went private to a neurologist after a doctor confirmed clear blood tests and CT scan etc and he has told me to take ALS off my mind as it’s not that but noticed brisk reflexes on the left side and has ordered an MRI of the spine and head. I don’t think he should be ruling out ALS for sure as surely that’s just not right so early on?

Overall all my symptoms are this:-

Constant stiff/rigid arm which feels totally off but no weakness noted yet. It’s just so hard to describe but the muscle feels so tense like I’ve lifted weights but I haven’t.

Muscle twitching which started in legs and feet and is worse there but is a lot of other places now but not as often as the legs and feet.

Jerking movements at times when lying still which I’ve never had before.

Left foot feels off but again probably not noticeable to others.

Neck stiffness on both sides causing posture issues.

It’s just quite a scary time overall for me if I’m honest as I’ve never had to deal with this type of stuff and I tried to play it off as being in my head but it isn’t.

 

[affected]

I'm so sorry you are experiencing this and I can see how scared you are.

Just like the highly trained neurologist, I can only say - take ALS off your mind. You have decided you have this, even though you don't have the actual symptoms of this disease. It is like you are convinced you have a brain tumour because you have a headache.
It is not however black and white - because it is not ALS does not mean it must be all in your head. However, your conviction it is ALS will only make it harder for your doctors to work in the right direction because you want to steer them to something it is not.

Please, let your doctors do the work, and don't continue posting here as it is not healthy for you at all.

Read this carefully before you leave, it should help you understand why your symptoms are not ALS. All the very best.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[RFC91]

Hi there,

Thank you for the reply.

I understand what you’re saying but it’s definitely hard to get my mind off it. The twitches never bothered me at all until the constant left arm awkwardness and stiffness came and because it hasn’t cleared I’ve no idea why it is. It just feels very rigid and I feel off balance on my left side. I hope he does an EMG after the MRI as I feel it’s all that’ll settle me.

The ongoing symptoms from last year progressing to something new each time is what’s really throwing me off and making me so worried.

 

[affected]

I do understand.
I hope the tests will settle your mind, but so many people find themselves questioning the validity of the results later, so I would respectfully suggest that if you have the tests, be prepared to accept the results.

I also understand that you feel symptoms are progressing, but they are not progressing in an ALS way - you don't have actual failures that a doctor can measure as clinical weakness. If you had progressive clinical weakness, that would be something of concern.

I hope you get some answers soon and a path back to full health.