Can’t believe it

[panic]

Hi all, I have lurked for about a week but alas here I am. I am a 29 year old mother of 2 and am coming to terms with the fact that I most likely have this disease. I remember seeing my uncle get weaker before my eyes (not blood related) and can imagine how scared he was. This is going to sound ironic but here it goes. For the past 7 months I’ve had body wide twitching, I never thought anything of it but was encouraged to see what it was. I became obsessed with als for 2 days before concluding that body wide twitching is not a symptom of als u need weakness.
Great I thought, no als. Hours later I sort of honed in on my left hand/arm. It was so weak. I was convinced it was anxiety because, what are the chances. The weakness never went away. I can feel it even when I’m just sitting here. It is my hand, my forearm, and lastly has spread to the middle of my bicep. I don’t know how to describe what it feels like but when I sit here I can “feel the weakness”. my hand is clumsy but still useable. My heart aches for my kids as they will not have a good situation with me gone. I see my neurologist tomorrow but already know what is going on with me. My mom is a mess, this disease is the worst.

 

[ShiftKicker]

Panic, have you visited a doctor? That is a gigantic leap from twitching to diagnosing yourself with a neurological disease. First step is seeking in person medical help.

 

[panic]

I did see a doctor. The twitching ironically has stopped, it is the left arm/hand weakness that has me terrified for my kids. he didn’t notice any clinical weakness, which I figured he wouldn’t. my left bicep, is so sore and I fear it is from compensating for the weakness in the rest of the arm. I see the neuro tomorrow, but feel in my heart it could be nothing else.

 

[panic]

I found is so ironic that while I was searching this disease for other reasons (twitching), that only then did I even notice how weak my left arm is. just sitting here I can feel it. makes me wish I could just cut the dead weight off.

 

[Bestfriends14]

Feel, Feel, Feel...you are staying your arm "feels" weak. This should bring you relief but ALS doesn't make you feel weak. What you've describe is absolutely not how limb onset works. One day you just can't button a shirt, hold a pen to write or take a heel to toe step. Nothing "feels weak", it just no longer works.

I'm sure your neurologist will concur.

Good luck tomorrow; you're not going to be diagnosed with ALS. I'm confident.

 

[panic]

Thank you for your response, and I really hope your right. It’s funny you never really think about yourself in stuff like this, just worry for your loved ones. I can’t imaginr why there is not more relief for people suffering from this, it blows my mind. while I can “feel” it in a sense, I keep reading posts (I know I should stop) from people with the same complaints as me and they were ultimately diagnosed with this horrid thing. My gp was confused as to what else (no pinched nerve or carpal tunnel) could be causing unilateral weakness. Ugh, crazy how quickly you start appreciating the small stuff.

 

[panic]

At 29 this was the last thing on my mind.

 

[Bestfriends14]

Panic,

What CAN'T you do to come to this conclusion of weakness? Your doctor would have done basic strength tests to determine clinical weakness and if didn't see any, well...you'll have to get that second from the Neuro. I've not read of anyone with perceived weakness being diagnosed with ALS.

Please come back and update with what the Neuro says.

 

[panic]

I will do that. I don’t want to be rude or insensitive but can I ask you how did your weakness start? My uncle passed from this when I was much younger and I never understood what was going on so I don’t know how his started. Did you suddenly (with no warning signs) fail at an every day task? Also do they ever do emgs at your initial appointment? Thanks again.

 

[panic]

And to reply to your question, there isn’t anything I can’t do. you are right, but i honestly can’t hold my arm up. This all happened so fast ( or I just wasn’t paying attention), and it is bizarre to say the very least. I used to have health anxiety but I can’t imagine how anxiety would manifest itself in one arm and cause such profound weakness for weeks.

 

[ShiftKicker]

Please understand there is nothing folks here can do for you. You are not reassured by the replies you have received so far. You've made 7 posts in a few hours. The absolute best advice this forum can give you is seek medical help in person from your doctor. This is not a dismissal of the symptoms that are frightening you- it is an admission we can not help or reassure you due to the panic you are feeling. It is preventing you from being reassured by knowledgeable people and continuing to remain online instead of getting the medical attention you need.

Please go see a doctor. This forum is contributing to your worries and is a waste of both your time and the time of the people who you are not able to believe.

 

[panic]

Your right, I am definitely very anxious and don’t want to annoy anyone. It is for sure consuming my thoughts all day. I will update you guys tomorrow after my appointment.

 

[panic]

Just an update, she found reason for concern with my left hand weakness. i am waiting for an mri but cannot do the emg until Monday. I will update after the big test. Not what I wanted to hear.

 

[panic]

my left calf now feels very weak as well. I hope I’m imagining that but I’m beginning to doubt that. would it spread like that without any noticeable atrophy yet?

 

[Nikki J]

I can tell you after I had my EMG I started feeling that it was spreading rapidly. It wasn’t. The new weakness was all in my head. Not only that but the experience of the imagined weakness was totally different than the actuality when it happened over a year later. And that actuality was a failure not a feeling.

Surely the neurologist told you there are many reason for hand weakness

It would be very unlikely to experience sudden onset of being “ very weak” in a completely different area in MND. You are very lucky to be getting an EMG so quickly