How to deal with the anxiety while waiting

Investigation30

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Nov 24, 2024
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Learn about ALS
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Hello, I’m a 30 year old from the uk who is under investigation for neuromuscular disease. I am seeing a neurologist and waiting for an appointment for my EMG. The neurologist said he can’t rule out MND based on symptoms but is also considering nerve overexcitibility disorders. He doesn’t believe it’s MS but I will have an MRI to rule it out.

I have had bloods done already and waiting results although electrolytes/ thyroid is fine and my CK is slightly elevated it was repeated after a week and went from just below top of normal range to elevated.

It started out with a suspected tennis injury, thought it was just a trapped nerve and then the twitches started. It’s been around 8 weeks of twitches all over the body. My arm is getting progressively weaker, I can still use it but feels like I’ve had a long gym day all the time. I’m struggling with fine movements like buttons etc and have a slight tremor. The weakness is now felt in my legs as well but not as much. When walking my legs feel like a strange mix of boulders but also like jelly.

My arm feels so stiff while the weakness started more in the forearm it’s now stiffness in the bicep and the shoulder blade area. It constantly feels like I need to move it but the stiffness doesn’t disappear.

The worst is the anxiety, the symptoms above are the ones I can stay are objectively there but then there’s the symptoms I know are caused by feeling anxious. I’m also autistic so struggling with the lack of clarity, knowing what is wrong will help me process it.

There’s currently up to a 12 week wait for an EMG. If anyone is London based and knows of anywhere I can pay to get one sooner please let me know.
 
If the arm and leg problems came on relatively quickly together, ALS is low on the possibility list. There are several muscle disorders as well as systemic problems like post-viral syndromes that affect the muscles directly rather than killing the nerve cells that control the muscles as ALS does. So I would try not to focus on ALS.

I would also look to track your sleep with a wearable. Though RLS is usually more about symptoms being better when you move, poor quality sleep can result in excessive movement in sleep, which can be exhausting for muscles and cause issues once you wake up.
 
I have my emg tomorrow and I’m so scared. I have visible atrophy (to others) in my right hand and this is the same hand that I can’t do fine motor control with. Still experiencing full body visible twitching. Still able to move the arm but movement is sluggish. I wish I was experiencing things like tingling and numbness so I could imagine it was something else but I’m not. My grip strength has significantly reduced as well.

I’m almost certain it is MND and I’m struggling to grapple with that at 30. I’m doing everything I can to stay distracted and I’m usually fine until bedtime when I can no longer distract myself but can’t stop thinking about how much life I didn’t get to experience yet.
 
Don’t cross the bridge until you need to. You don’t know what tomorrow will bring. Be prepared unless it is your neurologist you will likely not get same day results
 
started with a suspected tennis injury last October, progressed to fasciculations and cramp.

Originally dx with CFS after 1st clear emg until progressive weakness began in right arm originally spreading to right leg and now started in left arm.

I have clinical weakness, loss of mobility in thumbs (can no longer bend one of them) heavy arms, numb hands on waking. Walking with limp. Consistent fasciculations in affected limbs. I’ve went from being a weight lifter to not feeling comfortable lifting a 1.5l bottle of water.

We’ve ruled out almost all mimics- I have a repeat emg and repeat mri but neuro said we now have to consider ALS.

I’m 30 and heartbroken and angry about how fast I’m progressing
 
I merged your posts -- please stay in this thread.

Keep in mind that considering ALS isn't the same as having it. You said in November you were scheduled for an EMG 29 November -- did that happen? Or is the upcoming EMG a reschedule?
 
That was the first clear emg I mentioned in my post it was clear but there’s been a sharp decline since then- I’ve had two more neuro appointments plus every blood tests known to man and a clear emg.

I didn’t originally have limb failure but now my left thumb has and my right is slowing.

I genuinely still pray for a miracle but now the neuro is rediscussing ALS I’m back to feeling petrified
 
It still sounds very atypical so for me the odds are still in your favor, especially if your first failure is the inability to bend your thumb and you continue feeling fatigued.

You said this started with a tennis injury. In what part was the injury and how did it occur? And did you take any kind of medication or therapy for it back then?
 
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