ALS fears back with a vengeance

[plac8170 7]

I posted on here before about my ALS fears... it initially started with twitching and a weird feeling in my hand like it was working right. I had an EMG scheduled for January but by that time I had somewhat talked myself out of it and cancelled it...

Now for the last few weeks it’s back and worse. Twitching, cramping, real weakness where I’m dropping things. Atrophy in my hand and calf. My legs feel like they’re going to collapse from underneath me. And I tested my reflexes and my legs bounce up and down a little after I do it. Convinced I now have hyper reflexia and clonus. I’m pretty sure it’s game over for me at this point with all of these symptoms. 

I rescheduled my EMG again but can’t get it done until the last week of April. At this point I don’t think I’m so much scared of ALS as I am going through it alone. I have no living family and no friends. I don’t have money to pay for things like a motorized wheelchair or a caretaker. I don’t even know what I’d do if they tell me I have ALS next month. I can just picture my end laying in bed and starving to death because I can’t move and no one is around to help me eat or drink. 

I hate this. 

[Madmax 5]

Mate,

going through the twitches myself. I totally get what you are saying. We got this. It will be okay..

[Worriedfornothing 8]

I have been in the disease conviction phase of health anxiety before and you are exhibiting tell tale signs of that  and not ALS. I recall sitting in bed envisioning a horrible future (I won’t share the details of these thoughts). You are experiencing intrusive thoughts that trick your brain out of logical processing. Your anxiety is also lying to you about your symptoms.

Hyperreflexia:

You cannot reliably test your own reflexes especially if you are aware of the positive or negative corresponding reaction. Your subconscious can trigger  a slight movement that fools you into thinking it is clonus, babinski, etc. It isn’t real. It is a lie.

Weakness Onset:

You are describing weakness and atrophy in both your leg and hand. Onset ALS wouldn’t present in both at the same time. It picks one and paralyzes one muscle group at a time from that location. 

You also say your legs “feel” like giving out. ALS is about failing not feeling. ALS patients feel completely normal but simply cannot move their foot (or close their hand). It is unmistakable clinical weakness and they know something is seriously wrong.

We also all drop things from time to time. This is absolutely nothing to be concerned with. Before HA, we blissfully dropped items all the time and never thought twice about it. Our hyper awareness of mundane tasks convinces us that the car keys We just dropped or our the slight struggle with a tough button is early onset ALS. This is again is a lie. If you had ALS as you state then you would absolutely be unable to pick items up or hold items with the affected hand. You wouldn’t occasionally drop items you would be completely unable to pick them up in the first place.

Atrophy:

There can be no atrophy without clinical weakness in ALS. Since you do not have that then you cannot have atrophy caused by ALS. You would know something is seriously wrong before noticing atrophy. 

I really empathize with you and know how fast anxiety can derail your life.You are going to be okay and live for a long time. You experienced a trigger somewhere that led to a HA flare up. I know how dark it can feel, but just try to see the light at the end of the tunnel. I would suggest trying to see your PCP if you can. A simple neuro exam can be performed by your PCP and they can really give you some reassurance. Jumping straight to a neurologist can give the HA power by even entertaining the possibility of what you fear.

More importantly , I would suggest some CBT. This therapy can help to change the mental pathways to the worst case scenario that we HA sufferers lend ourselves towards. I am in that process of recovery now. 

Hang in there. 

 

[DoxieMoxie 316]

On 3/9/2019 at 4:43 PM, Worriedfornothing said:

I have been in the disease conviction phase of health anxiety before and you are exhibiting tell tale signs of that  and not ALS. I recall sitting in bed envisioning a horrible future (I won’t share the details of these thoughts). You are experiencing intrusive thoughts that trick your brain out of logical processing. Your anxiety is also lying to you about your symptoms.

Hyperreflexia:

You cannot reliably test your own reflexes especially if you are aware of the positive or negative corresponding reaction. Your subconscious can trigger  a slight movement that fools you into thinking it is clonus, babinski, etc. It isn’t real. It is a lie.

Weakness Onset:

You are describing weakness and atrophy in both your leg and hand. Onset ALS wouldn’t present in both at the same time. It picks one and paralyzes one muscle group at a time from that location. 

You also say your legs “feel” like giving out. ALS is about failing not feeling. ALS patients feel completely normal but simply cannot move their foot (or close their hand). It is unmistakable clinical weakness and they know something is seriously wrong.

We also all drop things from time to time. This is absolutely nothing to be concerned with. Before HA, we blissfully dropped items all the time and never thought twice about it. Our hyper awareness of mundane tasks convinces us that the car keys We just dropped or our the slight struggle with a tough button is early onset ALS. This is again is a lie. If you had ALS as you state then you would absolutely be unable to pick items up or hold items with the affected hand. You wouldn’t occasionally drop items you would be completely unable to pick them up in the first place.

Atrophy:

There can be no atrophy without clinical weakness in ALS. Since you do not have that then you cannot have atrophy caused by ALS. You would know something is seriously wrong before noticing atrophy. 

I really empathize with you and know how fast anxiety can derail your life.You are going to be okay and live for a long time. You experienced a trigger somewhere that led to a HA flare up. I know how dark it can feel, but just try to see the light at the end of the tunnel. I would suggest trying to see your PCP if you can. A simple neuro exam can be performed by your PCP and they can really give you some reassurance. Jumping straight to a neurologist can give the HA power by even entertaining the possibility of what you fear.

More importantly , I would suggest some CBT. This therapy can help to change the mental pathways to the worst case scenario that we HA sufferers lend ourselves towards. I am in that process of recovery now. 

Hang in there. 

 

Excellent post.  Couldn't have said it better myself. 

[anxietyprince 4]

1 hour ago, DoxieMoxie said:

Excellent post.  Couldn't have said it better myself. 

Hello, I have also had twitches & weakness/tingling/buzzing in my left hand/arm for 3 weeks - after having a ALS meltdown for 2-3 days the twitching has moved to my foot, legs, shoulders, ect. This is an anxiety twitch correct? My left foot has just started the same tingling/buzzing and twitching. 

Can anyone confirm (obviously not 100%) that this couldn’t be ALS, Parkinson’s, or some MND? I am 21 & scared. But my mother has anxiety & I believe I may even have it worse. Any help would so appreciated

[Bobnnat 496]

Practically impossible (like 1 in a million) at your age for any of that. Also, read what Worried posted. Twitching, buzzing etc is not a symptom of those diseases (until possibly muscle death which you don't have). You would literally made the New England Journal of Medicine if you had that at your age.

[anxietyprince 4]

1 hour ago, Bobnnat said:

Practically impossible (like 1 in a million) at your age for any of that. Also, read what Worried posted. Twitching, buzzing etc is not a symptom of those diseases (until possibly muscle death which you don't have). You would literally made the New England Journal of Medicine if you had that at your age.

Yeah that is what I have been seeing not ALS - just scared of Parkinson’s now - are they similar symptoms? Just curious if all my symptoms can come about from anxiety & not something else.