Als MND panic- please help me!

[niknakx]

Jojo this is wonderful news! I am so very happy for you! Thank you as well for asking so many well thought out questions and posting your answers here, you’re amazing! I hope you can put all this behind you and go on with a long and happy life! Much love ❤️

[jojo2316]

Jojo this is wonderful news! I am so very happy for you! Thank you as well for asking so many well thought out questions and posting your answers here, you’re amazing! I hope you can put all this behind you and go on with a long and happy life! Much love ❤️

No - sorry that’s not my post! I found it on a BFS forum and I copied it here….. because I liked it! But this person’s neurologist did say very similar things to the one I saw two years ago. It makes me happy to see they are reading from the same song sheet! Hope you are ok? I’ve been a twitching anxious MESS recently!!

[kyllikki]

JoJo sending huge hugs. One day at a time.

[jojo2316]

Here I am again with an update for my silly little blog. I’m not looking for reassurance- I know the score- and I’ve been in this hole too long to deserve it. It’s just I find it good therapy to keep a record when I hit a bad patch (and I do have periods of being ok, I promise!)
Anyway. Here goes. I’ve been twitching for years, (and worrying about als for years!!), but recently I’ve had a twitching hot spot just below my elbow on my left arm. This caused me to examine myself for atrophy and I discovered my left arm is about half an inch smaller below the elbow. This caused an immediate spiral and a flurry of strength testing. And low and behold my left wrist is much weaker. Yesterday I could’nt hold it straight for longer than 16 seconds holding a 6kg weight. This morning I can’t hold it straight with a 6kg weight AT ALL (which is presumably because I’ve been brutalising my poor body again). My grip strength has also fallen off a cliff. Yet again, I’m crying down this damned stupid hole.
Silly me xxxx

[kyllikki]

FWIW, I don't think I could have ever held a 6kg weight at the end of an extended wrist, ever. I do have very tiny wrists, though (all those online 'frame size' calculators estimate I'm about 12 years old ) And! I too get the elbow hotspots (above, not below, but same idea.) Last, you know this, but want to say it for the peanut gallery: Clinical weakness isn't the same as normal old muscle fatigue! Clinical weakness is more like staring at a muscle that just won't move, or tripping on toes that fold under you or a forefoot that won't lift, or having stuff fall right out of your hand. You held that weight. That alone practically eliminates what you're worried over! Sending much love.

[pulisa]

Is there any way you can stop yourself from self-testing mode? Any way you can hold back from that very first attempt to justify your fears? How do you know what self-test you need to do?

[jojo2316]

Thank you so much for the replies, both.
I know that self-testing is nearly always a silly thing to do. I am a drug addict giving in to another hit.
My left arm seems to be stronger now (due to relentless strength testing) . But the real problem- anxiety - sadly remains.
xxx

[pulisa]

You have always been incredibly honest about your HA, jojo. You never make excuses for what you put yourself through. Why do we need to punish ourselves? I suppose if we knew we could work on it.
Maybe it's just something we need to do? xx

[jojo2316]

I think “honesty” is a decoy in some senses. I can use my “insight” to fool doctors and psychologists and family into thinking I have a better handle on things than I do. When in fact I am actually an out and out nut job!!
xxx

[pulisa]

I think “honesty” is a decoy in some senses. I can use my “insight” to fool doctors and psychologists and family into thinking I have a better handle on things than I do. When in fact I am actually an out and out nut job!!
xxx

Yes... I think "insight" is much welcomed by docs because it lets them off the hook.

I've never heard of a nut job with insight!You're just very thorough with your health issues! xxx