1.5 years of ALS fear/symptoms

[lcdm27]

Just wanted to share some of my experience with everyone and hopefully get some reassurance...

In July of 2017 I started experiencing strange neurological symptoms. Primarily this was a slight numbness on the right side of my face coupled with a general weak feeling in my right arm and leg. Was terrified this could be a tumor, so I went to a neuro and had two clean MRIs afterwards (head and c-spine). The facial sensations then subsided, but I subsequently started twitching all over. This is when I made the horrible mistake of googling twitching, which caused ALS to pop up on my radar.

I saw the same neuro again about this and he wasn't convinced I had ALS, but suggested that I get a second opinion at Mayo for my own peace of mind. I saw the Mayo neurologist in November 2017 (three months after symptom onset). After a clean exam (though I did have symmetric hyper reflexes) he said that he's in absolutely no way concerned about ALS and that this really is just anxiety. This did help me substantially, but my symptoms have not gone away. In fact they've progressed...

Since then, I've had a constant weak feeling in my right leg that I especially feel when walking---regardless of my anxiety levels. In the past couple of months my right hand has also felt constantly weak. My handwriting is even deteriorating. Not sure that qualifies as perceived weakness anymore. Lastly, I've noticed that all the muscle in my right leg is unquestionably smaller than the left. I can even feel that my pants fit more loosely on the right leg.

I've absolutely fallen back in this rabbit hole of constant intense health anxiety. Has anyone here had similar experiences? I know BFS is super common and I've read many BFS stories, but my symptoms don't seem to match too well (especially the handwriting and atrophy issues I'm having).

Thanks.

[Fishmanpa]

This (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!&p=1658811#post1658811) is all the reassurance you need.

Positive thoughts

[lcdm27]

This (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!&p=1658811#post1658811) is all the reassurance you need.

Positive thoughts

Thanks for responding. I've indeed read this before, but I'm not sure it fully addresses my experience. I'm especially worried about my handwriting and the muscle wasting in my right leg and right hand. Unfortunately, none of these are addressed in that thread.

[BlueIris]

I doubt this will help, but nobody's body is perfectly symmetrical. Chances are you've always had one leg more muscular than the other, and it's the anxiety making you notice it.

[jojo2316]

I very much understand your anxiety- but I do feel all the reassurance you need is in the title of your own post. Your symptoms have been going on far too long to fit with ALS. But it is a horrid, deep, scary rabbit hole.... and it is VERY easy to notice differences in symmetry when you are in it. My right leg is MUCH bigger than my left.

[lcdm27]

Thanks all for the responses. Your words are appreciated. I saw my neurologist for the first time since the beginning of my symptoms. I updated him on all of this and he was really not concerned at all, though he did not do a clinical exam.

This is all very frustrating because in class today my handwriting was perhaps the worst it's ever been. But after going home and writing freely in my notebook by myself (same pen and everything), it looked vastly better than it did in class just a few hours prior. Not sure what to make of these fluctuations.

[KrankerMann]

The fluctuations 100% disprove ALS. ALS absolutely does not come and go. I think it's most likely that you are hyper focusing on events and drawing conclusions that probably aren't true.

[Carys]

When I was a teenager and in the grips of the HA total belief that I had a brain tumour (by the way, I'm over the age of 50 now), I convinced myself to such an extent that I stopped being able to walk. I had no movement in my left side - it was dead and I couldn't move it for a couple of days. I stopped being able to speak properly, and was slurring badly. These 'symptoms' were actually happening, they weren't in my mind.....but the power of the brain is extraordinary. It is the most complicated 'unit' that we know of in the universe. So, you CAN make your writing worse by being certain of having a condition like ALS. (by the way, obviously no brain tumour, everything working just fine since then lol)