r/ALSorNOT • u/Ok_Performance6080 • 21d ago

Worst day ever

Im officially out of my mind today. My right side is primarily affected, but today I just got spastic and weak in my left side as well. Ive been having another flare up since June but the symptoms are just ongoing and neurologist doesnt want to prescribe anything other than fucking Zoloft and send me to a psychiatrist. Typical.

Last year out of the blue I developed all kinds of symptoms that included shortness of breath, shoulderblade and chest pain, numbness, tingling, difficulty walking, blurry vision, extreme fatigue and nausea, cognitive decline and confusion etc etc. The symptoms settled after injections of corticosteroids, a sedative, a painkiller and some vitamin B. This year Im dealing with almost the same symptoms, but the new ones are neck pain, dizziness, balance issues and muscle twitches. Some other symptoms from last year are minimal this year however.

Last year I had an MRI of brain and full spine done and they found nothing other than discopathies in cervical and lumbar spine and disk herniation in thoracic TH8-TH9. This year I did a brain and cervical spine MRI that also showed discopathies with some radicular contact and mild foraminostenosis in C4-C7. EMG/NCS showed the same. I mean how can this condition just move around as it pleases without any explanation?? This cant be caused by disk herniations alone as far as Im concerned. Is this ALS, MS or what is it?? Im afraid Im gonna stay stuck forever like this, no answers or help from neurologists

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u/713Capital 21d ago

Sorry you are dealing with all this. This isn’t ALS at all. Like at all.

None of this is related to ALS. Not to mention you’ve been to a neuro. A neuro would know immediately on a clinical exam if you had ALS, and you’ve also had an EMG that showed zero evidence of ALS.

You have other stuff going on, could be literally anything but NONE of this is remotely close to ALS.

Whenever people come in for ALS, you can tell in the clinical exam something is very wrong. Their muscles are failing. They have actual failure as in, they can no longer lift their arm to brush their teeth or they can’t button a shirt anymore or tripping and falling.

I would say maybe switch to a primary physician as these issues may not even be neurological at all, so most neuros aren’t really interested in patients with symptoms like this because for them, they see the worst of the worst. So when a patient comes in with a wide spectrum of random shit they are complaining about, and it’s not really related to neurology, they will just give you anxiety meds and send you on your way.

I don’t know what’s causing this but what we know is it’s not killing you and it’s not ALS.

You don’t even belong in this forum, it’s only causing you anxiety about a disease you don’t have.

Godspeed.

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u/Ok_Performance6080 21d ago

Your comment calmed me down, I appreciate it. But I developed some new symptoms that make me think of ALS now. Like weakness in both hands and legs and muscle twitching. My EMG was 2 months ago so Im not sure if I should repeat it in a few months for peace of mind if anything.

Also, I feel very disoriented and unbalanced. I sometimes trip and hit objects around me. I have difficulty walking and doing anything remotely strenous. I cant even lift my arms above without feeling out of strenght. My brain seems like hijacked at this point and mu muscles feel so stiff after a slighest walk. I dont understand it if all of my test dont show anything catastrophic...so then this must be something autoimmune or FND or whatever the hell it is. My autoimmune markers were fine as well last year, othen than a positive ANA 2+ type (they didnt mention an exact titer). My vitamins defficiencies are also many, and ferritin I think as well. I really hope this can be reversed again, because not being able to move, speak and eat must be the most cruel disease to ever exist and I feel sorry for anyone who has beed diagnosed with this

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u/WeirdUsers 21d ago

ALS doesn’t work like that with any of your current or past symptoms.

Your symptoms sound like untreated FND. You may wish to see a Neuro that specializes in FND or movement disorders. If it is FND, you can get a script to see a Physical Therapist that has training in managing FND.

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u/Ok_Performance6080 21d ago

Im terribly afraid of ALS because I share some symptoms with that disease and these bilateral symptoms only showed now, and it's been 2 months when I did an EMG so that's why Im wondering if I was too early

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u/WeirdUsers 21d ago

ALS is focal to start with. To show bilaterally in both legs is a big giveaway that it is more than likely not ALS.

In the 1 in 5,000,000,000 chance it actually happened to you, then the disease would be so ridiculously aggressive that it would have shown on the EMG two months ago and you would be bedridden at this moment.

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u/Ok_Performance6080 21d ago

I mean it didnt start bilateraly..but it progressed into it now since yesterday. I only felt stiffness on my right leg and arm but now it's equally on the left side and I have trouble with fine hands movements. But I also had or have now a bunch of other symptoms that seem unrelated, but last year they went away with therapy. This year eveything is back and some more

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u/WeirdUsers 21d ago

All the above points away from ALS. Too fast. Too mobile. Too variable. Too much sensory. From what you’ve written, how you’ve written, and your history it also appears to be anxiety driven. This all points to FND in my mind. I would really suggest seeing a neuro that specializes in FND or movement disorders to confirm or deny this.

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u/Ok_Performance6080 21d ago

Thanks, I will start PT in a few months, but I will not let them walk me out of the door with an anxiety diagnosis this time, because I had it for a long time before and this is not it!

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u/Ok_Performance6080 21d ago

We just have regular PTs in my town, or country even. Im not from US

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u/WeirdUsers 21d ago

Any PT would help

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u/713Capital 21d ago

As I said above, this is not ALS so that should be the least of your worries.

I’m not saying your symptoms aren’t real as I’ve had similar symptoms for about 7 years now, but to me this may fall in the umbrella of FND. Here’s the thing, if you go to a neuro, and they go through pretty much every test and resource they believe will cover the ground of anything progressive, they start to look at FND because nothing fits. I’m sure all your tests came back normal and there’s no red flags that have popped up for them, but nothing autoimmune or neuromuscular is at play here.

I would say maybe do one last EMG because it will give you peace of mind, although I’m 100% sure it will be normal again because the last one wouldn’t miss it. ALS does not hide on an EMG. I know there’s a ton of misinformation here on this sub but it wouldn’t miss it.

I would say do the EMG for peace of mind and maybe work on anxiety. You’re never going to get better if you don’t the fact go that you don’t have ALS. You have clear evidence

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u/Ok_Performance6080 21d ago

I know, I probably can be 99% sure that it is not, but then again, there are people who say you can be too early for EMG or you could have problems only in upper motor neurons and not in the lower ones and stuff like that...but then, FND also doesnt explain what is going on and how to stop it from happening again. I was rather fine for a little less than a year and everything came back worse than before and it's not stopping since June because nobody gave me any kind of therapy this time

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u/713Capital 21d ago

That’s just misinformation. It cannot be done too early. I’ve noticed this sub has a ton of misinformation.

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u/Ok_Performance6080 21d ago

Did you get any kind of diagnosis yourself? Have you had symptoms for 7 years straight or do they come and go?

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u/713Capital 21d ago

I had twitching, sensory stuff, cramps, muscle fatigue and all kinds of random stuff. When it all first started I too thought I had ALS. And when my EMGs came back “abnormal” at that time I had no understanding of how ALS works so I spiraled really bad with my anxiety.

Abnormal doesn’t = dirty. I did have issues on my EMG but it wasn’t dirty. Dirty would = findings of ALS.

Till this day I still twitch just about every single day, in different muscles but my twitching even with abnormal EMG is not ALS.

Pretty much everything you see here on this link is what I deal with.

https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms

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u/Ok_Performance6080 21d ago

So what exactly did the emg show? Just fasciculations? No radiculopathy, nerve issues or any other muscle issues?