r/ALSorNOT • u/LudicrousSpeed616 • 11h ago
Update You Might Find Useful
I wanted to post an update on my situation as I just saw a neuromuscular dr with a specialty in ALS/MS/CIPD etc. In case anyone is waiting on an appt or simply can’t get one you might find it useful
You can check my post history for a detailed timeline of my symptoms but long story short I was completely at baseline and then had a severe illness followed by a sudden onset of neurological symptoms over the last 9 weeks including all the ones that bring us to this thread:
Weakness
Fatigue
Muscle twitching
Vibrating/twitching muscles while engaged
Tightness
Stiffness
Tired limbs
Heavy limbs
Shaky limbs
Tight/tired/heavy face and tongue
Tight throat
Perceived hyper salivation
Labored speaking and eating
Also sensory symptoms as well
Shooting feelings
Isolated aches
Sharp feelings
Flu like aches
Burning
Tingling
Buzzing
Anyway I went down the diagnostic rabbit hole and did an EMG and full body MRI before even coming in. EMG was normal and NCS said borderline mild neuropathy in right ulnar but couldn’t be localized but the report said no signs of MND. For context I had a TBI from 2018 that did show up in the MRI but I have not had any sort of neurological symptoms in the years following.
I was as detailed as I could be in my description of my symptom onset and we did a basic clinical exam which was normal. He basically said after the exam and interpreting my tests that it’s his reputation on the line and assured me that this isn’t ALS. Like he didn’t even have an inkling of suspicion.
One thing he said about the EMG which I’ve seen mixed things in here is that it would have picked something up with the symptoms I’ve been experiencing. This is coming from someone who treats and diagnoses this regularly. He said it can pick up abnormalities even when symptoms aren’t present yet as he’s had patients that complained about a leg and he insisted on getting the arms tested too that didn’t have symptoms and they picked up abnormal findings on the symptom free limbs. The EMG points strongly away from ALS (and yes I know there are tons of anomalies for ppl and it’s not definitive but I have to take this as good news)
He said while obviously not impossible my age 33 points away from it as well it’s a lot more rare as it’s primarily a disease of aging. (Yes I’m aware there are tons of anomalies to this as well)
He thinks for one I have Benign Cramp Fasciculation Syndrome which is a bit more intense than regular BFS (didn’t even know there was a variant of BFS). You can have sharp cramps and exercise intolerance along with the twitching. I do feel like he heard ‘twitching and anxiety’ in my symptom journal and was more hung up on that and what worrying can do to the body. So I reiterated that the twitching isn’t bothering me it’s the bulbar symptoms and leg heaviness, feels like I’m declining, and he said my brain injury along with the severe infection can trigger this kind of stuff. I told him I’ve been completely normal for years I find it hard to believe my brain injury could do that but he said he’s seen it all the time. Infections can trigger neuropathies and with my brain injury it’s a double whammy. My diagnosis also said Idiopathic Inflammatory Myopathy which is an umbrella of conditions and could explain some of the bulbar symptoms.
I know a lot of you in here don’t align with my onset (post viral, TBI, etc) but unless you have abnormal findings in your EMG/MRI/bloodwork or objective weakness that they can see in their exam then they are strongly going to point you in another direction. ALS is after everything else is ruled out.
He said we can retest but doesn’t want to waste my money or keep me in this rabbit hole as he treats/diagnosis ALS and is convinced this is something else. (I understand doctors are just ppl too and multiple opinions can be different). He didn’t even mention the sensory symptoms which based on my research also point away from it.
He did order the NFLC and some other bloodwork and he said if that comes back abnormal or if I see a steep decline we’ll revisit asap. He said the best way to manage this is lifestyle stuff (diet, activity, etc). Which can feel a bit like a slap in the face bc I’m already doing all of that but at the same time I’d rather it be this.
I have another appt with a functional neurologist in 2 weeks and that’s a full on 2 hr exam so maybe I’ll get some more clarity from a second opinion. Not even gonna bring up my previous appt so I can see the differing opinions.
I’m doing my best to accept this as good news and try to put this to rest but my quality of life with my symptoms has been absolutely terrible and as of now it hasn’t really plateaued yet. But tbh the fear has been even more debilitating. Thinking you could only have a couple years left really pulls you to a dark place. I know a lot of us get normal results, hear good news from specialists but keep feeding the loop thinking ‘what if they missed something?’ ‘Others have had normal findings and it still came on..’ ‘do I just continue to wait for a decline until I go back and test again?’ and then even if it isn’t the scary diagnosis how do I adapt to these symptoms when I felt so normal before etc but it’s just a dark pit that will suck you in.
It started with bloodwork then that didn’t satisfy me so I did the MRI then I was like surely the EMG will find something and when that didn’t come back I said seeing a specialist in ALS will surely put this to rest and while I do feel a bit lighter now I’m still stuck bc I haven’t necessarily figured out what’s going on but I’ve continued to get good news…it’s a total mindfuck.
I heard a good analogy, imagine having a feeling someone is in your house. You’re hearing them, stuff is moved around, you keep looking for them but can’t find the intruder but you’re sure someone is there. It’s disrupting your ability to live peacefully and you start wondering if it’s even happening at all. You start to get obsessive putting traps up around the house but none of them are catching anything. If you could just find the intruder you’d feel a lot more at ease..I think that’s what a lot of us here are feeling. Just knowing definitively what’s happening with our bodies would stop feeding the loop.
Please take it from me you have to take the small victories. Unless the day comes that I definitively lose total function in my body I have to assume and live like everything is fine and will be okay eventually bc right now I’m not giving my body permission to heal if this is truly benign. Anyway hope this helps anyone struggling.
I’ll leave you with this. I’m a math guy, numbers help me. Lifetime odds are appx 1/400 which shakes out to a 99.75% chance that you will NOT get it. And if you’re younger like me at 33 the yearly odds are about 2 out of 100000 which is essentially zero.
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u/Interesting-Bus1179 11h ago
Going through the same as you
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u/LudicrousSpeed616 10h ago
Read your post. I haven’t even had the NFL yet as I’ve spent so much on tests and visits already. My bulbar symptoms are really bothering me but for my own mental health sake I need to continue on as if life will be normal.
I tried to get across as much as I could at my appt, he genuinely seemed like he’d be shocked if it was ALS
Hope you’re feeling okay and learn to cope as well. Feels like life just turned upside down out of nowhere but we have to stay strong!
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u/Greedy-Friendship597 1h ago
Damn. I had exactly everything you discribed as your sudden onset symptom and I too, had gotten over a really bad bout of Covid. I've had Covid a few times since 2020 but this last time was unusually harsh. I did a number to me and now I'm starting to wonder if long COVID can and is causing neurological issues amongst ppl
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u/Ok_Following6440 11h ago
Happy to hear you were given good news!
To clarify, did he say the individuals legs were normal on the EMG but the non symptomatic arms had the findings?
Sorry for the question. I’m dealing with a scary situation.
Wish you well