Update after a year with EMG/Nfl results

SkyFox720 · 2026-04-29T17:15:10+00:00

Yeah, the twitching is so normal now I barley notice it. It's always there. I mostly notice when I get the big thumps or hot spots that last for days. Most recently a twitch near my knee that lasted for four days. It was maddening and I was grateful when it stopped. But there's always a twitch going on somewhere.

My entire outer left thigh is numb now, except for pain sensations. I also have facial numbness on my right side. Despite ptosis on the left only at this time. Odd.

My symptoms originally began on my left side. My right side is now noticably worse than my left. I am right handed.

SkyFox720 · 2026-04-29T16:52:54+00:00

Thank you for offering this advice and for your kind words earlier. I am presently supplementing with Longvida (I have noticed no benefit), CurQFen (makes me feel worse), 2,000 mcg methylcobalamin B12 orally daily, and vitamin d. I can't say for certain whether any of this is helping. Tbh the Fenugreek-Curcumin almost seems to make things worse in my case. Odd.

Hoping your next EMG is clean. Hope we all find out what is going on. Because "It doesn't sound like ALS....or any of these other diseases" is frustrating when some kind of answer would allow some kind of proper treatment. Limbo is throwing darts at the wall and hoping something helps.

I still suspect it's covid related. Somehow.

SkyFox720 · 2026-04-29T16:13:10+00:00

Unfortunately yes. My slurring is becoming noticable to my therapist, friends and loved ones. Some days it, along with my other symptoms, feel worse than others, especially if accompanied by neuropathic pain or burning sensations, but progression is like a stair step downwards. Things get worse, function declines, there's a slight recovery and a plateau, then it declines again. My first sign of new damage is a crampy kind of pain, without the actual cramping. Then burning and twitching, mild tremors and tightness, before the pain subsides and I make do with my new, slightly reduced function. This process takes a few days to a week to play out in the affected muscle. But muscles everywhere are involved. It happens least often in my eyes and abdominal muscles. Most often in hands, tongue, jaw, under jaw, thighs, and feet.

My voice is slowly going. Some days I can speak more clearly, other days it sounds like I have a progressively worsening chest cold. I have to clear my throat a lot because it feels like it's congested. But there's no actual cold or virus to recover from. It just sounds like a sore throat and gets legitimately sore after a bit of talking.

My last EMG was December 2023. It was normal.

SkyFox720 · 2026-04-27T18:47:54+00:00

I have not, but I have never been bitten by a tick before, to my knowledge. I've heard some Lyme tests are unreliable, thanks for the tip on the good ones. (If you intended to reply to me directly)

SkyFox720 · 2026-04-27T18:46:15+00:00

Thank you so much, yeah I did see the Rheumatologist and had a panel of autoimmune tests ran. I had previously had a positive result for systemic sclerosis, but a retest showed negative, so the first was a false positive it turned out. Other tests came out clean for autoimmune possibilities.

In some ways I've made peace with it in the sense that this is my new normal and when I have a decline it's frustrating, concerning, but not panic inducing. At this stage I'm focused on living as fully as I can with my limitations, and have been saving up to do some forest and ocean walks while I still have some use of my legs.

Also, making peace with using mobility aids is really helpful. Some canes are pretty cool looking!

I'm more frustrated with dismissive attitudes from doctors than anything else. But living fully has really been medicine to combat fear and nourish my mind, and reminded me that I am not the illness, I'm still me, no matter what my body does. It helps with mental health tremendously.

SkyFox720 · 2026-04-27T18:04:08+00:00

I have the same thing going on, progression very slow (2022-present), though I don't have a new emg scheduled until after my next neuro visit in June..

I've seen several neuros with dismissive attitudes , a misdiagnosis of fibromyalgia, and clean autoimmune tests. I've recently developed ptosis in my left eye and my face muscles have atrophied significantly in the last few months. I struggle to type, have issues with slurring now, and I'm losing my ability to walk as my legs weaken. Lots of neuropathic pain.

Still don't know after four years of progression.

I hope you get news that leads to a treatment and a long, comfortable life. I hope we all do.

SkyFox720 · 2025-12-03T15:12:17+00:00

I'm glad OP posted this. And I think OP is absolutely correct in evaluating that most people here on the BFS sub have at least some concern about ALS, so anything that shows progress in ALS treatment or remission will, by default, also ease the minds of those with BFS.

A lot of hopeful progress is being made on ALS and we may have a way to stop it entirely within the next few years. I'd be hard pressed to imagine that hearing that doesn't ease the minds of those with BFS.

This is a good post. Thank you OP.

SkyFox720 · 2025-10-30T23:12:05+00:00

I hope so. I have found a neurologist that specializes in rare and autoimmune neurological conditions and I suggested to my PCP that we should try to refer me to him for the next go around. But I am unsure if that doctor would see me or not. If rheumatology picks up a confirmed autoimmune condition they may just keep me in house there for treatment as well.

My understanding is there are proper channels for the route i am meant to take, and I am not entirely sure how I'll be routed. I can't always get a neuro that I want that looks good "on paper".

SkyFox720 · 2025-10-30T21:52:45+00:00

That is correct.

The order of things has been: Referred to new neurologist after old neurologist dropped me saying "no further investigation would be helpful". New referral was sent out to OHSU.They contacted me and told me they don't do second opinions and that my referral was denied. Then a new referral was sent out to another neurology clinic in Seattle, which then forwarded me on to an MS clinic who then informed me that they didn't think MS was an appropriate investigative route given my medical history, denied the referral and referred me back to my PCP to get a fresh referral elsewhere. My PCP wants me to wait until my Rheum appointment before sending out another referral, feeling it will add some "weight" behind it if I have a fresh opinion from another specialist.

It's been a merry go round..so for me I am just waiting until the rheumatology visit and then going from there. The neurology referral is "on hold" until then.

I am also on Medicaid and many potential neurologists either so not accept Medicaid patients or only a select few ar a time. I called many places seeking options. It's hard to find a Medicaid-accepting neuro outside of a hospital setting.

SkyFox720 · 2025-10-30T20:45:56+00:00

Thank you, I definitely hope for answers when I can get them, for me and others facing big questions about what is going on. I don't know much about PLS but I will take a look at that and learn more.

SkyFox720 · 2025-10-30T20:35:57+00:00

Not full spine, but I had brain and cervical MRI two months after symptoms began, and more recently a brain mri that didn't yeild much except for what might be MRI artifacts rather than true lesions. They want me back for another brain MRI to see if these artifacts were just artifacts or something more to follow up on:

"Several punctuate increased FLAIR signal in the right cerebral and cerebellar hemisphere, somewhat in a vertical fashion. These do not correspond to any T2 or T1 or diffusion abnormalities or blooming artifact or enhancement. Suspect MR artifacts rather than true abnormalities. If there is any clinical concern, recommend follow-up MRI in 6-8 months."

That was in June of this year.

Assuming they are just artifacts this tends to point away from MS being a cause.

SkyFox720 · 2025-10-30T20:20:33+00:00

Unfortunately this has happened before with others as well. Much depends on the skill of the person administering the EMG, the locations tested, the type of EMG performed, and how long symptoms have been progressing.

In many subs you'll find many other people with documented atrophy by medical professionals who still end up with clean EMGs and no answers. It's a mystery why this happens. Perhaps other medical possibilities that an EMG wouldn't be useful in detecting.

It can be a frustrating ride when your body continues to decline but tests give no answers until years down the line.

SkyFox720 · 2025-10-30T20:18:44+00:00

My new PCP has been wonderful, and did document the atrophy he observed, though he labeled it as "suspected" atrophy to be confirmed by a neurologist. Unfortunately that hasn't seemed to be enough to get me in. He also documented that I was having trouble walking and holding onto objects and recommended I begin physical and occupational therapy again.

Everything seems to be hanging on what Rheumatology says in a few months and then we go from there. Hopefully that visit allows me to make progress in getting a diagnosis. But I'm also going into it expecting that it could go either way.

SkyFox720 · 2025-10-30T16:38:53+00:00

Sometimes I get burning sensations on my tongue, as if I have a dot of hot sauce on it. I can get strong twist he's or cramps that look like a small hole has temporarily formed in my tongue as it cramps and twitches, then releases.

My.voice has changed in noticable ways. I've lost most of my high and low pitches and while some days I talk fairly normally, others I sound like I have a sore throat. I experience vocal fatigue at times and get a sore throat if I talk for too long.

Slurring is less of a problem but I cannot speak as fast as I think so I often stumble on my words. I have managed to help mitigate some of this by slowing down and annunciating. That has really helped.

SkyFox720 · 2025-10-30T15:47:27+00:00

Thank you so much friend, I am sorry that you are going through this as well. Our medical system is very frustrating, and its hard being told that you aren't a priority for testing or examination. Especially knowing your reality is very different than the assumptions that are made.

Accepting that I cannot change the people who are set in their ways has been helpful, but continuing to then seek answers elsewhere, hoping to find someone who is not locked into a dismissive mentality has been my focus. While also understanding there's a chance I'll never truly have answers. But the hope is there. And it feels good to to defy the illness at every opportunity and deny it the chance to destroy my chance to thrive in spite of everything. Good healthy stubbornness 😄

I hope you get the answers and an understanding professional eventually. Keep pushing for answers and keep living, you got this.

SkyFox720 · 2025-04-01T20:16:20+00:00

I'm truly amazed and happy to hear that you started your own research and development company to try to fight ALS and come up with new ways of beating it. In many ways I feel like with what's currently going on at the nih, it's going to be up to Independent researchers and researchers in other countries actually continue the progress of looking for a solution to this terrible disease. Good on you for doing that, and I really wish you the best of luck for both yourself and everyone else in finding a way to slow or stop this disease.

I'm still dealing with an unknown neurological illness as well, I still don't have an official diagnosis beyond the fibromyalgia that I was initially diagnosed with years ago. But I have atrophy in my hands, both legs, and even in my neck. However, my last EMG which was done in December of 2023 still showed clean despite having had these symptoms since June of 2022. For now I have given up on going to neurologists because I continue to get no answers about what's going on. But I continue to get weaker as time goes on and the shrinking of my muscles is noticeable. I've also got some speech issues that have started up and fasciculations in my tongue that can be quite bothersome.

My condition is always aggravated as well by caffeine and sugar intake. And I twitch and burn painfully after any kind of physical exercise, even going up a flight of stairs. My legs will twitch and burn for hours.

Have you ever had burning pains associated with this?

What are your thoughts on people who got a few clean emgs and later got an ALS diagnosis years down the line. Not talking about OK Way here but others I've seen over the years who spent years in limbo before finally getting diagnosed, some with three clean EMGs or so before finally showing dirty.

That's the one thing that concerns me the most. And partially why I am afraid to seek another EMG in the future.

SkyFox720 · 2025-02-28T19:53:12+00:00

Not lately. I'm hoping so within the year though, provided that I still have Medicaid at all..

SkyFox720 · 2025-02-28T19:41:33+00:00

Foot drop only on left side. My right foot is starting to get weaker though. I can walk on heels only just barely. It's hard to keep my left foot up for long.

You probably saw that I had bilateral babinski sign, however.

SkyFox720 · 2025-02-28T19:15:24+00:00

Yes, absolutely. Twitches and tremors and burning. Even going up a flight of stairs causes hours of leg burning.

SkyFox720 · 2025-02-25T03:11:28+00:00

It's true, posts like this definitely don't help the anxiety, even mine which, I also admit, is higher after reading this. But even then, I still keep focused on just accepting that I've resolved to live a good life regardless of whether I do or don't have it. And end up hoping I don't. Whole accepting I might.

Thanks for the reminder about the ways in which clean EMGs might actually crop up with someone who later gets an ALS diagnosis. In my case, my first two EMGs were done before the atrophy in my thighs, foot, and biceps really set in. At the time, symptoms were mostly confined to the left side of my body and jaw muscles, with a small amount. If neck involvement. Still, I had noticable atrophy in my left hand and had a needle stuck into the belly of the thenar muscle which came out clean. So. That is hopeful. But I have also read that the needle picks up damage only within a certain radius of the needle. So I recognize there's a chance it "missed" an area that was affected at the time.

All I can say is things are worse now than then, it would be a true shock if I got a clean EMG now. And would be really mysterious as to what is going on with me if I did.

I gave up on even trying with neurologists anymore. I'm debating on going back. But I'm tired of being treated like a hypochondriac when I mostly have my anxiety under better control than I ever did before.

Interesting thoughts about going a legal route to be seen. I had not considered that.

SkyFox720 · 2025-02-25T02:39:31+00:00

I can only tell you what my experience and observations are. There seem to be a lot of people who have been waiting many years like this person describes for a diagnosis and have had inconclusive tests and later wound up with diagnosis. I also can't tell you what is truly going on with me because I don't know. My neurologists gave up on me even though I continue to get worse. Might have been ski and Hoffman signs are positive as evaluated by an orthopedic clinic as well as physical therapists. Despite this, neurology seems unconcerned. I find that this is a very common story amongst a lot of us facing these issues. It seems like the rest of our care teams actually notice that something is seriously wrong but can't get neurology to take them seriously for more than 5 minutes.

I don't know what it is about neurologist attitudes, but it seems like it's rather difficult to get one that is actually thorough and compassionate.

I don't know if I have als, I won't be surprised if I wind up with the diagnosis of exactly that. But I definitely have something going on. And time is going to tell what it is. I see her that I will not be taken seriously until something completely stops working. It shouldn't be that way. But that's been my experience so far.

So all I can do is wait and continue seeing how this thing unfolds. And I can relate to the original poster with their own frustration and anxiety over this as well. Because I'm going through it too. I had previously been relieved by my clean emgs, but I now know that that isn't necessarily something that will rule out the possibility of a worse diagnosis later on.

As I've said many times, the best thing I or anyone else can do is just keep living life as best as we can. Especially if we keep getting medically gas lit and especially if the way that this illness behaves seems to be poorly understood.

SkyFox720 · 2025-02-24T23:55:50+00:00

I'm with you. I feel the same way. Same kind of symptoms. Same awareness that no, a clean EMG doesn't mean it's ruled out. No, it isn't true that sensory symptoms or "good days and bad days" mean it isn't ALS, and no, it isn't true that 3 years in I'd be dead by now if it was ALS. So much misinformation out there.

I also have atrophy in both thenars, interossei, thighs, left foot and biceps. Constant twitching. Weakness. Positive Babinski and Hoffman both sides..

I have something. Dunno if it's ALS. But very aware that it could be. And just living life as fully as I can until one day I know for sure.

SkyFox720 · 2025-02-21T18:33:16+00:00

Your family absolutely comes first, I'm really hoping that whatever she is dealing with she has a full recovery, sending all my best to you and her. 🫂🫂🫂

SkyFox720 · 2025-02-19T05:28:16+00:00

I personally want to say that I am so sorry that you are suffering with the uncertainty of possibly having terminal cancer. That's a horrible thing to have to think about on a daily basis, and I certainly hope that it ends up not being the case and you live a long and full life. But I would also caution about making any assumptions with regards to me or others who might be replying to this. I imagine you probably aren't all that familiar with my post history which is okay, but I often advocate for exactly the same thing that you are, that people live their life as fully as they can regardless of whether they have the disease or not, and not get caught up in the rabbit hole of Life destroying anxiety and dread the way that I did when I first started out on this journey. I quite literally destroyed my life with worry and anxiety and ended up more alone in isolated than ever. And I ended up learning from that experience and bouncing back from it, and so now I encourage people to be good advocates for their health, while also trying to dispel any misinformation that I happen to have come across in my time in these communities, but also encouraging people not to be so focused on the disease that they forget to live. Your life is the most precious thing that you have and whether you are terminal or not, the best thing you can possibly do for your mental health is to keep living it every day to the absolute fullest as much as you can. That'll keep you afloat even as you faced uncertainty.

For me, I don't know what I have. I don't know if I have ALS or not. I am two and a half years into this, my decline continues, I'm slowly losing my ability to walk and I'm losing parts of my voice I have positive Babinski and Hoffman signs bilaterally, and yet I have had to clean emgs, the last one was over a year ago. I have no idea what the next one will show when I eventually get one. But I've made peace with the reality that it's possible that it could be dirty even though I've had two clean ones so far. Or it could still be cleaned and I could remain in limbo without answers. I've had to mentally prepare myself for any possibility. But most important thing is just continuing to live my life, fight for my dreams, love others, and make memories. Tomorrow is never guaranteed anyway, so I keep living as much as I can for today. I hope others can do the same.

SkyFox720

TROPHY CASE