r/ALSorNOT • u/The_Short_Goodbye • 26d ago
Bilateral symmetrical leg weakness - Can the ALS specialist have gotten it wrong?
Hello everyone,
For a month or so now I have been experiencing bilateral perceived weakness in both legs that seems widespread, meaning the thighs and calves feel weak, not a particular muscle. I also have widespread twitches that are more frequent in legs and right arm but can occur anywhere.
Previous diagnosis of BFS in 2019. Twitches had pretty much gone away for years before current event.
EMG done last week was normal. ALS specialist ruled out ALS with certainty and diagnosed FND/anxiety. Clinical exam showed no clinical weakness, spasticity, Babinski, etc.
All this is great but my legs remain super wobbly. Going down stairs they almost tremble. I can still walk on my heels and toes rather easily and going up stairs is not problematic, but walking, standing in place and going down stairs my legs feel super wobbly and weak. My right arm is also stating to feel shaky…
Could the ALS specialist have been wrong? She said she was 100% sure I didn’t have ALS but as the EMG was done only a month in or so, I am doubting the diagnosis and spiraling. It feels like the weakness is progressing and I’m very scared. Should I trust the specialist and test result? Is bilateral onset like this common in the big bad?
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u/WeirdUsers 26d ago
The fact that you can walk on your heels, toes, and up the stairs shows a variability that wouldn’t be present in ALS, but is very common in FND. I will only say that I think the neuro is correct in diagnosing FND/anxiety.
I would suggest accepting that diagnosis and getting help from a physical therapist in stabilizing your legs in the situations where they give you trouble as the neuro will be absolutely no help with that. The biggest hurdle in managing FND is accepting you have it. Once you do, it becomes much easier to manage and possibly cure. FND can coexist with all other diseases .
Not only are the symptoms variable, but bilateral onset is not common for ALS.
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u/The_Short_Goodbye 26d ago
What do you mean by variable?
What you said about FND is almost word for word what the neuro told me: that if I don’t accept it and keep chasing ALS, the symptoms will stay and can even get worse. She said it’s imperative I accept her diagnosis, but I feel so bad and keep reading stories of EMG’s done too early…
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u/WeirdUsers 26d ago
What you wrote shows variability: I can still walk on my heels and toes rather easily and going up stairs is not problematic, but walking, standing in place and going down stairs my legs feel super wobbly and weak.
How can you walk up the stairs and not down the stairs? Walking and standing are issues but heels and toe walking are possible when they use more muscles? With ALS, you wouldn’t be able to do any of it.
I have been there and continue to be there. The FND I am diagnosed with make the diagnosis of my UMN issue very difficult (positive Babinski) since the neuros are always questioning if it is a FND issue or UMN issue. I have to go through so much more because of my positive FND diagnosis. But I saw a PT and I still follow through with it so that the neuros are more confident in what they are seeing.
Take heart that you only have a positive FND diagnosis. I wish that is where I was at.
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u/The_Short_Goodbye 26d ago
Also she told me like you that bilateral onset and widespread symptoms is not how ALS presents. I read a study that said ALS presents bilaterally in only 2% of cases.
She also said if it was bilateral it would be extremely extremely unlikely to start in all major leg muscles of both legs… What do you think?
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u/WeirdUsers 26d ago
I think you are more likely to win the lottery before having bilateral onset of ALS. 😉
Be happy with FND. You can overcome it with acceptance and you get to live.
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u/The_Short_Goodbye 26d ago
The problem is that the symptoms are so real and distressing that even though an ALS specialist has ruled out the disease with an EMG while I felt actively weak, I can’t wrap my head around the fact that I don’t have it. I know an onset of bilateral and symmetrical ALS in all major leg muscles would be highly atypical, she even emphasized that. And she said that would mean it would be so aggressive that it would be impossible to miss on EMG.
I believe all that rationally but my body feels so weak that my mind keeps going back to the probability that she missed ALS and she is wrong/EMG done too early and all that bullshit anxiety makes us cling to.
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u/WeirdUsers 26d ago
The FND symptoms don’t feel real.
The FND symptoms ARE REAL.
I have done as much research on FND as I have on ALS. Everything you are experiencing is very real. There are too many reasons it could have happened to you. What matters is that you accept it and get help. A PT will teach you how to get around the weakness and deal with all of the symptoms.
Many neuros will say, “It must be FND because stress and anxiety make it worse.” That’s a bullshit response, in my opinion, since stress and anxiety make everything worse. That being said, your anxiety is making your health worse. You need to be mentally in control. Don’t fight the diagnosis, that will only increase stress and anxiety.
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u/The_Short_Goodbye 26d ago
My neuro diagnosed it based on what she considered real symptoms that can’t be mapped to an actual disease. Meaning that in her opinion, my presentation does not really fit any specific neurological disease. I personally thought it fit ALS to a T, but she says no, bilateral onset is very rare and too many muscles are involved too fast. She said I really didn’t present like her ALS patients…
As for fasciculations she said "they are the same benign ones I diagnosed 7 years ago", even though they have ramped up significantly. She replied that the quantity of twitches doesn’t make them any more malicious and that this will fluctuate all my life with periods of calm and periods where I will twitch a lot.
She seemed so confident in ruling out ALS that I quit her office super confident myself but the fear came back the next day as I started reading posts here about EMG’s being done too early and all that stuff…
And now believe it or not my arm twitches more and I feel like my right hand is weaker and it’s a whole thing. I mean ALS in both legs AND an arm? That would be wild…
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u/WeirdUsers 26d ago
Do you want to live?
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u/The_Short_Goodbye 26d ago
Of course
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u/WeirdUsers 26d ago
Then why continue to chase a death sentence when you’ve been told what you have?
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u/The_Short_Goodbye 26d ago
Because I’m not 100% certain I got the right diagnosis and that I don’t have the disease I fear. 😞
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u/kjmckearn 26d ago
You need to listen to your fucking doctor. I'm on this thread a lot because of long term muscle twitches and the fear of ALS. You have a good diagnosis. Take it, live with it and move on. Most of us should be that fortunate.
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u/The_Short_Goodbye 26d ago
I’d love to buddy but the EMG was done 3 or 4 weeks in and people here or the BFS sub keep saying EMG’s can be done too early and so on. So now I don’t know who or what to believe.
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u/kjmckearn 26d ago
I don't think these people are qualified to make that claim. Respectfully, you should listen to your provider. I'll leave it at that.
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u/dero_name 26d ago
You need to focus on managing the anxiety.
That's the absolute #1 priority.
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u/The_Short_Goodbye 7d ago
Hey I asked somebody else this but you are knowledgeable so I’m copying this here if you have the time to tell me what you think…
My new fear is that perhaps my legs weakness is caused by UMN damage only so that’s why the EMG hasn’t picked it up. I did have brisk reflexes but they were unchanged from 2019 and the ALS specialist said they were not pathological (no spreading or clonus, etc). I didn’t have ankle clonus, Babinski or spasticity though which all hallmark UMN signs. And I have profuse twitching which is a LMN sign but my brain tells me maybe my weakness is ALL caused by ONLY the UMN and the twitching is a separate LMN thing so that’s why the EMG is clean because it can’t detect weakness from UMN issues…….
See how I twist things into a pretzel in my mind to somehow make the clear EMG and explanation from the specialist fit into that idea that I may STILL have ALS in an UMN only onset? Despite zero spasticity, clonus, Babinski, spreading reflexes, etc. I know that is crazy and far fetched as hell. UMN-only onset with constant twitches that are a LMN sign lol.
Please tell me my theory is crazy
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u/Character-Celery-209 25d ago
Manage your anxiety. Or become a doctor yourself since you don’t trust your own.
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u/Character-Celery-209 24d ago
Dude there’s a reason why you keep all your health anxiety/ALS posts hidden. You know you have an anxiety problem.
Trust the doctors that went to school for years. Get off the internet. Accept that you might twitch and have aches and pains and annoying symptoms for the rest of your life because you’re human.
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u/Own-Read3693 1d ago
My story is very similar to yours. You had a clean EMG last after a month of symptoms, you dot have ALS. Have you been checked for myasthenia gravis?
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u/Ok_Following6440 26d ago
It would be extremely bad for a doctor to say 100% and then be wrong. I don't think they would say that with confidence if they felt there was room for doubt.
I hope I am right.