FND/BFS vs ALS...? Constantly progressing weakness...

[downfieldbe]

Hi everyone

I'm aged 36 and male (UK based), and for circa 24m have been on a notable downward trajectory physically. Very grateful indeed for any input. (previous thread here)

I've dealt with symptoms of (supposedly) Functional Neurological Disorder for at least 15 years, which have waxed and waned in that time but never disappeared.

Symptoms like:
Limb/hand/foot weakness (worse on the right side)
General fatigue
Speech/swallowing issues (pre-slurring, excess saliva, weak voice etc)
Fasciculations (all over the body)
Numbness/tingling
"Tightness" in the leg muscles

Still nothing that has ever been strong enough to be observed externally (thus far), but I know that I feel it and that it's "genuine" (!).

Anyway, 2021-23 was a period of EXTREME stress for me, and for the last 24m or so these symptoms have gotten gradually noticeably worse, without remission (unsurprising that my stress levels have had some kind of negative effect). A marked change vs how they were before (waxing and waning but overall mild, vs now much worse and stably going downhill).

I had an EMG summer 2023 which picked up "widespread chronic denervation" - and some "active" - and concluded "the clinical cause is uncertain but this is not simply FND" (EMG shown in photos marked "1"). ALS alert?!!

Despite this a neuro this year told me EMG interpretation is SUBJECTIVE and the clinical exam is the most important element - which was normal. In his words, "absolutely not ALS". He also ordered another EMG 6m ago which came back clean & normal (shown in photos marked "2"). A second neuro was then of the same opinion - "I guarantee you don't have ALS". Do EMGs often show up this differently...??

I know it might sound silly based on these neuros' verdicts but I remain concerned and wonder if after years of extreme stress I've "triggered" ALS that is still sub-clinical (either that or/and I've strongly exacerbated my "FND"...?). After all, a neuro clinic exam is only a brief look at one's overall functioning. God knows my day to day life is pretty restricted at the moment due mainly to significant weakness/exhaustion. Even a half hour walk is a bit of a mission right now. No question that it's getting worse.

I've read one too many stories on forums about neuros getting it wrong or confidently dismissing ALS (as in my case), and ALS later ending up as the diagnosis after all...

I think I'm going to try and get an appt with an ALS-specialist neuro, and maybe a third EMG (especially as the two so far have been so different). If this isn't ALS I don't know what the hell can explain this sort of downhill physical dysfunction.

Hugs to all of you...

 

[JAM]

I hope you get some answers, not knowing is hard and scary. I’m sorry you’re going through this

 

[lgelb]

These EMGs are not as far apart as you make out, just formatted differently. Neither raises concern for ALS. If a specialist opinion will reassure you, go for it, but the reading you are doing is clearly anecdotal and selective memory. There is no reason to read more.

If you are having normal exams and nothing that is "seen externally," after two EMGs and 2 years, it's very hard to understand your concern re ALS, but there are all kinds of other possibilities, from a sleep disorder to long Covid. That someone says, "maybe this isn't FND" is a country mile from being something dire.

There is simply no reason to believe your issues are neurological from what you've described. There is not enough acute denervation to define ALS (or anything else) and without significant acute and chronic denervation, the fact of "mild chronic denervation" [sic] really means nothing. There is no "ALS alert." Nor do your diffuse issues resemble ALS onset as we see it here.

If early fatigue is the major issue, and that can certainly be disabling, I would find a GP or rehab specialist who can work the issue with you. There are thousands of diseases, most of them systemic, in between your feeling awesome and ALS.

Again, I would stop reading about ALS, and keep living. As for a third EMG, given the overtaxed UK system, I would suggest you leave it for someone who really needs it.

 

[downfieldbe]

Thankyou Igelb for your reassuring response. Especially if you feel the first EMG is NOT cause for concern.

I’ll try not to be offended by the remark about “selective memory”...! I’m not an ALS expert by any means but I always try to be as logically consistent as possible, especially on a serious subject such as health.

Perhaps you could elaborate on why you don’t find the EMGs too “far apart”? Surely one of the two must be very much incorrect, if one is “normal” and the other speaks of “widespread chronic denervation” (even if “mild”). Indeed, the second chap notes that his EMG interpretation differs from the first...you’re saying it’s a negligible difference, in effect? And for ALS you’d have to see stronger signs/extent of acute and chronic denervation?

“There is simply no reason to believe your issues are neurological from what you've described” – both neurologists so far have said my condition is indeed neurological, just that it is “functional” rather than a sign of organic disease. Perhaps this is what you mean to say? The first neuro agreed with your saying that my issues are too diffuse for ALS (although given that FND often co-exists with other neurological conditions, I don’t see that diffuseness of symptoms alone rules ALS out).

The national health service in the UK is indeed woefully overtaxed – as with my second EMG I’d be going private for a third. My sincerest sympathies to the souls who cannot afford to do so and are waiting many months or more for appointments at the moment...

Finally, I appreciate I might come across as excessive in my need for further medical checks. What can I say, it’s concern about a very serious disease and my symptoms are worsening with some pace. If an ALS-specialist neuro says there’s nothing to be concerned about, I can’t ask for fairer than that and I’ll have to look elsewhere for symptom solutions.

 

[Nikki J]

It isn’t unusual for mild emg findings like your initial one to resolve. We have seen it here quite a bit. FND wouldn’t cause the findings on emg 1 but could coexist with them Sometimes it is just a mild muscle condition that resolves itself.

If you are sure that an ALS specialist visit will let you leave this behind if you are cleared then go for it, assuming you can afford it privately.

Are you under the care of an fnd specialist? I know they exist in the UK probably more commonly than here. Assuming ALS continues to be ruled out as I believe it will it would be my next stop if it hasn’t happened

 

[lgelb]

By "selective memory," I was referring others' accounts, not yours. There are a lot of ex post facto accounts where people think their diagnosis took longer or was more complex than it was. Often, that is due to delays in seeking care, waiting for appointments, etc.

The way EMG reports are written can be like a movie script, where you emphasize different things. The way the results are compiled in the table also varies across different groups. Today, it's a sunny day in Seattle. I could write that as a sunny day or that I don't see many clouds.

As to whether your issues are neurological, my point was that there is no neurological condition that explains them all as I read what you have written and what the EMGs say. Thus, it would be wise to receive followup with someone who looks at things more systemically.

 

[downfieldbe]

Thankyou both for your responses.

I've made a neuro appt for next week with someone who specialises in diagnosing (/ruling out) ALS. I'll respond after that if I may.

 

[Nikki J]

Please do. It is helpful to see what happens