ALS or some other MND?

Nikki J

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ALS remissions are extremely rare. Dr Bedlack studied them and after extensive research found reports of 22 cases including 2 of his own patients. Some of the 22 may have been misdiagnosed. There is a theory that some people have resistance to ALS as others do to HIV. This is also believed to explain why some genetic carriers in highly penetrant strains do not get ill.

Others may have responded to some treatment. Nelda Buss being a famous case.

Plateaus are more common than remissions.
22 reports found by a neurologist actively searching records and hooked into the ALS community means this is exceedingly rare. Such cases would not go unreported
 

IssuesInOhio

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Really? That’s news to me. I’ve always been taught that ALS is relentlessly progressive. Laurie or Nikki?

Was this neurologist a neuromuscular specialist?
Also, what kind of neurologist would not do strength tests?

We’ll see what the EMG shows. I’m betting it will reassure you.

I thought it was peculiar that he said that as well bc I didn’t think that was the case (I even talked about it with my wife on the way home that I didn’t think that was true) but since it wasn’t really relevant to my situation (since I was previously cleared 10 years ago with clean EMGs) I didn’t question him further on it. He is a general neurologist, not a neuromuscular specialist, and works for a pretty reputable hospital, with at least 10 years experience but not sure exactly how much.
 

lgelb

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It is considered "relentlessly progressive" because it does not improve, though it may slow down for some time.

A handful of "reversals" have been published, with ongoing research on the whats/whys, but there is no "remission" for a decade as you describe. Stay away from the guy who said that.

Did the spine guy do strength testing? Despite your concern, "perceived weakness" barely belongs in a chart note -- there should be formal strength testing or there is no point in discussing weakness. And as you have read here, there are many reasons for atrophy, which is very seldom ALS, esp. in the absence of a loss of function.

As for the indication for the EMG's being "possible MND," the neuro may be taking cues from you to minimize debate and/or get you in early as possible for the test so you are out of his hair. Sorry to be cynical. All I'm saying is, that note is not a reason to worry. You haven't presented reasons to worry as yet. Enjoy spring while you wait for the EMG.

Best,
Laurie
 

IssuesInOhio

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It is considered "relentlessly progressive" because it does not improve, though it may slow down for some time.

A handful of "reversals" have been published, with ongoing research on the whats/whys, but there is no "remission" for a decade as you describe. Stay away from the guy who said that.

Did the spine guy do strength testing? Despite your concern, "perceived weakness" barely belongs in a chart note -- there should be formal strength testing or there is no point in discussing weakness. And as you have read here, there are many reasons for atrophy, which is very seldom ALS, esp. in the absence of a loss of function.

As for the indication for the EMG's being "possible MND," the neuro may be taking cues from you to minimize debate and/or get you in early as possible for the test so you are out of his hair. Sorry to be cynical. All I'm saying is, that note is not a reason to worry. You haven't presented reasons to worry as yet. Enjoy spring while you wait for the EMG.

Best,
Laurie
Hi Laurie, thank you for the response. The spine doctor tested my strength on my legs and calves. He stated in his report “perceived weakness”. Not sure what that means bc I haven’t been able to talk with him since. Maybe he perceived it or maybe he is stating that I perceive it. I know I don’t have clinical weakness.

In only a few weeks , I have gotten considerably worse. Maybe that’s an indication that this is not MND, I don’t know. I’ve certainly loss muscle and I feel weakness in my back muscles, hips, and legs, predominantly my right. Both triceps but predominantly left. I don’t know if MND progresses this rapidly and this is more global now. This started in only my hip and calves and has now spread since February and in less than 90 days has gone on to effect all of my muscles. Although I don’t have failure, I can feel a progression of my muscles getting weaker, less stamina, shaking upon exherting them, sore at the end of the day when they shouldn’t be and those darn twitches never go away.

I guess the EMG will tell the tale, we will see.
 

Nikki J

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Perceived weakness would be what you said. Weakness found by a doctor is clinical weakness and would be documented in the muscle testing It is a 5 point scale and normal strength is 5/5. Utterly paralyzed is 0/5

Let us know what the EMG shows
 

IssuesInOhio

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Perceived weakness would be what you said. Weakness found by a doctor is clinical weakness and would be documented in the muscle testing It is a 5 point scale and normal strength is 5/5. Utterly paralyzed is 0/5

Let us know what the EMG shows
Will do, EMG is on next Tuesday. I’m honestly dreading it bc I’m terrified on a bad result. Do they typically tell you results right there or at least give an indication?
 

Nikki J

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It very much depends on the institutional policies and somewhat on the individual. I am assuming it is not your neurologist doing it?

Some places they tell you some won’t. Don’t read anything into it if you get the latter
 

IssuesInOhio

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I’m curious if anyone knows if having fibromyalgia raises the chances of getting ALS or if Fibromyalgia can be a precursor to ALS? The reason I ask is that I’ve been doing research on glutamate in ALS and it seems that in both ALS and fibromyalgia, an excess of glutamate or neurotoxicity from imbalance of glutamate/gaba are stated to possibly play a role. I was diagnosed with fibromyalgia 10 years ago and I suffer from anxiety and stress as well as chronic inflammation from fibromyalgia over the last 10 years. Any studies showing any correlation out there? Thoughts?
 

Nikki J

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I do not believe so. I have never seen or heard it. Someone just asked this regarding OCD. No correlation orincreased incidence there either
 

IssuesInOhio

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Hello- over the last 5 days I have developed choking on liquids like it goes down wrong a couple of times a day, back muscles are weakening by the day, and I have a strange tightness feeling when I swallow. Is the progression of ALS this fast or could this be an indication it’s something else? Only 4 weeks ago this was mostly isolated to my legs and hips, now my back feels so weak that I can see my posture getting really bad and it’s constant pain.

Please give me some input on this? I’m feeling more and more like this is ALS symptoms.
 

KarenNWendyn

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None of that suggests ALS.

You’re planning on getting an EMG Tuesday, correct?

I would strongly suggest you refrain from further posting until you get the results of that study. Hanging around this site only fuels your anxiety.
 

ShiftKicker

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Hi there-

It may be hard, but it's important to wait till you get your emg in order to suss out if there is a neurological issue behind your concerns. Having OCD may also muddy the waters, as it and health anxiety can cause one to be hypervigilant and create symptoms that affect muscles and create sensory and swallowing issues. If you look up "symptoms of anxiety", everything you report can be attributed to it.
 

Kristina1

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How could the neuro decide not to do strength tests???? That's a key part of the clinical exam. Heck, when I saw a neuro for my migraines way before ALS even that neuro did a couple as part of the neuro exam!

It does not sound like ALS at all to me. But update once you've had the emg.
 

IssuesInOhio

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How could the neuro decide not to do strength tests???? That's a key part of the clinical exam. Heck, when I saw a neuro for my migraines way before ALS even that neuro did a couple as part of the neuro exam!

It does not sound like ALS at all to me. But update once you've had the emg.
Hi Kristina 1, I’m not sure why the neurologist didn’t do them? The back specialist did do them on my legs and there was no clinical weakness. Even if the neurologist did do them, im confident it wouldn’t have shown anything at this point. While some of my muscles are weaker and get sore from light use, and are more flaccid and gotten smaller, they aren’t to the point of clinical weakness. I’ll know something on Thursday with EMG I guess unless they make me wait to get the results.
 
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