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perplexed

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2nd EMG slight change, saliva, swallowing and speech issues - prepare for ALS diagnosed?

I think the doctors are trying to prepare us for a DX of ALS though they say there are still two options, myasthenia gravis, and certain myopathies.

My husband started having swallowing problems three months ago, along with saliva pooling in his mouth and throat and lots of mucous, which affect his speech. The first EMG was clean, two months later, the second EMG showed some progression but nothing "definitive" the neuro says. She detects some muscle weakness but not atrophy, and he is scheduled for a single-fiber EMG and nerve and muscle biopsies soon.

However, she said that while only 30% of ALS cases present like this (no muscle tremors, cramps, twitching), what leads her slightly to think of ALS more is the saliva production.

Has anyone else heard or or experienced this?

He's at the Neurological Institute in Montreal.
I thank you all.
 

Zaphoon

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Somebody kick me if I'm wrong but the saliva thing has to do with lack of swallowing. You are not actually producing more saliva, its just that you are not swallowing as frequently, thus the pooling.

Zaphoon
 

brooksea

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Yes that is what we have been told also Z. Bulbar onset.
 

rose

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Zaphoon, I'd never kick you, but I was told that excess saliva is of an upper motor neuron origin. Swallowing difficulties exacerbate the problem. I believe there are PALS that have excess saliva, but do not have other bulbar involvement (this however, I could be wrong about). I've asked specifically about this at my clinic visit down at Hopkins, because, as many know, I have the opposite, i.e. dry mouth, and dry eye too, and they explained to me that both are part of the disease, but that excess saliva is much more common. I have heard that the excess saliva was due to it being a "reflex" but when I asked that, they said not exactly for that reason, and there was more explanation that I really didn't follow closely enough to try to lay out here.

A weak swallow does make it much harder to get rid of saliva (I guess LOL) or other liquids in the mouth. It takes several swallows for me to get anything to go down, and then there is still residual after I think I've got it all down.

Perplexed, I don't have any answers for you, I wish I did. I do think he needs to have more specific testing, as swallowing difficulties usually come after speech problems, not before, in those that have ALS.
 

BethU

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Bend over, Kim :) ... I understand that a variety of things can go wrong with saliva, driving bulbar-onset types like me crazy, including over production of saliva, under-production, etc., etc.. Even wearing the Scop patch to reduce saliva flow, any time I eat or drink anything, it triggers a flood of saliva that lasts for a half-hour or so. I have to stuff paper towels in my mouth to catch it all until it quiets down again.

Where the "not swallowing as much" applies is in the thickening of the saliva. Since it's not being swallowed as frequently, it "condenses" on the floor of the mouth. However, other things can contribute to thick saliva too, such as dehydration, which I think is part of my problem, since it's so hard to get anything down ... especially liquids ... so I simply don't drink nearly as much fluid during the day as I used to.

If I'm wrong, feel free to kick me ... (gently) :)
 

Zaphoon

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Beth and Rose, thanks for the kick! I have learned from both of you and I'm sure many on this forum have, too. From now on, I will leave the excess saliva, dry mouth and swallowing comments to you that experience them.

I'll stick to twitches, needles, high voltage shocks and such.
 

chris_uk

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I think the doctors are trying to prepare us for a DX of ALS though they say there are still two options, myasthenia gravis, and certain myopathies.

My husband started having swallowing problems three months ago, along with saliva pooling in his mouth and throat and lots of mucous, which affect his speech. The first EMG was clean, two months later, the second EMG showed some progression but nothing "definitive" the neuro says. She detects some muscle weakness but not atrophy, and he is scheduled for a single-fiber EMG and nerve and muscle biopsies soon.

However, she said that while only 30% of ALS cases present like this (no muscle tremors, cramps, twitching), what leads her slightly to think of ALS more is the saliva production.

Has anyone else heard or or experienced this?

He's at the Neurological Institute in Montreal.
I thank you all.

How common is it for people to have a clean EMG the months later a dirty EMG? that is the scary part isnt it !

I hope you dont get a DX of ALS !

Chris
 

ptich

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Just wondering - what is single fiber EMG ?
 

olly

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i have had the excess saliva pooling under the tongue and need to try to swallow more,i have choked on it sometimes when i have not done this.
i only have umn bulbar involvement.
it funny rose you mentioning it as a reflex thing,in emotional liability excessivley yawning is a symptom.
when the jaw spasms are bad i can yawn all day.
 

rose

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Perplexed/Erica

There is a test for MG that I don't remember being discussed here. I'd been trying to remember what it was ever since reading your first post. It is called the tensilon test, and it is done as another part of EMG. It is only available at the more specialized medical centers.

The doctor will inject a small amount of this substance in the affected muscle, and if the person has MG, the muscle will regain its strength immediately from this injection (temporary effect).

The first EMG I had done, was of my vocal cords, and my laryngologist was performing it in tandem with a neuologist. She (my doctor) wanted to continue on with the tensilon test after the EMG showed the denervation.reinervation pattern, but the neurologist refused. He said I could not have MG by what the EMG found. He was adamant. (and I never had it done anywhere else either).

So, within the medical community, levels of understanding MG versus ALS have quite a variance. In my own situation I found it interesting (in a miserable sort of way) that for so long no one knew what I had, only what I didn't have. There was no interest in the test I was talking about (above) or muscle biopsy or the lumbar puncture. Whatever the subtle difference in symptoms or what was found with exam, had already ruled out the usefulness for these types of tests for me.

Perhaps you can ask about the tensilon test, if it is ever done at the facility your husband goes to.

good luck! :)
 

CindyM

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My local neuro told me the tensilon test has been dis-approved by the FDA. (If I recall correctly.) He said this is one reason why MG is so hard to DX.

They re-did my blood work last fall but did not find MG. The neuro said that what we read here on these boards is true- a high percentage of patients test negative for MG in the bloodwork.
 

perplexed

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It isn't MG according to the 3rd EMG, and three different neuros have different views

Thanks everyone.
My husband just had the 3rd EMG (second single-fiber EMG) and a nerve conduction study - both were clean. The neuros who did the EMG said this rules out myasthenia gravis, but that there are many other conditions whose symptoms mirror ALS and that "currently" he doesn't have the criteria for ALS - no weakness, no atrophy. He has a slightly weak tongue muscle, lots of pooling saliva and difficulty swallowing.

However, the "chief" neuro of the Insitute had told me that what my husband has is "one of three things - ALS, myasthenia, or a myopathy."

Why would different neuros say such different things about potential options for a DX, all having done extensive neurological work-ups on the same person? He's had a clean MRI, clean CT scan, and the modifed barium swallow shows a weak epiglottis.

Anyone else ever been in the same boat?
 

BethU

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I was diagnosed with MG by a neuro in private practice (without doing any tests whatsoever ... he was my "third opinion"). The MG Assoc. has a free clinic associated with UC Irvine, and I went to them for test, confirmation, whatever. I was first interviewed by a "fellow" at the univ., who said, "You don't have MG, you have ALS." Then his superior came in the room, and much discussion ensued. The superior said, "I don't think it's ALS, but there is something else going on."

So I was scheduled for an EMG, etc., and it was determined at the next appt that it was ALS not MG. I never saw the "something else going on" guy again, alas. He was the head of the clinic. But time is showing that it is ALS.
 

perplexed

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Terrible roller coaster

Hi Beth,
You are extremely entitled to resentment for people having put you through any unnecessary emotional roller-coastering whatsoever. I hope they are never in position of relying on each and every word someone utters. It sounds as though (correct me if I'm in error) it was the EMG that clinched the DX. I think as much as we need knowledge, people in authority positions, ie doctors, should keep their mouths shut until they know.
Cheers,
E
 
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