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Emanol

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Hello,

I am going to share with you my father's current symptoms. I am a bit worried about him and would like to know your opinions

My dad was diagnosed with Parkinson's disease and treated with levodopa for 3 months. Since the drug was not very effective, they did a neural imagining test and the result came out negative. They are now checking for other diseases and I am afraid it might be ALS...

My dad has had no fasciculations or twitching, but he has extreme weakness on his right side (first the hand, then the foot). He has trouble turning in bed and tends to lose the balance. He has no noticeable speech problems. He also has problems holding his urine. No pain so far.

They did do a EMG and supposedly the result came out negative, but I have read that it is not a definitive proof. They are going to repeat the test for Lyme disease (there have been several cases in the surrounding area, so it's a possibility) Nevertheless I'm afraid. How likely is it for someone to have ALS without twitching? Weakness in his hand started about a year and a half ago and my dad currently uses a cane most of the time (I do think the progress seems on the slow side for what I've seen of ALS patients)

Any ideas? Any help would be appreciated... I am quite new to this world
 

KimT

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The EMG would show something if he had hand weakness and it was ALS.

Just have him keep working with his doctor.
 

Emanol

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Thank you for your prompt response. May I ask, then: why is it that I repeatedly read that there is no definitive test to confirm ALS? How come his EMG would have definitely shown something if he had the disease?
 

lgelb

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There is no single test for ALS as there is for, say, tuberculosis, or seeing a brain tumor on a scan. But the EMG in combination with clinical examination, the patient's history and ruling out other causes, allows physicians to be definitive in most cases.

Not having twitching means much less than a negative EMG.

I doubt Lyme could be the sole issue. Given what you have described so far, I hope that his brain and spine were both scanned?

Best,
Laurie
 

Emanol

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Brain was scanned already. He is scheduled to have a lumbar puncture soon, so hopefully that will reveal something more concrete.
 

lgelb

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But no spine imaging as yet?
 

Emanol

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He has had both, I believe.

How definitive is the negative EMG, then, according to you?

Interesting what you say about Lyme, since the doctor seemed to lean towards that on our last session... what is it exactly that does not fit according to you?
 

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Welcome to what I like to call purgatory. I was in the diagnostic process for 2 1/2 years. The clean EMG is good news. EMG abnormalities would show up before symptoms, so no trouble with the EMG is great news. What else could it be? We only know ALS and aren't doctors either. So good luck finding what it is, just know you are in the part of medicine where doctors are confused.
Vincent
 

lgelb

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As Vincent says, only one of us is a doc, and it's not I. Take the following with your normal grain of salt, and then I think as you say, CSF may tell a tale.

A negative EMG after somewhere around a year and a half of weakness is pretty definitive evidence against ALS. We might still entertain pure upper motor neuron disease (PLS) if the features fit.

Lyme gets blamed for a lot, but I have seen no high-quality studies suggesting the degree and types of impairment you report, relentlessly progressive and unremitting, can confidently be linked to its causative organism.

This review includes the features seen in myelitis linked to Lyme features requiring hospitalization in one large case series. There was no bladder dysfunction nor failure to appreciate myelitis on imaging. The encephalitis cases, who share some features with your dad, don't seem to fit, either. So while it's possible he has Lyme (though fishing past negative tests is a questionable exercise), I wouldn't be inclined to attribute all his issues to it.
 
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Emanol

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Thank you all for your help. I am very glad I have been able to find the guidance of sensitive people like you in these difficult times.

Since I don't know much about ALS, I wanted to ask you also about the speed of its progression. I do know every case is different. I have talked to my dad and he first noticed weakness in his left hand (the whole hand, not just a finger) on June 2016 (almost two years ago). He still leads a normal life -he cooks, drives, eats by himself, gets dressed by himself, speaks without slurring speech, walks (without a cane at home, with a cane when longer distances of about 2km or so). He does feel fatigue and weakness on his left hand and foot -he is still able to hold things on the left hand, but feels a lot of "clumsiness" as he says. How does the speed of this progression compare to cases of ALS in general? I had the notion that ALS would often progress more quickly, but then again I have no idea about these things...
 

Emanol

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Something else to notice, that I forgot to mention, is that my dad has been dealing with longterm constipation in addition to his urine problems. Also, in the past years, he has been dealing with depression, which might or might not be related to his disease. For what I've read, bowel and urine problems are uncommon in people with ALS. Is this right?
 
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Romeosc

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My EMGs were negative for over a year! I had clean brain, and back MRIs and spinal tap ruled out NPH which has all same symptoms plus incontinence....

Only when I went to Mayo in MN did they diagnose me with ALS! They did EMGs on legs, back,arms etc..
 

Emanol

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They did EMGs on both legs and arms for my dad and everything came out clean, so I am hesitant to believe that the results were inconclusive...
 

lgelb

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Bowel and bladder issues are not uncommon in ALS once there is loss of mobility, but would are not typically seen in early disease.

Still, mild-moderate incontinence and constipation are pretty common in older people so I'm not sure we can say for sure that they are part of the larger picture of why he has weakness, whatever the cause of that weakness.

In sum, everything neuro and beyond should be considered as the neuros are doing for your dad, as what this comes down to his symptoms don't match up with ALS that well, and he had a clean EMG.
 
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