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Nikki J

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I don’t think it gives you an answer. It is a piece of the puzzle that the doctor has to put together with everything else

I am confused. Is she diagnosed with ALS or not?
 

KarenNWendyn

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From your other thread, it looks like you have an appointment May 12. Is that for a second opinion? Make sure to bring all your test results. Hopefully the doctor you see can put it all together for you. Just like in your other thread, we noted that some other conditions that resemble ALS may still be possible.
 

rafiksq

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Correct she's going to another hospital 12 of May. Yes I know that als is most possible then before. I'm so confused becouse in 15 october her speach was slowly then before, fingers in left and right hand was bent fingers and couldn't straighten and legs was weaker but emg and eng didn't show that any motor neurons damaged just neuropathy peripheral. And after 3months in hostpital they made tested and all motor neurons damaged.
 

rafiksq

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from the 1.5th week, my wife stopped breathing through her nose only through her mouth, day by day it was worse, from 2 days only by using an oxygen concentrator. Unfortunately, yesterday, the wife was taken to the hospital, her condition was determined to be very serious. Diagnosis of pneumonia. The doctor at 1 am, after all the tests, said that they would not resuscitate and intubate because the condition was severe and only the treatment can prolong the agonist. He said it was a matter of hours, up days. I told them, and if I do not ALS ? I would be asked to wait outside.

At 1.30 the wife was transported to the rooms and connected to oxygen, it turned out that her antibiotic and some electrolytes were also given.
I ask the dispatcher that supposedly an antibiotic should not be given because the doctor does not see a chance and does not want to tire his wife. I received information that they do not know who said it because my wife has treatment turned on. Next antibiotic at 13:00. before 4.00 I came home. at 8.30 a phone call from the hospital that the wife is quite unusually positive and quickly responds to treatment. At 11:30 am, the medical council gathered to intrave the wife against her will, because of the great possibilities for cure. 10h Was my wife dying ???!

She was transferred to another hospital for intensive therapy. She is in a pharmacological coma, intubated. I was today, when she heard me, despite the coma, she opened her eyes and winked at me that she could hear me, her tears began to flow ...: (((((

Headmaster, when he learned that in September she was on the yacht, he said that there is no option, I showed the picture on fb with the date. She said in silence that we would be in touch.
 

lgelb

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I'm very sorry about your wife. As we have mentioned, we are not sure what illness she has, but people with many different illnesses may recover from pneumonia. Of course, we do not know the particulars of her condition.

If her condition stabilizes and there is an opportunity to re-evaluate the diagnosis as possibly MMN or lupus or another autoimmune condition, a trial of appropriate therapy might be a consideration.

Since she is now in hospital, if she does make it through the present illness, perhaps they could provide a means also for her to receive a BiPAP and suction machine to support her breathing and control secretions.

Again, I am very sorry for what you both are going through.

Best,
Laurie
 

rafiksq

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Is it possible to get a negative test about motor neuron damaged when patient has a little problem with speech, hands and legs?
Someone hears that als disease can begin with week speech, problem with straightening your fingers in hands and week legs but after eng and emg test get negative result about motor neurons?
 

Nikki J

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Hi
Your posts were merged and moved as it appears the diagnosis is very much in doubt. Such dramatic symptoms as you have described here and elsewhere and a normal emg would be very very unlikely to be ALS
 

KarenNWendyn

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Is it possible to get a negative test about motor neuron damaged when patient has a little problem with speech, hands and legs?
Do you still have an appointment May 12 with a specialist?
Is she still in the hospital for the respiratory problem?
I believe you said that her EMG did not show motor neuron damage.
So it doesn’t sound like ALS. I hope she is still able to see the specialist. The specialist should be able to put this all together for you and answer your questions.
 

rafiksq

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She will but not May 12, now we waiting for tracheotomy and then they can tests her again.
She is still pharmacological coma and intubated but last 3 days when I have visited her in hospital she has open eyes and reacts to my questions.
She doesn't know why she is in hospital and what happend, not know that she has als.
It's strange that she doesn't remember nothing from 20 July 2018 when she got first symptoms. She remembers what we did 10 July 2018. She doesn't remember begin of August when her sisters come with children and end of month when we went on holiday.
 

rafiksq

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Is it possible to get eng and emg test with peripheral nerves damage without any motor neuron damaged when the problem is with speech, legs and hands ?
 

rafiksq

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Please tell me, is it possible to get emg test with just peripheral neuropahty but without any motor neurons damages when wife had a problem with speech, fingers and weak legs ? So when we have physical damages but not any motor neurons damages and after 4 months all motorneurons damages, umn lmn, bulbars ?
 

Nikki J

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Lower motor disease is shown on the emg. If the emg is normal the person does not meet the criteria for ALS and should not be given the label. Umn disease is primarily a clinical diagnosis and would be made by the examining doctor. You have reported far too many symptoms to be a pure bulbar motor neuron presentation but again emg and or clinical exam would be the keys here.

If her tests show only peripheral neuropathy and no motor neuron disease in spite of dramatic symptoms that you report I can not understand why anyone is calling this ALS. What are the doctors saying? I thought they said it wasn’t ALS?
 

rafiksq

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Today morning she was taken to Medical Academy in Gdansk becouse the head of neurology who is professor and often goes to USA to learn.
Tomorrow they put her diagnose, today she had emg and eng tests but i haven't known yet result.

But by the way, first symptoms fascyculation in thighs both, in October 2018 she had problem with fingers in hands (left and right), problem with climbing stairs and slowly speech but eng i emg in 2 diffrents labs made test and noone motorneurons was damage. I read that if somebody has problem with above symptoms that emg must show motor neuron damaged. After 3,5 months in hospital they made emg i eng and all motorneurons was damage, bulbar symptoms and pyramid changes. For my it is so strange.
 

rafiksq

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Second hospital confirmed advanced als diagnose :(
 
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