Recent content by Emanol

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    Migraine after PEG

    Thank you everyone for your suggestions! So we basically followed through and my dad much prefers normal food. It's gotten to the point where he gets dizzy simply by seeing the formula, even h without ingesting it. A previous formula that was tried also was very unpleasant to him. He has always...
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    Migraine after PEG

    Hello, My father had his PEG inserted recently (January 4th). After the surgery, and in these last days, he has been suffering from recurring headaches. He is now vomiting his meals and suffering from migraine-like symptoms. As we wait for the doctor, I was wondering if anyone had experience...
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    Doctors suggested my dad to get a PEG

    Thank you everyone! We have decided to go ahead with the procedure. It will be helpful and he will still be able to eat the things he likes most (pureed fruit, etc). Thankfully his breathing score has stayed the same since 2017. We are very grateful that his ALS, which is heavily UMN dominant...
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    Doctors suggested my dad to get a PEG

    Hello everyone, After some years with UMN dominant ALS, doctors finally suggested my dad to get a PEG. Apparently, they found out he is no longer swallowing properly and there are food remains. He took it quite badly, since he really loves eating. He has not lost any weight since he began with...
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    Inflamed tendon

    Hello, Today my dad (PLS /UMND) was being massaged by the physical therapist and she noticed that he had an inflammed tendon. Unfortunately, we will not be able to go to the doctor until next week. Any advise as to how to deal with it in the meantime? He says that it hurts quite a lot. It's in...
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    Strange family history

    Thank you for writing! Forgot to mention that the three of them have always suffered from very significant migraines, unlike other people in the same family. Maybe connected as well?
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    Strange family history

    Dear everyone, I hope this email finds you well, given the circumstances. I posted a few messages some years ago, when my father was first navigating the path to diagnosis and the immediate aftermath. I have always been amazed at the kindness and helpful information that I found here. If you...
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    Mills syndrome

    Thank you all!
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    Mills syndrome

    Hello, Some of you might remember my father´s case: early diagnosis of Parkinsons revoked, he was on the ALS / PLS limbo for a long time. Afer a second opinion now confirmed by our primary neurologist, it appears my father has a very strange variant of Motor Neuron Disease called Mills...
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    PBA

    Thank you. I´ll ask the neurologist when we have the next appointment.
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    PBA

    Hello! Back in this forum after a few months! My dad has been steady: UMN signs progressing and no LMN signs as of yet. I am writing to you to ask for advice regarding the management of Pseudo-Bulbar Affect. My dad´s outbursts of laughing and crying have been getting worse and it is starting...
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    Predictive model based on ALSFRS-R score?

    It's tricky. He has no signs of LMN involvement at the clinical level, but a third EMG revealed slight if mild abnormalities (fasciculations in several non-bulbar regions, albeit without active denervation)
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    Predictive model based on ALSFRS-R score?

    Glad to know! The thing is my dad does not really like to get help... he still dresses himself, cooks, sets the table, etc. I am glad he is still able to, but sometimes I also wonder if he should not save his energy for something more meaningful than the daily chores. Since he has had no...
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    Predictive model based on ALSFRS-R score?

    Hello, Does anyone know a good model of disease progression based on ALSFRS-R score? My father was told his score was 38/48, after 2.5/3 years since symptom onset. Could anyone point me to a good resource where rates of progression are plotted?
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    Breathing regular checks

    My dad is completely open for an early implementation of BiPAP and would definitively choose it if it were needed or recommended. However, so far he has not complained about breathing and his FVC remains above 100% (other measures are good too). I guess we will wait and see how it goes. We...
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