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Doreen AM

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@doreen

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    Doreen AM replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 week, 3 days ago

    I had responded previously that my husband had taken Relyvrio for 6 weeks and had no side effects. Unfortunately, shortly after sharing that, he began experiencing GI *side effects that were keeping him homebound. We stopped the Relyvrio and the side effects went away. His doctor said he can either try a smaller dose or stop it completely. He…[Read more]

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    Doreen AM replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month ago

    My husband has been taking it for about 6 weeks. We have not noticed any side effects. The bitter taste (and it is bitter) is not an issue for him as he takes his via his G-tube.

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    Doreen AM replied to the topic Feeding Tube and Syringe in the forum Living With ALS 2 months ago

    Hi John. The end of the feeding tube that sticks out from the belly has an adapter so that the syringe can be (sort of) screwed into it. The type of syringe needed is an ENfit syringe. When you leave the hospital after getting your feeding tube, please make sure they send you home with an ENfit Syringe. After that, you will likely get your…[Read more]

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    Doreen AM replied to the topic Feeding Tube and Syringe in the forum Living With ALS 2 months, 1 week ago

    If you are within an hour of Boston, I can bring one to you.

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    Doreen AM replied to the topic Feeding Tube and Syringe in the forum Living With ALS 2 months, 1 week ago

    Sonsu, do you have a contact person you could call to get the correct syringe to you?

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    Doreen AM replied to the topic Feeding Tube and Syringe in the forum Living With ALS 2 months, 1 week ago

    I am wondering if you could have been sent the wrong syringes. It happened to us once. They sent us a bunch of catheter tip syringes instead of EnFit Tip syringes. My husbands G-tube was recently changed (4 months ago) and the end of the feeding tube is the same as it’s always been.

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    Doreen AM replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 3 months, 1 week ago

    My husband’s neurologist recommended the 2nd booster. We got them together on Monday.

    Our vaccination has been: Moderna (initial), Moderna (subsequent), Pfizer (booster 1), Pfizer (booster 2).

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    Doreen AM replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 6 months ago

    Hi. My husband first used Atropine drops for excessive saliva. That worked for a while and then the issue progressed and it did not work. Then he tried Glycopyrrolate and he did not notice any improvement with that. Then he had Botox injections in his salivary glands. The dosage that works for each individual varies greatly therefore they start…[Read more]

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