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  • Hi
    just saw your message..I dont want to sound like im complaining but this is hard and so frustrating for me.There are so many ways that i can improve my husbands quality of life but he wont let me and wwe are both suffering..I have been on a loveseat(not a couch) since may because he sleeps in the den in a recliner..I have a hopital bed in the garage ,as well as a wheelchair and hoyer and he wont hear of it..he hasnt left this room since august...i think there are menatal issuses but he wont go back to clinic..he doesnt want to hear any more bad news..for us i belive ther are berathing issue as I am up every hour most nights to open window,turn off heat suction..etc..he needs mophine for pain and ativan for anxiety but wont take either..is about 80 % paralysed,cant speak..eating is scary and he has aspiration every time he drinks,,,he cant swallow his own saliva and chokes often,,,got to run he needs me ..more taker
    Hi Donna!! To send me a message,click on my name and write on my page. These posts you made here, are on your page, nobody will see them. To start a new thread you need to click on the subforum you want to post on(most likely the current caregivers forum) and hist new thread. HUGS Lori
    well back from mayo with no new news. The neurologist there said it "POSSIBLY was als and we have to wait and see". mentioned something about emg being better than the first one done at ucsf, but im not sure we heard that right or not, he was smiling thru his whole speech to us. I wanted to ask if he were amused, but refrained. So we have no new news, its still the wait and see. We are on 9 months and still in left hand. He is using it but no visual changes (meat on hand/lack of thinar atrophy/etc).
    wright...please...what do yu think?
    well, on our way to mayo for some answers...hubby still the same after 8 months. had an emg done with spine surgeon which showed no als, however als specialist at ucsf does not take the emg into consideration as she says must be done by same emger to know for sure. hubby says hand feels stronger, and is using it. funny thing, he wears a resting hand brace at night..when he wakes up, his hand (fingers) can move side to side like normal...10 minutes later without brace, back to claw look and his pinky doesnt move side to side. So odd. what is your opinion Wright?
    Hello again and sorry for once again not getting back to you sooner (I have been very busy). Given the history of your husband and the multiple findings of the EMG (pointing to various conditions as the neuro stated), it is difficult to really decipher things. One thing on your side is a lack of progression in such a long time frame (that is not typical of ALS). One other thing on your side is the improvement in his strength (albeit small), which is not typical of ALS.
    Pain during a discogram is not that unusual, so there is nothing to make of it.
    Bottom line: be cautiously optimisitic that he doesn't have any life-threatening or even life-altering, especially given that he shows no signs of slowing down.
    Sorry it took me so long to respond (I was out of town and very busy). I don't want to comment on your EMG without knowing your symptoms and history. Could you share please?
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