Lois Anderson
Forum Replies Created
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I understand the fear of a peg tube. In my opinion, G-tube inserted into stomach is preferable and the doctor should have lead with that. Second choice would be the J tube and lastly the nasal tube. You can research the differences. Not easy choices.
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Hi Dagmar…. thank you so much for that link. I had seen the video before and tried them out to the extent that I can. I don’t know if dizzy is the proper term. The feeling I get is a rocking similar to walking on a boat dock over choppy/ water. It happens frequently when I sit up straight in bed or a chair. When I stand up he floor feels slanted. It doesn’t help that I can’t hold my head up due to ALS taking my neck muscles. Thanks for any feedback!!???
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No. The first neurologist was clueless, and the second neurologist recommended neuropsychiatric counseling…all in my head. Went to see my pcp, who observed a very noticeable change in my speech and gait. She immediately recommended I see a neuromuscular physician. After some simple testing he confirmed ALS and thought that I was about a year into the disease process.
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I’ve been on riluzol since February of this year and had a feeding tube 2 months ago. I don’t know why, but I have been dizzy. It could be the riluzol, the formula or something else. My ALS clinic team doesn’t seem very concerned but it’s the difference between being steady on my feet or not.
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My feeding tube was installed by a General surgeon 2 months ago after a failed attempt by interventional radiology due to my abdominal anatomy. In the prep for the ÌR procedure they instructed to drink a bottle of contrast, which I couldn’t do because of my bulbar als. On the day of the procedure they pumped me full of contrast. This lead to severe constipation. In short, I wish I had gone directly to the surgeon. Being 2 months out, all nutrition is via tube. The only complications I have had is making sure I get enough calories and right now I am battling thrush in my mouth which I read is due to the lack of oral intake. Best of luck in your decision making!! Lois