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Leg edema

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    Leg edema

    Hi everyone. I am very relieved I asked Ellie about Fritz’s treatment from Hospice yesterday. They just started helping us 2 days ago. The nurse checked his labored breathing and ordered oxygen for him to be more comfortable. I told Ellie and she immediately told me oxygen is very bad for people w MND. I read that just before she told me while researching myself. The medical community here in Wisconsin do not know cases of Progressive muscular atrophy. Ellie said it may shorten his life to use oxygen . Now of course I want to make sure the ladies (furosemide) is safe. He has taken 3 pills to reduce swelling in his legs. His calves and toes are extremely swollen . We keep them elevated but it doesn’t help. Any suggestions? And God bless Ellie.

    Lasiks not ladies


      I knew this about oxygen because of the bracelet supplied with the mnd pack as a warning to medical services. Thing is the bracelet is too small as I think my daughter asked for the pack. Sorry I don't know much about swollen legs but I believe it's to relieve pressure by not standing but I guess he doesn't do that anyway.
      when i can think of something profound i will update this.


        Hi elevation (when I can) and massage work for the oedema I get in my left leg


        Diagnosed 05/2017 Familial ALS Limb onset


          Betty, re furosemide: that's a medical question way beyond my pay grade, I'm afraid - you could ask Fritz's Neurologist.

          If he takes it because of heart failure, that could complicate his breathing issues.

          As others have said, raising the legs helps oedema, as does gentle massage (in the direction of his heart)

          You're doing a great job Betty, I wish you had more local support...

          Look after yourself too.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


            Betty, I have had swollen feet and ankles recently. My MND Physio came out and showed me and my husband how to move the retained water down my feet to ankles and then ankles to behind my knees where it drains. She said that it’s important to keep the two creases at my ankles because once they’ve gone it’s trouble. I do peddling on a small motorised thing too which helps a lot and have been putting my legs up in my rise and recliner chair with cushions under my legs to get them higher. It’s all helpful. Good luck with sorting this out yourself. Love Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.