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Has anyone been getting Neurofilament Light Chain blood tests? I just had my 3rd one and am wondering how they use this as a biomarker. I understand that with ALS the readings will be higher and out of the normal range. Mine have fluctuated up and down. My latest one is lower than the initial...

I received my hospital bed. I was able to get a full electric one. I also got a gel overlay for it. My problem is that I'm short and the overlay makes the bed to high for me. I have to sit on the edge and my husband puts a stepstool so I can push myself back onto the bed. I had purchased a...

Has anyone been getting the 2 medications in the prime c trial through a compounding pharmacy. Before Relyvrio was approved if you chose to pay out of pocket you could have it made by a compounding pharmacy. Was wondering if this was a possibility being both drugs used in the study are approved...

I am currently starting to research hospital beds. Currently I have a king very high select comfort bed that I have to use a 2 step stepstool to get in and out of. I know that at some point that I won't be able to do this safely. At present I have my husband stand behind me while I get up and...

I am starting to feel uncomfortable in bed. I can still turn myself over although it is becoming harder. I currently do not have a hospital bed but have a select comfort bed. I have been looking at an alternating pressure pad and was wondering if anyone uses one that doesn't use a hospital bed...

I had my peg changed out for a mic-key button yesterday. After reading the instruction pamphlet that came with it, I wasn't aware that you had to do a weekly check on the water that's in the balloon that holds it in place. I had asked someone that has had one for over 2 years and they said that...

Has anyone had their peg replaced with a Mickey button. What is the procedure? Is it another out patient procedure? Pros and cons of one type versus the other. I currently have a tube hanging outside my stomach and am considering having mine changed to the button.

It's with great sadness and a broken heart that my dear friend Cathy(aka blitzc) has earned her wings and is flying free. RIP my friend. Here is the link to her obituary https://www.gotschallfuneralhome.com/obituary/cathy-blitz

Has anyone with a peg been told that they can no longer swim in a pool? I went to the surgeon for a follow up on the Peg I had placed in April. I asked him to trim the tube because it was too long to cover with the tegaderm film before I go in the pool. His response was no swimming or using the...

Is anyone else experiencing a nightmare transitioning to Radicava ORS from infusions? I am having a problem with paperwork. Right now I receive the medication through an infusion center. Medicare A + B pick up most of the cost my secondary insurance picks up the remaining cost. Now to transfer...