Recent content by sassy

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    CK Levels and ALS Progression

    My husband is also on Radicava
  2. S

    CK Levels and ALS Progression

    My husband's ck levels are usually around 900 and he has very slow progression....
  3. S

    Advice on Supplemental Medicare Insurance

    Jim, you did a fantastic job explaining the Medicare options. Thank you!
  4. S

    Trouble getting radicava

    My husband has been on Radicava for more than 2 years and the home care nurses have been great. No issues with accessing the port.
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    Could this be ALS/MND?

    Adding to Tillie's post regarding weakness. My husband felt fine but kept tripping . Our daughter worked in an ALS academic lab and when I told her I thought her dad had foot drop she asked him to tap his foot. Much to our surprise he couldn't do it. That started the process to diagnosis.
  6. S

    Brian’s wife

    Very sorry for your loss.
  7. S

    Radicava

    My husband also had a port inserted after his first infusion. He has not had any side effects and I've done his transfusions for three years. We also don't know if it's the Radicava which has enabled him to progress slowly or if it's his variant. The port is in his chest and a nurse comes to...
  8. S

    Maintaining the weight is also an issue for us. My husband has to eat thousands of calories a day.

    Maintaining the weight is also an issue for us. My husband has to eat thousands of calories a day.
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    Hi! Yes, my husband's progression is super slow. His left leg continues to be his only area of...

    Hi! Yes, my husband's progression is super slow. His left leg continues to be his only area of weakness. He uses an AFO brace to walk safely and has lost a lot of muscle mass in his thighs but can still golf. He was diagnosed about 4 years ago and is a patient at Mass General. We will...
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    Need help dealing with Insurance

    I worked in medical insurance for many years. In order to go forward- you need to know exactly why Blue Cross is not processing the claim. Was it denied for lack of information or the diagnosis on file? If information- what specifically are they requesting from your dr? Sassy
  11. S

    Hey guys.

    Nice to hear from you Nina. Always remember what a wonderful daughter you were to your mother.
  12. S

    Gaining weight with als?

    My husband also has slow progression and has to eat about 4500 calories to maintain weight. I asked his neurologist about food and inflammation and she said (if I understood correctly) the inflammation they talk about in ALS is not the same inflammation you get from eating unhealthy foods.
  13. S

    Progression

    Mon, his weakness remains in his legs. He has lost a lot of muscle mass in his legs but remains totally mobile. He had a third emg last month at Mass General and his arms and chest remain unaffected. He began radicava infusions two months after diagnosis, like many patients, we are unsure if...
  14. S

    Progression

    My husband has the flail leg variant of als. His disease started as drop foot in his right leg and has progressed to his left leg. However, he only uses an afo on his right leg. Thankfully, his progression has been extremely slow. He was diagnosed three years ago after falling a number of...
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    Larrys passing

    I'm sorry for your loss. May you find peace and comfort in the days ahead.
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