Recent content by sassy

Very sorry about your Mom.

Beautiful picture- such a sweet man. Blessings to you and your family. s

Thinking of you and your family.

So very sorry for your loss. I could feel the love in your posts. Wishing you peace and strength.

My husband has been a patient at Mass General's AlS clinic for 5 year. They have been wonderful partners in his healthcare. I'm sorry you have to deal with so much. You certainly do not need it.

Yes, that's exactly what happened to my husband. Then a few weeks later it was approved- we believe his neurologist appealed their decision.

So sad...

Seems like a lot of additional stress for both of you. Maybe another site would be a better fit. My husband has been a patient at Mass General for 4 years and we have been treated extremely well. I hope the same for you and your husband in the future.

Thank you for sharing.

Nikki- Commercial (my employer) insurance not Medicare is my husband's primary carrier. They paid for the sodium phenylbutyrate for one year then denied the rx and we are still waiting for oral radicava approval.

I'm trying to understand why the appeals are necessary if it's supposedly the same drug, cheaper and easier to take. Makes me wonder if they are going to stop paying for the drug period. My husband has been on the iv for over three years and hasn't gotten approval . Maybe I'm just...

My husband has also been receiving infusions for years. We are awaiting a reply to the oral request. Just seems very odd that you would be denied the oral drug which placates the transfusions which you were approved for.

Sorry to hear. What explanation did they give you for the denial?

Thank you for sharing.