Why is it never easy?

This may be a long post, and for that I apologize. Facts:

1: Diagnosed in December, 2012, by neurologist specializing in MS

2: Started Tysabri January, 2013, receiving injections in said neurologist's infusion center

3: Moved 250 miles away in June 2014

4: As, MRIs continue to remain stable, opted to continue to see said neurologist every 6 months, while getting infusions every month in new town of residence

5: Only one infusion center anywhere near new town of residence is certified to infuse Tysabri. This infusion center is affiliated with a certain hospital megaplex here, and can only accept patients who have a prescribing doctor who is also affiliated with that hospital

6. Found a doctor affiliated with said hospital, who, after conferring with my neurologist (250 miles away) agreed to act as my prescribing doctor, so I could continue to get my infusions

7. For a year, continued to get infusions regularly.

8. Turned 65, went on Medicare, all insurance changed

9. 3 months before that, I began notifying all doctors and Tysabri manufacturer that this was happening, so that there would be a smooth transition

10. The month I went on Medicare, the infusion center notified me they had not received the Tysabri yet, so They were canceling my appointment

11. After a zillion phone calls to Biogen, my local doctor, my neurologist...I finally got an infusion...a month late

12. Two months later (today) I got a call from the pharmacy dispensing my Tysabri that my prior authorization had been withdrawn, because my prescribing physician had withdrawn it. What?!?! I'm sure it's some kind of snafu between my having a local physician, my neuro beiing out of the hospital network, and the insurance company. Arghghgh! And with tomorrow being a holiday, I'll have to wait til Tuesday to start the phone calls ....again. Rant over...thanks for listening.

22 Replies

  • Wow, so sorry to hear that Texandyroe !

  • I am so sorry that this is happening, I will never understand your American ways of medical care and insurance. They certainly mess with people's lives. I hope that you get it sorted out. What holiday are you celebrating tomorrow? Blessings Jimeka 🤗

  • jimeka , I don't think ANYONE understands our American ways of medical care and insurance! I think their whole purpose is to mess with our lives! As far as the holiday tomorrow- it's Columbus Day, but I'd be willing to wager that nine out of ten people asked will say they have no idea what the holiday is, but they are just happy to be out of work or school for the day.

  • I googled it and it said October 12th 1492, you would think that they would celebrate it on the same day every year. It's like Easter, I can't see why it's not a definite date like Christmas Day is. Anyway you enjoy whatever you are doing, and I hope come Tuesday you are sorted, blessings Jimeka 🦋 💐

  • jimeka Some holidays are celebrated on the nearest Monday, so people can have a long weekend.

  • Thank you.

  • Texandyroe And I thought that medicare would be easier. So sorry.

  • Columbus Day is a government/banking holiday, but a lot of businesses are open so you may want to check in case. Sorry you're dealing with this hassle and hope all is resolved soon!

  • That’s right dianekjs you might want to call your doctor they may be open I remember I didn’t call my doctor on a holiday and they were open just saying.

    Oh Columbus Day is when he landed in Plymouth, Massachusetts and landed on Plymouth Rock guess where I live in Massachusetts.

    But again some places are open back in the day all stores wherever closed no more.

  • ssdw1958 actually Columbus never set foot in North America. It was the Pilgrims who landed on Plymouth Rock.

  • In our area Columbus Day is really ignored. School is still held. Life goes on. Lots of states and cities have changed to celebrating indigenous people day instead, which is also ignored! 😁

  • StacyHayward , we live in Deep South Texas, where the indigenous people here are the Mexicans that were here before we took their land. Surprisingly, the school's are out here - though when I asked my kindergarten grandchild what the holiday was, she looked at me blankly. ”I dunno, grandma, it's just a holiday! Yay, no school". 😖

  • Here in Michigan, the kids have school today. Just no government buildings are open, secretary of state (dmv), banks, ss office, etc.


  • Check with your DR's office, mine which is a BIG place is open. Mother is on Medicare and having multiple issues so I "get it". Prayers!

  • Thanks for understanding - what a nuisance Medicare is. I called my doctor's office - closed. Oh well, I'll get this straightened out eventually. Blessings, Sandy

  • I changed insurances last December. Total mess with the Tysabri. Everyone involved says they want to help you but there sure were a lot of people dropping the ball. Good luck! I hope it's resolved soon!

  • I know some people celebrate Columbus Day and some people don’t that’s up to them. I do know that when I was working in the school system teacher I was with did let the children know who Christopher Columbus was. It is sad that being an American and some people don’t even know who he is. That’s all I have to say everybody have a good day.

  • You know what it’s ok that the pilgrims step on the rock first but remember who the captain of the ship was. Ok I had to do that I am not like that LOL

    I am like that I like giving people a hard time. When I first start working with my last person I was working I told her that I am that type of person who gives people a hard time. But not mean about it, it was kind of cool because she would do the same thing.

  • Sickening ☹️

  • WOW!!! I am very sorry to hear this!!

  • Texandyroe, it's Fancy1959. To answer your question it has been my experience that easy is reserved for people who don't need it and who don't deserve it. 😩😬 The rest of us poor schmucks who really need Insurance companies to follow up and do what they have promised to do and or the hospitals to do the same are caught in that thousand call trap because for us it never goes as planned and certainly isn't easy! I just spent over 6 months fighting with my insurance company over a hospital bill that was slightly over $8,000. I didn't owe but a small portion of it and I refused to pay for the total bil. The insurance company kept denying the bill saying I wasn't a member at the time. Haha, they like to take our money then they conveniently forget when we pay our premiums!😲

    So keep your chin up and keep fighting. I don't call us MS Warriors for nothing! I hate to hear of all your troubles but we are always here for you too vent your frustrations on. It's one of the things we do best and that is to listen. Please keep us informed and let us know how your journey continues. Always remember you are never alone on this winding path that MS leads us down. You are now part of our extended family and you have lots of people who understand what you're going through and who will give you support all along your journey. I wish I were closer so I could be there to give you the support you need in person. It helped me so much to know I had brothers and sisters fighting the exact same fight I was fighting. I hope now that you have found your family here it helps you as well. Take care until we speak again. Fancy

  • Thank you so much for those kind words, Fancy1959 . I do find great comfort in this group, and realizing that I have a wonderful extended family, all of them totally "get it". Sorry to hear about your battle over the hospital bill. I did finally get my situation worked out and got my infusion yesterday, but I know the battle's not over. The teacher's retirement system, wich provides my insurance, is changing carriers in January....they PROMISE it will all be seamless, but we shall see.



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