Fatigued and Frustrated

Good Friday morning, my MS friends. Just need a moment to vent, and y'all, being the only ones who will understand, are sadly going to have to be the recipients of my venting.

In July, I turned 65, which meant I went on Medicare (kicking and screaming), which meant new insurance. Which caused a nearly 4 week delay in my monthly infusion of Tysabri. I never did "perk up" after the infusion that I finally got, and was looking forward to the next one, which would hopefully refill my tank to the level I was used to.

I was scheduled for that infusion today. Yesterday, I get a call from the infusion center...they have not received the medication, so "don't come in". "We'll schedule it when it comes in".

So I call ExpressScripts, who is supposed to dispense the Med....get an automated reply that they are experiencing an unusual amount of calls so call back later. I call my case manager with Biogen who says she will look into it, but she bets the delay is being caused by Harvey.

In the meantime, I wait...and feel myself fading...

Ok, rant over....you may hear from me again in January, when my insurance is changing over to some new provider and I'm sure I'll go through this again.

But I remind myself that I am blessed to have insurance and to live in a country that can provide the medical help I need. I have nothing to complain about

May you all have a blessed weekend

19 Replies

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  • Vent away, it must be so frustrating. I don't expect changes in my healthcare since I use the VA system. However it also means I don't have much choice in doctors and neurologists. My neurologist has a very narrow idea of what is an MS symptom so a lot of mine like the cognitive ones are being ignored. Ok I'm done venting too.

  • @melack01

    I hear you too. I've have a very seasoned MS neurologist yet she doesn't recognize the cognitive issues either. Ugh.

    I have been to many docs, some better than others to be sure, but no one seems to have it all together. It is frustrating.

  • I'm thinking of asking doc to increase my modafinil from 100mg to 300mg. It helps me, but effectiveness fades before next dose.

  • I hear ya, ive gotten the honey go home put your feet up and eat chocolate...oh really I love feeling this way?sheesh.....I'm venting for you!

  • My hubby uses VA also and has a great group of docs. VA GP doc is within 20 miles, specialist for Eyecare is 90 miles away, but is awesome. She's at Palo Alto VA and also teaches at Stanford University. Hubby has serious glaucoma eye issues and just had 3rd eye surgery this week. Trying to save vision in right eye.

  • @texandyroe

    Yes, vent away! We hear you! 🤗

  • Oh, I feel your pain! At the beginning of the year when my insurance changed I went for weeks without my Aubagio, which I take daily. Had a horrible relapse which only a steroid infusion could help with. All I can tell you is to keep being the "squeaky wheel" so you can get "greased". Call and bug them daily if you have to. Advocate for yourself! Good luck!

  • oh like that squaky wheel gets oiled...YES!

  • Yeah - my squeaky wheel usually falls off before it gets oiled. Lol

  • Hope you feel better after venting 😀

  • Thanks, Royjr. I do feel better, emotionally, and have come to realize that my issues are so minuscule compared to other's. This, too, shall pass, as they say 😜

  • I feel for you! I have a Neurologist who's staff is either lazy, overworked or not competent. I actually think it is a combination of all three. I had to be a total wench to get them to understand that Ocevrus is the drug for me. Well there is no infusion center in ****, the second largest city in the state. Finally they said we will get the ball rolling to start the Ocevrus and they haven't. I have asked for four weeks to just give me a call to tell me the progress and nothing. I am going to send a certified letter to my Neurologist, the hospital he works out of, and to Ocevrus.

    In the mean time does everybody remember Provigil before the FDA said it was never studied for MS but worked wonders for us. Well I can fill my prescription at Walgreens for $1,200.00 a month. Yeah right! I have found a Canadian pharmacy called Blink Health. If you have a prescription you can give it to Wal-Mart or CVS and a few others. You pay Blink on line and bring the receipt to one of these major pharmacies and you can pick it up there! My cost with a $30.00 first time coupon is $95.00. I am so incredibly excited to go pick it up tonight.

    I will finally have just a little extra energy to help me get through those days of exhaustion. Just the thought of this being available has given me a skip in my step. Ok a skip in my walker step.

  • Modafinil is the generic form of Provigil. Maybe you could get it for lesser price. I love that stuff!

  • @SometimesCrazy

    Kudos to you for sticking with it. Your tenacity will pay off in the end I'm sure. Still I'm sorry it's been such a struggle. I'm excited for you about the Modafinil. Hopefully, the Ocrevus will soon follow. Rooting for ya!! 😀 You go girl!!

  • Oh many of us have felt the no med all of a sudden I'm not the same stable what I could be and not at fault.Sometimes I have dfound if my doc can put me on medicine to help relieve withholding symptoms it helps with the pressure.It sure does stink feeling unknown sources are treating us like puppets.Each jan I feel the same way and benefits keep getting cut.Im wondering if there isn't an emergency plan put into place for companies that know these things happen.I am so sorry you are in this situation, I pray that you have people around you that understand and help you be as comfortable as one can be.What would an ER room do if you ended up there?Would they have the med?

  • Nope, jackiesj , I seriously doubt the ER would have the meds. I live in a little town in south Texas, which...after a lot of wheel squeaking by another MS patient - got their staff at the infusion center at the hospital here trained and certified to infuse my Med - Tysabri. I feel like I have to retrain everybody associated with that hospital (not the infusion staff) about what Tysabri is and why I am getting it. I did this to myself, though, so I can't complain. Everything was going swimmingly when I lived in San Antonio, where my neurologist (an MS specialist) treats me and has her own infusion center attached to her office. The staff there understand everything related to MS, and stay on top of getting the mess in They infuse dozens of MS patients a week. However, I decided to move down here to be closer to my family. For the first year, I continued to drive the 5 hours each way to see my neuro every 6 months, and get my infusion every 4 weeks. But after a year of that, the drive was really wearing on me, so I started going to this infusion center here. Still see my doc every 6 months, because there's no MS specialist here and the first time I walked into a neurology center down here to see if I might want to start going here, I about freaked. I was the only MS patient there...the rest were stroke and TBI patients.

    I agree that it totally stinks that othrr people are controlling what we can and cannot get and when we can get it.

  • Okay to vent anytime, sure hope you get your meds soon. I would vent too. Having been a super organized person in the past, I would of thought the med company should of anticipated patient needs and sent out early. They had plenty of warning about Harvey. About Medicare, maybe it's changed their format, but I've never had a problem. I also get a great supplement med/Rx coverage through AARP, United Healthcare & Humana for RX.

  • I understand about Medicare. When I was switched to it my copay went from 0 to almost 2100.00 the first month. I told shared solutions I couldn't do that. It took about a month and a million phone calls and a bunch of forms to fill out to get assistance. Then a couple of months ago they said I had reached my limit and I couldn't afford the 297.00 a month so again I started calling every number I was given. No funding available. After about a week without my medication they called with a new assistance program and more paperwork but they did approve me until they get the paperwork approved. So that time I was only off my Copaxone for 1 week. Now my doc is going to change my medication and it will start all over. Novartis has been working with me on assistance already so I hope that all goes smoothly. That is my vent. Just keep praying and things will work ou.

  • Wow! I am so sorry cljones ! For those of us who are supposed to stay stress free, staying on our meds doesn't make it easy sometimes. So sorry for all you're going through Hang in there!

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