STS-135

[STS-135 @STS135Atlantis]

@EPotterMD @mcuban This is how I finally received my IVIG treatments. After nine months of denials from insurance, I reached out to benefits department at my company and explained my case to them. 10 days later my denial flipped to an approval and I received my first infusion this week.

[STS-135 @STS135Atlantis]

I went almost fully blind for a few days. Ophthalmologist said it was optic neuritis and sent me to a retina specialist who confidently told me there was no was it neuritis and sent me to a neurologist. Neurologist very confidently told me not a chance that’s what it was and I was just having headaches. Headaches that somehow made me lose my vision? My wife showed him a bloodwork order from the ophthalmologist and asked if there was any further testing he could think of. He finally agreed to send me with an antibody test that revealed I had MOG antibody disease, which often manifests itself initially as optic neuritis. Without my wife’s persistence I would have left his office still having no idea what was wrong.

[STS-135 @STS135Atlantis]

@OncleAdik I don’t think of Russia as a terrible country. Russia is a fascinating nation. Honestly I have not enjoyed the new international style on here too much. It’s mainly just a lot anti-American slop but I’ve liked seeing the Russian posters.

[STS-135 @STS135Atlantis]

@DocAtCDI I feel like the words “no cheese” falls on deaf ears everywhere. I certainly get plenty of strange looks for saying it.

[STS-135 @STS135Atlantis]

@80sThen80sNow Transformers were by far the biggest franchise for in the 80s. Nothing else came close and even now I still love the brand. Brilliance is absolutely correct.

[STS-135 @STS135Atlantis]

@Papa_Heme @UHC Off-label approval seems to be a near impossible task. Even the IRO companies won’t budge on this or consider strong evidence.

[STS-135 @STS135Atlantis]

@Boriss1304 I understand. Most everything I post goes unseen.

[STS-135 @STS135Atlantis]

@tendernessk_ It’s really cool to see Russian posts now. I’ve had a long fascination with Russia and have had the privilege to meet some very nice Russian people over the years. Here in Texas, one of the most beloved hockey players of all time is Sergei Zubov.

[STS-135 @STS135Atlantis]

@ponaehala Hello from Texas!

[STS-135 @STS135Atlantis]

@Matt_Pinner @jameslabrie 🤘

[STS-135 @STS135Atlantis]

@propublica Something has got to give. Americans pay obscene amounts of money to these insurance companies only to be denied over and over. We can’t go on doing this.

[STS-135 @STS135Atlantis]

@WineFlair @Aetna @pissedconsumer @ohio_of94647 @MedicareGov @AetnaHelp @Aetna don’t give a damn about anything but their profits. I’ve posted many times on here about my struggle to get treatments covered. They never listed to anything my doctor told them over the past eight months. Just deny deny deny and keep the money rolling in.

[STS-135 @STS135Atlantis]

@ronrule And I’ve had servers in lower priced restaurants work circles around some higher end ones. To me, the guy doing the better job deserved the better tip.

[STS-135 @STS135Atlantis]

Until I was diagnosed with MOGAD last year and begin a months-long fruitless and frustrating battle with @Aetna trying to get treatments, I had no idea how bad things were with insurance. It’s been frustrating for my neurologist too and I’m thankful for all the hard work and effort he and his staff and put only this fight. Just wish we would’ve broken through Aetna’s defenses.

[STS-135 @STS135Atlantis]

@TexMexFrank Heck yeah! The charro beans that come with the chips and salsa at Lupe Tortilla are so good.

[STS-135 @STS135Atlantis]

Another rant to myself. I have a rare autoimmune disease. Rare enough that none of the current treatment options are FDA-approved. Even so, IVIG is often considered to be highly effective at preventing flare ups and reducing further damage to the optic nerves. My doctors have spent a great deal of time filing prior authorization requests and appeals since August to get me started on treatments. But these ultimately are off-label use and as a result of this, my insurance company, @Aetna, refuses to cover them. I just wonder what they want me to do? My diagnosis and symptoms are very real and have a daily effect on my life. Additional damage could leave me disabled. It’s so frustrating being stuck in this limbo knowing there are treatments that can help, but I can’t get access to them because of my insurance company. I have insurance just for situations like these, and they coldly rubber stamp denial after denial despite the immense amount of paperwork my docs have submitted to them. The manufacturers of these medicines sometimes offer financial assistance, but again, not for those of us in the off-label boat. This is a terrible system.

[STS-135 @STS135Atlantis]

@Stormi_luv Diet Dr Pepper

[STS-135 @STS135Atlantis]

@EPotterMD @nytopinion My issue is that my doctors have exhausted appeals in four PA requests. We’re asking for these treatments because I need them. But @aetna refuses to listen to what my docs have told them. Eight months of denials and I’m still dealing with my symptoms. What more can I do?