So it seems I’m batting a big fat zero today. I logged in to find my SSDi was denied but I have to wait for my letter in the mail to see why. Then after almost three months my Blue Cross insurance upheld my previous denials for Ocrevus. They claim Ocrevus is experimental and refuse to cover it!
The light at the end of the tunnel is that it sounds like Genetech may cover the cost of Ocrevus but now my neuro wants me to apply for grants to cover the costs of the infusion center. I’ve called around to try to find out how much that could cost but no one seems to be able to tell me. How can I apply for grants/assistance when I don’t know how much I may need? I’ve never asked for help like this and I hate it! I pay so much for insurance and they shouldn’t get off from paying! I’m so mad and frustrated and tired of fighting for everything.
Lucky, so sorry to hear this sad, bad news, no worries, this too shall pass❤👍💜💚💙Keep ur chin up. Do you have a lawyer? & is this your first application with them? They usually deny the 1st for some reason, I was denied on my very 1st application 8 yrs. Ago, then I got my Hubby/caregiver, my mental health provider & my neuro. Write letters for me, & kept up with my examiner, Praise YAH she was sympathetic. & I failed their Pysche-test horribly. I was tired, had to travel far for it& in bad pain!😱😱 Just wait for your letter, it will have the appeal before an ALJ judge, & you can appeal this, have your Neuro. Write a letter, & u can get an Appeal lawyer, they'll only take 25% of your backpay, if you win your appeal, also, get Nolo's guide to getting & Keeping your Social Security book on Amazon, which totally helped me. Many Prayers🙏🙏🙏, Much Loves💚💙❤💛💛😘😍& Many Blessings to you.---Jazmine💜🌹Rose
Yes, this was my first try at SSDi. I was really hoping to be in that small percentage that gets it the first time. I plan on getting an attorney for the appeal so hopefully that’ll help my chances as well. Thanks for the encouragement! ❤️
Oh & about the Occrivus, not fair on the insurance company!!!😠 i think, gentech will pay for its assistance, & your neuro. Is helping for the grant, keep a good healthy diet, veggies, fruits & D3 Vitamin, B.A.C.K.Vits. you'll be o.k.👌😻Blessings---Jazmine
The neuro gave me a list of organizations to call and ask assistance from but I guess Indont want to call until I know what I’m asking for, or more importantly how much. I have a call into Gentech so maybe they can guide me. Surely I’m not the first person to be going through this insurance nightmare-unfortunately.
Admittedly I need to do better and be more consistent with the vitamins. On top of that I haven’t been sleeping well because my brain won’t stop thinking about all of this.
I have no insurance right now until open enrollment, Genentech paid for my last two Rituxan infusions and my Neurologist had it done in the infusion center in her office. I've been waiting to get approved for disability since March 30, 2016. It's tough but hang in there. I have faith. ❤🌷
Thank you! I always used to be so positive but I have to remind myself that things could be worse...way worse. I’m sorry you’re having to wait so long for disability—that’s crazy! Fingers crossed that it comes through for you soon. 💐
Thank you! I feel a little better this morning. I stumbled upon a TV show last night and the host was interviewing Montel Williams about his MS. He said some things that seemed to click with me and gave me a little attitude boost. Funny how people come along when you need them 😊
Thanks everyone for the kind words and support!! ❤️
I saw that show your right it is nice how something like that happens. Or when you see something and say well I’m not that bad. Definitely know what you mean.
Even though I need to do a much better job at eating better, I truly think it helps. When I stay the course and eat healthier- my symptoms seem better. I know people who are very strict with their diet, and they have done very well. Just a thought...
I agree. I’m mainly vegetarian but will eat the occasional piece of salmon or other fish. I avoid most dairy and use only almond milk. I think that helped me a lot in my early years of MS in particular. I’m researching foods to avoid as much as the beneficial ones. One thing I have to be more consistent on is my vitamins!! Always room for improvements...
So I talked to the Powers at Be 😀 and this is what I got " The Client Services team says, their recommendation is to try contacting the patient assistance program with the drug company. The information: Genentech Access Solutions, (844) 627-3887.
You need a lawyer. I went to one to make sure that the timing was perfect on submitting the request. SSI is very picky about that. They will usually get 25% of the first payment.
That may seem high, but when my lawyer got my approval on the first try,
I agree and wish I would’ve just gone with the lawyer for my original application. It sounds like the appeal process can be over a year here in Pa. Leason learned...😏
I'm sorry for all that you are going through Hidden When I first started the application process, my family told me to get a lawyer so I reached out to one and they told me I needed to apply on my own and then get denied before they would take my case. Not sure if that is every lawyer. So I went ahead and applied on my own and was awarded on the first try. So I don't know if it's across the board that you have to try to apply on your own first.
Good luck on your journey, we are all here for you, so vent away.
I'm in the same spot right now. I talked to a lawyer who said he didn't think I would need him. Well I was denied on my first application and now he's helping me with my appeal. I'm going for a psych evaluation on the 24th that they(social security)requested. I already paid $600 for a residual functional capacity evaluation done by a physical therapist. I tested at less than sedentary. Im trying not to worry too much because i am disabeled after all and they will have no choice but to approve me when they review all the results. The psych eval is at four in the afternoon which is good because I'm so fatigued by then my cognitive function is usually wonky. It's just so sad to keep hearing about denials for so many of us. It is sooo hard to "give up" and call uncle that it is such a slap in the face to be denied. Not to mention the toll that the stress of waiting to be approved takes on our already weak conditions! I may be holding on by my fingernails but I'm holding on!
Keep holding on! You’re right about how frustrating it is and the hoops that they put us through to get the disability. Do they not understand that we would gladly switch our lives to be “normal” and be able to work? Ugh
Try to get some rest and I’m here if you need to vent. Please keep me posted on how things go for you. You’ll be in my thoughts and prayers.
From what I was told by my lawyer, the timing of the application is critical. If you put it in too soon, automatic denial!
It’s my belief that they will approve the benefit, they just can’t seem to get past the bureaucratic BS that they are so mired in. I wish everyone the best in this. Life is hard enough without adding more stress about SSDI. BTW, I was also told that MS folks always get approved.
I hope it gets approved the next go around! I probably waited too long because I was out of work for over a year before I applied. Nothing I can do about that now but at least I can still get a lawyer for the appeal. Thanks for the reply!
Luckymomx2, it's Fancy1959. The disappointment and upset I know is hard to deal with but you're experiencing the a typical response Social Security gives most people who apply. I went through the exact same thing you did. After the second refusal I hired a lawyer and got before an administrative judge to hear my case. The lawyer did nothing more than act pompous as most lawyers do. I knew the information better than he did and I brought up pertinent information that he missed. But I had to spend the money and get the lawyer to go with me in order for the judge to take me seriously. It's all a big scheme and racket in my estimation to get the most money out of us before they give us our puny Social Security benefits. So hang in there. Do not miss any deadlines to file an appeal or they'll make you start all over and it's a mess. I don't understand why the people who are truly disabled, like MS patients, have the hardest time receiving Social Security Disability Benefits. Fancy.😲😬😕
I should be getting my letter today or tomorrow with their reasons for my denial. As soon as I read over that I will start my appeal. I agree that it seems to be hardest for people with MS. I had a neighbor a few years ago that was on disability for his back yet he was always working around outside and moved better than me! 🙄
It's not right and not fair for you (and many others) to have such a hard time getting access to care. But don't give up. There's a lot of good people and organizations doing their best to help. Keep at it, you'll get it!
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Results 😪😭
God does work MIRICALS 
Finally got my appoint for Ocrevus Infusion!
Blood Test & Ocrevus B-cell repopulation & Covid immunity 
