Post MRI Update / 2nd Opinion / Tecfidera Saga

[cubbiesfan918]

Hey Everyone!

Okay, this is an update to my MRI Report / 2nd Opinion / and trek to find a new DMD.....Where to I begin....

We will start with the 2nd Opinion. Somehow, my former Neuro found out I was going to see his former colleague for a 2nd opinion. He did not take the news with as much professionalism as I would have hoped. He advised that if I wanted a 2nd opinion, he could refer me to someone. However, if I chose the Neuro I went to see, that he suggested I move my care to her immediately. So I was fired. I went on to say I had no intention of creating such animosity and I was essentially obtaining the 2nd opinion he strongly suggested when I was diagnosed. I also stated that by advising who I was allowed to obtain the 2nd from greatly compromised the integrity of getting a 2nd to begin with............

So, my new Neuro is delightful. She had a plethora of good information for me and has advised that I only had 1 small active lesion on the right side of my brain. All the other lesions were older and did not see any black holes. Yay! It was good news that I needed to hear after the drama that had unfolded with my previous Neuro. She suggested I begin taking Vitamin D immediately and also some probiotics to help ease the possible GI issues with Tecfidera.

And of course, what is good news without a minor bump in the road............

Upon my neuro submitting my Rx for Tecfidera, I received a denial of benefits from my insurer. Their guidelines state that before TEC can be covered a patient must show failure with an injectable (check) and Gilenya. The G side effects are frightening (no offense to current G users) and there was no way I was going to subject myself to them. I composed a Grievance letter. Results are TBD by 8th of October.

Since I have seen many references to MS Active Source and their financial assistance programs, I am here to state that they were wonderful! I qualified for 3 months free TEC and they will review again in another 3 months as they approve per quarter. My Neuro stated that they will cover up to a year and by then, my insurance company should come around. Our hopes are that my next MRI shows improvement and she can compose a grievance letter on my behalf stating how beneficial it has been. I truly hope that is the case in a year.

I hope you are all doing well and I thank you for your friendships and caring. They truly mean the world to me!

Best Wishes,
Lizzie

[cubbiesfan918]

Thanks for your sweet words Corrie! I really hope all goes well with TEC and I will tell my Hubs tonight what you said. I actually couldn't agree more :)

Have you seen Cann around? I don't think I've seen her on here or FB. But I think I've been lurking more here than there............is she hiding under a Canadian rock?? Is she OK? Please advise.

I'm glad all is going better with you at work. I constantly catch myself transposing numbers. Boo.

Hope you are doing well sweet friend!
L

[Corriel]

Wow, what a day! Ditto for all above comments and hooray for you for having to deal with that arrogant, unprofessional person. He is not worthy of his profession and you are definitely in better hands with your current selection.

I wish you the best with your new DMD and dear hubby owes you a treat for all you have gone through lately.

I am so proud of you for sticking to your guns and putting yourself first!

Hugs,
Corrie

P.S. The kiddies and I survived! :-)

[cubbiesfan918]

TLC - The insurance company is getting my response quickly because their board meeting is the day before. The company is also locally owned by 2 of our hospitals, so I've been able to email my Grievance counselor on and on for several days :) She's keeping her fingers crossed that I get the approval, but if not, I will resume my MSActiveSource for funding for the next year. I will cross any other bridges as they may come. Thank you for mentioning the babes, she's the best thing ever to happen to me. Well, her and my husband :) I expect some follow up on the comments I posted on your pics. FYI.

Kyle - I try to deal with people in a professional demeanor and expect the same, all of the time. Neuro 2 left Neuro 1's practice for bigger and better things, his attitude had nothing to do with me but I had no problems letting him know I wasn't going to be bossed around like that.

Hi CaringCanuck - I am so glad that Gilenya is working for you and in no way wanted to offend anyone that is currently taking it with my post. It simply is something that I did not want to consider for myself. But always respect the decisions of others. I truly hope it is working out for you.

Thank you all for the positive feedback!
Lizzie

[caringcanuck]

Hi,  I've not been on for quite a few weeks but just thought I'd throw my 2 cents in and say that after much deliberation as to what DMD to go on I chose Gilenya.  I am in my fourth week of taking it and have had absolutely zero side effects and Novartis' support program has been fantastic as far as nurse follow up, covering the uncovered costs (it gets delivered to my door and costs me nothing - not even a dispensing fee or a delivery charge).   Just thought I would let you know that, for me at least, Gilenya seems to be working out really well.  Take care, Jil

[kwarendorf]

Sounds like things are moving in the right direction! Good for you for standing up to your former neurologist. It's vital that WE are aware that we are responsible for our own health and well being. Doctors who do not like being challenged should be dismissed!

Kyle

[TLC_31]

Thank you for your update, and thank you in advance (TIA) for future updates!

As for the old neuro, I’m sorry you had to go through some uncomfortable moments dealing with him, but that’s all over now. Why he reacted like he did certainly has nothing to do with you. It will forever be an unsolved mystery, but he didn’t leave you with any lasting damage, so forget about him.

I’ve heard of insurance not covering the oral drugs unless the injectibles have been tried, but it seems strange that Gilenya would be a prerequisite for Tecfidera. I’m impressed that the insurance company will have a response for you in less than a week. Even if the response is not in your favor, MS Active Source, your wonderful new neurologist, I and others here are all on your side. All you have to do is take your Vitamin D, eat your yogurt, then take your Tecfidera and go play with your daughter. Life is good!

[cubbiesfan918]

Laura - See why I call you my expert. Your opinion is invaluable to me and approving of my new Neuro means the world to me :) Thank you for your insight and care!

Immi- Your opinion also means the world to me and I appreciate your kind words. Though, I must say I am just fighting the good fight like the rest of us and taking charge before it takes charge of me :) I love this site and the connections I've made even though I'm sorry we are all here. Thank you for your kind words and enthusiasm!

Dan - I've thought of sending bad reviews to everyone and even contacted my insurer when he fired me. I'm grateful our words were exchanged via email and not in person. I'm not sure I could have responded so professional in person. Thank you for agreeing with Laura and Immi :) Think of you often and hope you are doing well!

XOXO's
Lizzie

[PastorDan]

Yeah, what they said!

Your neuro #1 needs his name plastered all over somebody's wall of shame somewhere.  He really owes you, your new neuro, and the medical profession an apology, but I wouldn't hold my breath waiting for it.  What a ...   well, a jerk!

[immisceo]

I'll just be a bit lazy and second everything Laura said.

I'm sure sorting that out was anything but easy, but you should be proud of yourself and the outcome YOU worked for. Congrats on jumping through the hoops needed to get good care and treatment for yourself.

[Lulu54]

Lizzie,
that is some update.

1) good for you to tell neuro #1 he was out of line and leave him in the sunset

2) neuro #2 sounds like a keeper and I'm glad you connected with her

3) your mri news is pretty good but I want that active lesion to quiet down by the next MRI

4) boo to the insurance company on denying tec for a first line drug- it is no more costly than the others - you can rightly turn down Gilenya because of the side effects and the interferons for the complications with depression.

5) I am ecstatic to hear that the program with Active Source and Tec support works as they say it will.  you deserve a break somewhere and I trust they will continue to support your use.

6) did I say your new neuro sounds wonderful?  

I think that covers it all - thanks for bringing good news our way.
hugs, Laura