Types of MS and Insurance/Medicare

In July (My birthday month and don't forget!  I want a celebration!!!), I go on Medicare with my insurance becoming my secondary insurance.  It was the year mark so my neuro gave me a dx.  It is Progressive Relapsing MS.  I half listened but I knew from her voice it wasn't a very nice one to have...So true to my nature, I half listened nodding with "okay's" and "yes I understand".  

Then I left the office and finally decided to understand it having my husband explain last night. Not satisfied I googled it.  It doesn't sound too bad but.....................This is what scares me.  It seems to be thrown in with all progressive MS's.  My fear is that my insurance or Medicare won't pick up the DMD.  We always hear on this board and others that PPMS is not being given treatment but given meds for symptoms only. (I think of our Red and her struggle).

Do any know?  Does it have to be an actual dx of PPMS before they stop paying?  Don't worry about upsetting me now.  I ready to hear it.

Sumana

[Lulu54]

From what I know, and I just heard a MSologist speak about progressing relapsing MS last week, there are no DMD's approved for use on this form of MS.  The drugs that are offered are meant to be used for symptom management.

I believe there are clinical trials looking at various treatment options, but I on't believe anything is officially approved.

Do you think your DMD is making a difference?  If so, you might be able to slide through and keep using it for a while longer.

I'm sorry to hear this dx, but I suspect you already knew you have a more agressive form of MS than RRMS.

Lu

[Sumanadevii]

Lulu, it is hard to tell if it was the steroids or the DMD.  I will say when I first saw my specialist, I had lost total use of my dominate hand.  It wasn't strong enough to strub a sink or wash my hair.  Today while it is still weak, it works.  During this past year nothing major has happened.  With the steroids and Rebif I was able to move....transfer myself safely and use my walker inside for short distances.  

I did crash and burn when taken off the steroids but only back to where I was on my first visit to her.  I am no worse off.  So the DMD must have been preventing it from becoming worse.  So,  yes, I think they were helping.

Guess I will just wait it out.  I do think she understands insurance/Medicare and seems to be plowing ahead like it will happen.  It is just in reading about it that scares me.

Sumana

[AMO]

hi sumanna,

what is your secondaary ins? is it private or a group? willl it have RX , or do  you be having part D?
Tysabri is billed through medical, i wonder if that  is why she's changing you.

[Sumanadevii]

It is a group policy from a company my husband retired from years ago.  It is an excellent one and RX is covered.  We didn't take Part D on Medicare because we knew our insurance would cover it.

[AMO]

I'm not sure about how different ins would deny/approve    coverage on a dx's.
my doctor   and i have never had discussion on 'exact type' m.s. dx's.  HOnestly, I have never asked and he  just writes rrms. he wantns to keep me on any treatment possible, and this has worked for us.

Being on tysabri    my medical (Medigap Plan F) picks up the innfusion, and i aam in the access program in biogen.
Being pos. for j.c. he only gives me 18ish mos for infusions, so I won't have to pay any. After this, we will rethink  options. .

At my last treatment actually i asked if other patients were in the access program and yest they do, but there are other  assistance programs. HOw she said It made me think   there are assist programs for most anyone if insurance doesn't pick it up.

Ha, i forget what you wanted to know! LOL if any of this was what it was?? lol
amo
happy birthday:)

[Sumanadevii]

YIPPY!!!  I found the answer...and where else but at the MS Society webpage!!!!

PRMS is treated with Tysabri!!!!!

http://www.nationalmssociety.org/about-multiple-sclerosis/progressive-ms/progressive-relapsing-ms/how-prms-is-treated/index.aspx

[Sumanadevii]

Kisses and kisses to Amo and Lulu for trying to help....Oh I am sooooooo happy!!!!!!!

That ladies and gentlemen (and our giant) is my birthday gift!!!!

Doing the happy dance!!!!1

[Lulu54]

I'm glad I was wrong with that answer....  

it reads that it is also treated with the interferons, which Rebif would be included.  It sounds like you need to talk to the doctor about making the switch to Tysabri.  good luck.

[Sumanadevii]

The paperwork for Tysabri was done last week when my neuro returned from vacation.  I stop Rebif on Wednesday when I take my last shot of Acthar.  Then nothing for three months.  I am concerned but making plans should I need go to into a nursing facility ...I have no idea how long the Acthar will last in my body.  

But hopeful?  OH YES!!!!  I just told my neuro I will prepare for the long run...lol

[AMO]

good news  for sure !

The people at TOuch program are very helppful; and watchful. They call on a followup schedule. I  shuold have called them months ago when my infusion center had been billing my ins for the med, which i get for no cost. I got such run around , finallyy aat the follow up call i mentioned what was going on and the took care of it right away. I think they scolded the billing dept  big time:)
YOu'll be just fine i'm sure. don';t worry. amo

[Sumanadevii]

Thank you, Amo.  I am excited to be trying something new and hoping to be one of those miracles!!!!!

Hugs,
Sumana