Radiologically Isolated Syndrome (RIS) to treat or not to treat

Question

Hi All,

I had RIS until my dx a few months ago and the debate on whether to treat or not to treat is very interesting. I elected to treat my MS until my HMO yanked the plug on my treatment and I would have had to pay out of pocket. At any rate, I found this very interesting debate online. Hopefully this can help somebody here with RIS who is debating whether to treat themselves or not.

http://www.medscape.com/viewarticle/720673

Lulu54 · Accepted Answer

The medscape link certainly brought up a lot of questions about attitudes toward treating RIS and CIS.  It was fascinating to actually hear them banter back and forth.  

I hope everyone in this situtation can take the time to either read or listen to this webcast. 

Please look into financial support  programs for your DMD.  I hate to think of you not being on something, strictly because of the insurance.  But I hate to think of all the folks out there who are in the same boat.

be well,
Lulu

halah29 · Answer

I have RIS..I'm treating it..per the neuro's advice. I went back and forth with this in my mind. Hopefully the MS stays at bay for as long as possible. Good luck with your fight for meds if you choose them.

johnniebear · Answer

Hi Ken I found this about RIS & CIS

http://www.medscape.com/viewarticle/585254.

I have just a step above this with what the Dr calls mild MS.  and he  doesn't recommend DMD'S yet.. I really think it because they will have a fight on their hands with the insurance co,  so I'm at risk while they want more sx's,  just got my Dx this April

Hope this helps some

John..

KenDub · Answer

Sorry Chriss, I missed your post way up there :)

I agree that patients with RIS or CIS should be allowed to make an informed decision about treatment of a disease that they possibly have. I believe in strong cases of CIS or RIS (like mine, if the symptoms aren't considered serious, but there is strong radiological/laboratory evidence) the Doctor should be held liable for not informing the patient or withholding treatment when requested.

KenDub · Answer

Red - Thanks, let's hope they pay! If not, maybe I should go to the Media with my story? I've considered it many times, I just value my privacy a bit too much for that right now.

Lulu - I looked into financial support programs and was lead to a great one by the M.S. Specialist I was seeing. Unfortunately there was a miscommunication between them and my wife about our insurance situation and they weren't paying for the medication - we were being billed! I was taken to court by a collection agency for the Hospital I was getting my medication from and I lost the case - we ended up paying for 4-6 months of Rebif out of pocket.

At any rate, our financial situation at the time was 3x the poverty level (not much to live on, but not much financial assistance available in California with that income).

RedFlame · Answer

That's terrible!!!  I just hate these managed health (profit) companies!  

It seems that they would be liable in some way for any continued degeneration that occcured from the CIS and the dx. of MS

I'm sorry that happened to you

Red

chrissyle · Answer

Hi Ken Im sorry to hear that,Personally I think that's a bunch of crap I don't no how they get away with it.If you feel you need the treatment they Should allow it.Take care,best wishes:)