Radiologically Isolated Syndrome - Would you treat this ?

[ApVish]

Hi All,

Throwing a question for what you would in my situation.

DH diagnosed as RIS, no symptoms so far and we have tried 2 neuros already who wouldn't commit and has referred to MS clinic. We don't know if the MS clinic doc will recommend medication or not...the appt is still months away.

But what would you do ? Would you be inclined to treat RIS with medication ? Yes, no, why would you say that ?

Thanks in advance for all your insights.

[Lexie]

Personally I would do what ever the dr told me to. I value my way of living and will do anything to keep it like this. I elected to take copaxone injections daily just to say I tried everything there was out there. I do not want to have any regrets in progression without knowing I tried everything I could. However if the medication were a huge financial burden I would not take the copaxone because it may slow the progression or it may not. If there were a cure I would surely do everything I could but as of yet there is NO cure. It's a hard decision but I want to put my family as few changes in their lives as possible as well as myself. Good Luck

[SNOOPY]

Hello ApVish,

RIS is relatively new and to treat or not to treat is still being debated. You can find numerous articles on the internet related to this topic/debate. The URL posted below has a video you can watch/listen regarding RIS.

http://www.medscape.com/viewarticle/720673

[ApVish]

Thanks!

Thanks Lexie, What I am worried about is the side-effects of the medication itself. The site reactions or the flu like symptoms and some people saying the medication themselves gives them fatigue etc.

[ApVish]

Thanks Snoopy! Yes, I did read through the debate and...it got me even more confused

[SNOOPY]

Thanks Snoopy! Yes, I did read through the debate and...it got me even more confused

I find RIS interesting and have done some reading on it but, I agree, RIS and treating or not treating can be confusing. Since RIS is relatively new I believe you are in unchartered waters in regards to treatment

I have no idea what the Doctor will recommend but do not hesitate to ask questions and, if necessary, have your husbands doctor clarify why meds should or should not be started.

[cosake]

Don't hesitate to consult with someone for a second or even third opinion.

Good luck with your (dh) decision.

[BigA]

If you do consider medication, Copaxone is the least toxic, with the fewest side-effects. Flu-like symptoms seem tolerable until you take that shot.

The needle part is the most frightening before you start, but for most of us isn't an issue after a while.

[0485c10]

No I wouldn't and i think it has gotten a little crazy, pharmaceutic ally money driven-wise to treat a disease before it is known what disease they have "YES!, $25,000 a year while you decide what it is yes come here my sweetie, give my your money..." says pharma.

IMO monitoring is never wrong, ignoring always is and treating before your are certain what it is is just stupid and the pharmaceutical companies have monetary reasons to promote panic that it has to be treated before it is certain...not monitoring for 1 year is $25,000 in pharma's pocket, not monitoring for 2 years is $50,000 not monitoring for 3 years is $75,000 and if it turns out it not ms thats a permanent dollar lose of $25,0000 per year for the lifespan of a person, thats a lot of money and worth generating panic that it has to be treated right now, even if your not sure what it is...

the disease of ms-multiple sclerosis- requires "multiple" episodes in "multiple" areas of the cns. its possible for one or the other to not be met and in that case there is still is something wrong but that something wrong might not be ms until time & space is proven and everything else it could be is excluded.

before 2005, a person had a first "clinical" episode highly likely to be ms the doc said come back when you have another episode and we will start you on meds. while the person waited for the 2nd episode he did not definitely have ms he had "probable MS" highly likely to become definite ms. after the 2nd episode in a different area of the cns, then he had clinically definite ms.

so they chugged through the mri's of what mri's became clinically definite with that 2nd attack.... and they statistically determined how many lesions in what locations where highly probable of having this 2nd episode within 10 years...they wrote it in a 2005 revised McDonalds MRI diagnosing criteria so a person no longer had to wait for 10 years before they knew it was definitely MS and another type of definite MS...laboratory definite MS. they could start when it was laboratory definite.

so pharma was getting more & more money. now they wanted even more, take it one step farther, a person no longer has to wait for the clinical epipsode cha ching! only lesions have to be found with no symptoms. hence RIS was born.

they were moving toward that but still it was desired to have some ties to a real disease to treat a real person and not the MRI file.

in 2009 an international diagnosing procedure came out--that now said with one episode an any abnormalities, any # of lesions in any location has a 90% chance of becoming MS so treatment could be started.....

sometime between the 2009 international ms & the 2010 revision of the mcdonald diagnosing guide this RIS came out, lesions without clinical implications.. treat the mri not the person, just the "file"..i believe in a response to this RIS controversy they revised the 2005 McDonald MRI diagnosing procedure, to a 2010 version that required fewer lesions but did require at least 1 episode. to keep medicine's feet grounded in reality not some kind of virtual make believe reality. pharma's world. it kind of sucks the money for trials comes from pharma and they define the virtual reality. they define what is financially beneficial to them. its a real frightening scam we are watching.

this whole RIS thing is just a money grab by pharma

look it has gotten better than the past, when it was a person had to wait for 10 years for a 2nd clinical episode, that was the past, not now, NOW a person just has to monitor the mri's to wait for a new lesion. as person with ms has about 10-12 asymptomatic silent lesions a year, so they can be caught by mri monitoring, don't need to start a med b/4 a person knows what disease it is...pharma is the benificiary of getting people to start a med before knowing what is being treated.


link to the 2010 revision of the McDonald MRI diagnosing criteria rejecting this whole RIS idea by requiring a clinical episode...

http://www.nationalmssociety.org/new....aspx?nid=4713

Monitoring is NEVER wrong, ignoring always is & treating before being certain what is, is just stupid

[ApVish]

Thanks All!

Thank you all!

Really found all your replies useful. We have the MS Clinic appt in January, waiting to see what the Doc has to say and waiting to see how DH's health is till that time.

Hoping that the things will be good

[0485c10]

value of DMD's

Here is a thread about the value of DMD disease modifying meds & cost effectiveness, please read them. to get an idea of the real pushback about this RIS thing.

reply #3 has links to all the articles on the studies.(single study producing many articles on it)

http://www.msworld.org/forum/showthread.php?t=113074

it says..
the AAN report says that(AAN=American Academy of Neurology)

those taking Avonnex gained 2 quality adjusted months over 10 years compared those that didn't.
those taking betaseron had 6 out out 10 years relapse free compared to those not taking meds that had 5 out of 10 years

in the webmd article it says that over 10 years the cost of the med is $267, 710.

and in the UK betaseron costs about $12,000 per year
and in the US its $34,000 per year.

[Thinkimjob]

I agree, 0485c10.
And the earlier they can get people on dmds, the better their numbers in terms of progression, number of flares etc, as well as financially, look.
Degenerative diseases are a gold mine.
30% fewer flares? Placebo is about the same.
And, yes, I take my Copaxone like a good girl, because maybe it might help and there's not much else you can do. It's a dollar a day in Australia (taxpayers pay), $12,000 otherwise.
If It was costing me that much out of my own pocket, I wouldn't take it, even if I could afford it. I'd rather spend the money on something enjoyable.
Here, they will now prescribe dmds after one neurologically dodgy event and an MRI.
It was three years before I had my second lot of symptoms and an MRI.

[SNOOPY]

For those who are saying yes to treatment:

If you have not done any research on RIS please do so. RIS is not CIS. A patient with RIS has a MRI for a non-MS related reason, has no Neurological symptoms, and lesions are found.

As I said in my earlier post, I find RIS quite interesting. I have looked at, or at least tried to look at, RIS objectively.

As a patient who has never had any neurological symtoms, who had a MRI for a unrelated issue, justify or come to terms with injecting medication into yourself for a disease you may not know about and have no symptoms of? I would guess there would be more denial and doubt about having MS if the person didn't have any symptoms.