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**derrie** · 12-02-2011, 05:31 PM

Ugh on the ON-- sorry to hear that is flaring back up for you.

Regarding a CIS "room," that's not a bad idea. I don't see a ton of people talking about CIS around here, but there are some, and it's reasonable that a CIS thread could be useful and a good place to share experiences. We have threads for people in the limbo of pre-diagnosis, and we have a thread for MS newbies, so why not a thread for CIS, to share and exchange with other people having that experience?

I say, mrolbiecki, you should feel free to start a thread in which CIS folk can gather and share. I'm one of the limbo people, and I find a lot of support in our limbo thread. I think a CIS thread is a great idea, and you should feel empowered to start it.

And good luck with your ON-- I'm no expert, but vision isn't something I'd think you'd want to take chances on. I believe the earlier you see a doctor and treat the ON, the better chance you have of minimizing more permanent damage. Others around here have more experience with ON and could advise you on that.

Be well!

**mrolbiecki** · 12-02-2011, 06:01 PM

Thanks for the reply, derrie

I'm in a bit of limbo here myself...I'm gonna have to check out that thread!!

**Jules A** · 12-02-2011, 08:40 PM

I'm not a big fan of the CIS diagnosis. It is only isolated until its not and in my experience with MS it very rarely only happens once.

Good luck with your doctor's appointments, I agree with Derrie: the sooner the better. Please keep us posted.

**dougd35** · 12-03-2011, 07:22 AM

I only had an isolate incident of optic nuritous but have three brain lesions and some bands in spinal fluid. No spine lesions. My neuro kind of has the same opinion as JulesA. He doesn't believe in the wait and see theory and is convinced that I should start treatment so I'll be starting betaseron within the next week. Although he said it was a CIS, he officially dx'd me RRMS.

**kebsa** · 12-03-2011, 10:20 AM

my understanding of the use of the CIS diagnosis was a way of getting people access to the DMD as early as possible. From what i remember about the CIS category it was stated that while it was not definite that the person would eventually have another episode, the majority would and under the original diagnosis guidelines for MS that meant having 2 or more episodes affecting different areas over time- (i know thats not the exact definition but its along those lines) however clinicians were becoming frustrated that that may be months or years during which time, if a person does have MS the inflammatory process is still slowing goinging on.

once the results of a very long study became known, a 16 yr study involving betaseron, it was found that there was evidence that the drug could reduce the number and frquency of flare ups and therefore the accumulation of disability but if a person had to wait for a sencond attack before having access to the drugs that may mean a greater level of disabillity in the long run. SO they noted that the symptoms/findings of what is now know as CIS had always been highly predictive of a furture positive dx so the term CIS was developed and the guidelines for the DMD's were altered so that a dx of CIS meant that access to the drugs was now easier. If you think about it, only a few yrs ago many neuros would advise waiting until the symptoms of ms were a significant problem before pushing DMD;s that changed once they had some real evidence that the inteferon type meds in particular did seem to reduce the rate of accumulation of disability

A person i met who had only just been dx when i was, had had a first attack some 4 yrs before, sadly she had quite significant effects from that 1st attack but was not able to access the dmd's until around the time i met her 4 years later after her 2nd attack- she was angry that her treating neuro and other MO's had all be certain that she had MS but had not been able to prescribe the meds that may have even further delayed that second attack or reduced its severity ( she was in rehab when i met her)- that is my understanding of the use of CIS dx. just as in countries like here in australia where there is a subsidy system that helps with meds called the PBS, if a med is not on that scheme we pay full price but to access the expensive meds such as betaferon the doctor has to apply for an authority and say the patient meets the criteria. another example of the effects of this kind of thing is that because there is less documented evidence about the effectifness of DMD's for secondary progressive MS simply because the drugs have not been round for long enough, here in australia if your dx changes to secondary progressive, we can no longer access the drug even though it is felt by the neuros to be useful so they simply do not change the formal dx!

its very frustrating how a simple label can make the difference to access to meds, treatments, support etc rather than the actual day to day effects of the condition that the person has to deal with

**mrolbiecki** · 12-03-2011, 05:02 PM

My neuro didn't seem to accepting of putting me on meds...He kept saying that if I were to progress to MS, the meds really wouldn't help that much in the mean time, and if I never progressed to MS it would be a waste of money to be on the meds. I can't afford the meds any way, sooo....lol

I'm supposed to touch base with the MS education nurse on Monday and let her know how my vision is. Last time I went almost a week before I went to see a Dr about the blurry vision. This time, I'm not waiting around too long. Steroids helped so much before...I'm ready to start them again so I can get this over with lol

Thanks for all the replys, everyone <3

**salamandertom** · 12-03-2011, 07:35 PM

Hi,
I was diagosised with CIS initially - until my next ON incident in April (dx in January). My neuro basically said the CIS diagnosis was a short term thing to get me RIGHT on the meds as I didn't meet the criteria for MS diagnosis yet. You should definately be able to start a DMD now if that is what you choose to do. I would say that your diagnosis will change as well to straight MS. HUGS and best of luck - I hope the ON is short and sweet. Did you recover full vision after the first incident?

**mrolbiecki** · 12-03-2011, 08:45 PM

Originally posted by salamandertom View Post

Hi,
I was diagosised with CIS initially - until my next ON incident in April (dx in January). My neuro basically said the CIS diagnosis was a short term thing to get me RIGHT on the meds as I didn't meet the criteria for MS diagnosis yet. You should definately be able to start a DMD now if that is what you choose to do. I would say that your diagnosis will change as well to straight MS. HUGS and best of luck - I hope the ON is short and sweet. Did you recover full vision after the first incident?

I did recover full vision! Hoping that's the case this time too! My last episode started out pretty mild (like this one) and sort of progressed over 5-6 days. I ended up almost color blind in my left eye and really shouldn't have been driving with how bad my vision got. I did IV roids for 3 days and started getting better almost right away. So I have a few more days until I would expect it to get worse. Some times Mayo can be pretty conservative...I may need to light a fire

**salamandertom** · 12-04-2011, 07:56 AM

That is wonderful that you recovered full vision. I was one of the few that does not on their first incident. I have had ON several times and lose vision each time.

I also don't respond to steroids either, double bummer.

I have adjusted with the driving thing, though like you I do not like driving DURING ON. I hope you will recover full vision this time as well! Best of luck!

**Jules A** · 12-04-2011, 08:17 PM

Originally posted by mrolbiecki View Post

My neuro didn't seem to accepting of putting me on meds...He kept saying that if I were to progress to MS, the meds really wouldn't help that much in the mean time, and if I never progressed to MS it would be a waste of money to be on the meds.

I wouldn't be happy with this strategy and would at the very least seek a second opinion from a MS specialist.

Thankfully your vision did return but my concern is that with every flare there is a chance of permanent damage.

Fingers crossed you never have another episode!!

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CIS anyone?....

CIS anyone?....

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