Here's the link again to the MS Society page about CIS. Hope it works this time...


http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/cis/index.aspx

I guess maybe I worded my question strangely. The lack of response has me wondering....has anyone else here been diagnosed with CIS (clinically isolated syndrome)? Now or in the past? If so, what did it mean to you and how did you deal with the near certainty that MS was lurking somewhere around the corner and the fact that there was nothing you could/can do about it but wait?

When I was 1st dx, I was told CIS & started on Copaxone. Right after my DX I changed DR's & was told RRMS. I have a friend who was dx CIS almost 4yrs ago, is on Copaxone & has had no more problems.

Are you taking meds? The sooner the better.
Hugs,
Tammy

No, no meds. I've had 2 doctors (both MS specialists...the only two in my city) opt to take a watch and wait approach. I just don't know how I feel about starting the drugs, with or without the MS diagnosis. They did tell me I could start them but felt it would muddle the outcome. I quote, "if you start the drugs and you're doing great in 2 years we won't know if it was because of the drugs or because you would've been doing great anyway and we could've saved you the pain and cost of injections." I've had 3 follow up MRIs since September and will have another in July so they are following me closely....but that's about it. Just waiting. One new lesion or one new incident and it will be official. I know it's a weird thing to feel "confident" about but I feel the diagnosis is coming. In January of last year before this all happened I had difficulty swallowing for a few weeks and saw an ENT who could find nothing wrong. I feel that would have been my "first" event if I had known to see a neuro and get an MRI.....

You raise a good question. I stumbled on my dx. After going for an eye exam because of a head ache thinking I needed new glasses I was dx with papilledema (optic nerve swelling) kind of like high blood pressure in your brain. Anyway, I went for an MRI because of that and when the neurologist was reviewing the scan he saw a couple something he said was probably nothing but could run a few test to rule it out. He did a blood test and spinal tap while I was in his office. A week or so later I get a phone call for possible MS. Second MRI no changes, third MRI, slight change. I had very mild symptoms but not enough to count as a relapse. We watch and waiting for about two years before I started any medication. I changed my diet read everything I could find about MS. Most of the things I read suggested that even possible dx are recommended to start some type of treatment. I didn't see the need to get stuck with a needle every day or once a week if they were not sure. But the more I read the more my mild symptoms sounded like MS and after the clinical dx due to the MRI changes, blood work and spinal tap I made the decision to start medication in the hopes that it would slow any progression. I was told possible MS in 2008 and started medication in 2011.

As for your husband, mine didn't want me to acknowledge that I may have MS either. But like you I knew the little things in my body were adding up to the list of symptoms I was reading. I ended up finding this site, reading the post and the folks here on DS helped so much just by sharing their stories. It is such a personal decision. Best of luck to you.

CW, I find your post really interesting. Thanks for sharing, it's good to know that I can always change my mind and start meds when/if I want to. My day to day symptoms are relatively mild too. I have vertigo about once a month for a few days, blurry vision if I get too tired, muscle fascilulations (how do you spell that word anyway?) from my head all the way down to my feet but they don't hurt so they don't really bother me anymore and some numbness in my toes and fingers. Again, thank you for sharing!

I was told when I got optic neuritis back in 1982 and the doctor refused to tell me what it was from but that it would go away in about 6 weeks, finally relented and told me that I might get MS in the future. I didn't believe him (I thought it was from the primitive computers I was working on back in 1982) but 16 years later, when I got weird symptoms in my legs, I remembered what the eye doctor told me, I went to the library and got books out on thyroids and MS.

When I read that MSers had bowel and bladder problems, I knew that I had MS even before the neurologist told me. It explained the unbelievable constipation problems I had had all my adult life that no one I knew had. Having constipation and the hesitation problems with my bladder finally made sense. I hope that you can find the answers that you are searching for.

Try to stay positive. I didn't believe that I had MS for 16 years and I didn't have any more symptoms (except the chronic constipation and hesitation) for all those years. So perhaps it could never happen again.

Good luck with this period of time with no symptoms. It may not come back. Count your blessings.