[strk3]

We have a regular group of friends we hang out with, including most holidays and special occasions. The 10 or 12 of us have gotten together the last 12 years for New Year's Eve. It was our "adult time" where we could leave the kids with a sitter and have a nice night out. This year everyone had a conflict and the streak came to an end. SO, my wife and I were invited along with the kids to a "new" friend's house for dinner. There were 4 couples and their kids. We had never met 3 of the other couples.

After a few hours, we learned that one of the ladies had MS and was on Tysabri. I'm not completely out of the closet with my MS (for the typical reasons) so I didn't mention that I had it. I wasn't involved in the conversation that led to the disclosure but came to understand later that she was dx'd the same time I was and goes to Rush in Chicago like me. Weird coincidence.

She was doing pretty well. No one would have known she has MS. Per my wife, she is vastly improved on Tysabri and her lesions are now inactive. She's been on the drug 7 months.

Prior to my dx, I didn't know what MS was or anyone that had it. My first encounter with another MSer other than in the doc's office was at work but I found out he had it only after he left our firm. My next encounter was in retrospect as a co-worker of my wife had it but I never saw her again after my dx. And, then there was a lady in my grandmother's nursing home that had it. I spent a considerable amount of time with her instead of conversing with grandma as granny was asleep most of the time and not in her proper mind.

Since those meetings, I've come to learn that 2 of my old neighbors (my age) have it, 2 friends of my family have it and now this new friend we met on New Year's has it.

I'm always disappointed to meet someone with MS. I guess this last time made me feel worse. First, I couldn't let on that I have it while she was very open about it. Felt like a hypocrite. Then theres the whole thing of feeling guilty because in a way you're glad someone knows what you're going through but you never want them to really know what its like as you never want anyone to have MS.

I really liked this lady and her husband. Their children go to school with mine and since its a small Catholic school and we all plan to send the kids to the local Catholic High School, we'll be together a while. What was hard was hearing what she said about Tysabri. Again, I was not privy to the conversation just what my wife said aftewards. She apparently did not know as much about it as I would have liked. She kept saying only 2 people died and it was because they were using other drugs that made the PML more likely to occurr. She clearly wasn't up to date. Maybe some day I'll have the stones to clue her in or at least tell her about Tysabri (from what I know) so she can at least ask her/our neuro about things.

Any way, its a small world. And, MS is too common (albeit still rare).

Stay well.

Strk

[Blessings2You]

I am very open about my MS but I understand why some people are not. I have spoken several times with a man who has only shared with his wife, one other colleague, and with me. Even his siblings, parents, and son don't know. He has his reasons. I didn't have to take a blood oath, but almost.

I've always "known" about MS, as my father had it, but I actually only knew of two or three others until I got diagnosed. Then they started coming out of the woodwork. Every other person I spoke with said "Did you know that so-and-so has it?" Or "Whatsisname's brother has that."

MS so often has invisible symptoms, and we don't always go around wearing 'I Have MS' tee shirts, no wonder there are people such as yourself that never heard of it pre-diagnosis.

Perhaps there's an indirect (sneaky) way you could advise this woman. For example, could you or your wife contact her, maybe even by mail, and tell her that since the conversation you had learned thus and so, and give her links or other sources?

[Kitty]

I've met a lot of people with MS since being dx, too. I guess I never really thought much about MS before knowing I had it.

Thinking back about my Dad and the sx he had over the years I've often wondered if he had it, too. He had a host of other problems and that was always used as the blame for the sx he had.....but some of what I experience now was exactly what he used to complain about. Especially the itchies.

[lady_express_44]

I am very open about my MS too, and a couple of years ago I found out 4 of the mother's on my daughter's ball team have it.

I think it is much more common than the statistics show.

Cherie

[Momma's Kids]

Yes, it is a small world...my friend of 49 years was dx back in the 90s or so...we never ever thought I would have the same dx a few years later.

We also have a guy we went to school with dx in the 70s...yep, for such a big place it sure can be small.

Glad you do get to spend time with your friend, maybe she needs to know you have more in common that she realizes.
I'm open with my MS...if someone notices the cane or me holding on to a buggy just a little too tight. I feel it gives one the chance to be a little more informed about MS and I sometimes get them to donate to the cause from just a conversation.

[Jules A]

I've met a couple of people since being diagnosed also.

I disclose to close friends, family and when I happen to meet someone like in this case where they tell first. I'm concerned about it becoming common knowledge and interfering with my employment prospects in the future so I don't tell work friends.

[SallyC]

I was very secretive about my MS, in the early 70s, when I was DX....but DH had a big mouth and a lot of friends, and one HS buddy with MS. I was sooooo angry with DH for blabbing, but then, I was sort of forced to talk about it.

Now, of course, I'm an open book. Nobody even asks, how I feel, anymore.

It is, indeed, a small world, Strk. I have met many peeps here in my town with MS. Some of them are very dear Friends.

[doydie]

Before MS I was an RN and my biggest passion was education. I loved to teach, patient, family, nurse aides, fellow RNs or new graduate nurses. So when I found out I had MS I just knew that I would always be open about my diagnosis. So anyone who knows me and a lot of other people who have just been casual aquantances in the grocery line now know what MS is. They also know by meeting me who has RRMS that it isn't a death sentence. It isn't a death sentence for anyone else either but you know what I mean.

[PolarExpress]

Don't feel guilty! Disclose whatever you're comfortable with, to whomever you're comfortable telling.
It is funny, before I was dx'd, I had heard of MS, but didn't know of anyone personally who had it. It's kinda like buying a car. Buy a blue Honda, and suddenly all you're seeing is blue Hondas... Once I was dx'd, they all came out of the woodwork..Same principle. Just a theory.

[FaithS]

I met one person w/ MS online personally. Although she lives in CA, and I live in KS, her parents live just 30 minutes from me, and we've managed to get together twice.

Once, she also invited someone she knew who lived close by who also had MS. Turned out that we had met several years before at a church camp, and that she (from KS) had been in voluntary service in Mississippi with my mother (who was from Canada) in 1959-1960. How cool. Small world, sometimes.

But, mostly, I don't know people with MS.

I've been very out of the closet with my MS, mostly because my symptoms and flares are so huge that it would not be possible to hide it in our community.

Wish I knew more people with MS. Contacted the Wichita NMSS in October regarding a support group in my community. Would be willing to help, but not be in charge. She said that there was someone else from our area interested in getting a group started. She was thinking maybe Feb. (Why Feb? I don't know what was wrong with October.) If I don't hear from NMSS by then, I'll probably contact her again. The director of that chapter strikes me as a totally friendly people person, but not very organized.

~ Faith

~ Faith