Do you personally know others with MS?

[1755620237@facebook]

It seems like everyone that knows about my MS knows at least one other person with MS (of course they are doing great). I don't know anyone with MS, like where I can talk to them face to face.

I know there are support groups. The support group in my area has meetings every other month, at night, with drug reps. I am no good at night. There are meetings in neighboring counties, but I can't drive that far. These are mostly at night with drug reps also.

I don't know what I hope to gain from meeting others with MS, except to know that I am not the only one in my community facing this. It is lonely.

I am really thankful for this site to give me a place to ask questions and compare notes with others. It does provide a lot of comfort.

[heliotrope]

I do know others that have MS... but they, by and large, have benign MS. I do go to those reps' meetings, but often I'm the youngest (by 30 years) I have yet to feel comfortable going to support groups... so I kind of know what you're going through.

I don't have great solutions. I've made myself available (usually through family friends) as a resource, which has helped me meet others. I wonder if there's something you could do with a local MS group?

[salamandertom]

well, my uncle's wife has MS, and has been diagnosed for 11 years. I have known her since I was 9 years old - and she is an amazing comfort, support and example to me. I think the support groups are probably good. I don't know though, I haven't been to one. I should look some up and go to one too. Face to face might be nice too. I love this board, but real life must be good too. We'll have to wait and see what someone who goes says.

[Lendi]

I know of two other people with MS. One has had a very difficult road the other tough times but by and large is doing great.

There aren't any support groups in my area so I'm out of luck, there unless I want to start one and that's more than I can manage. I'm very shy, for a start.

[foxz71]

My Boss introduced me to someone he knew with MS who is doing really well and she has had it for years.

When people tell me they know someone with MS I generally ask if they are comfortable introducing us. I think it helps on the "off" days or days I just feel kinda down to call them up and chat. And, when my husband can't take off work for an appointment...its nice to know there are others I can call and ask for support.

I live pretty far away from you but my contact info (email) is open to the public here. Feel free to contact me anytime if you need a shoulder and that goes for anyone here.
Kim

[Alicious]

I know my uncle, who has had it for 15 years longer than I have. I know a good friend's brother, who has also been my friend for 15 years, and who was diagnosed the year before me.

For me personally, I don't like talking about it much, so I come here and chat a little with friends and family, but mostly talk about other things so haven't hit a support group.

It sounds like you really need people to talk with who have it, and hopefully this site can give you some of that. xoxo

[KMCangel00]

I don't really know anyone personally with MS - when I was growing up my mother was really close friends with a woman who has MS, she actually recently saw her at work (they used to work together, now work in different parts of the hospital) and mentioned my DX - her friend was more than willing to get together with me or even just be an ear for me, she's been through pretty much all the doctors around here and now gets Tysabri in Boston, but...I don't know. I'm still so new to this and she has been affected so severely that I kind of feel like....it would hurt more than help? I hope that doesn't sound rude. I'm just becoming very, very afraid for my future, the more it's sinking in.

My little sister's best friend also has a sister with MS - she's a little older than me (32, I'm 28) and she's given me advice through my sister (LOL) but I just don't really have anybody that is on the same "ms level" as me. It's hard. I feel like lately I have been cocooning into my self and I'm not going to a very good place...I thought I had reached the acceptance level? Now every time the muscles in my leg have a little spasm or twinge (which is like...every three minutes), I just want to pull the covers over my head and tell everyone I will remain in bed forever. :P

I would love to "know" others with MS. There's a conference at the end of the month in CT (where I live) put on by the CT Chapter of the NMSS that my boyfriend, sister, and I will be going to - hopefully I'll get to meet some people there. There's also a support group at the hospital near where I work once a month, but I'm a little anxious about going that route right now....

That being said, this forum has definitely filled the void for me at least a little bit, and I really appreciate all you guys There's a few of you at pretty much the same stage as me, and I love that everyone is so supportive. This group rocks!

[heliotrope]

Kristen,
If you want another contact, let me know. I'm in a similar area - and actually younger than you are. Email should be in my profile.

[phoebe.]

I do not know anyone else with MS. No one in my family does either. I feel isolated especially when trying to figure out if what I am experiencing is "normal". This is still pretty new to me - I am grateful for you guys on this site and the wealth of information!

I have gone to a couple of the meetings sponsored by drug reps, but that doesn't have the feel of a support group at least yet to me. But it is clear that many of the other attendees know each other and do see it as a support group. Maybe if I attend more regularly it will for me, too.

phoebe.

[wkikta]

I know lots of people with MS. Met them through Support Groups. I go to a great Group that meets every Wed. for lunch. We even sometimes talk about MS. I go to as many Drug Company presentations as possible, meet lots of good people at them.

[salamandertom]

I know lots of people with MS. Met them through Support Groups. I go to a great Group that meets every Wed. for lunch. We even sometimes talk about MS. I go to as many Drug Company presentations as possible, meet lots of good people at them.

Do you find out about the drug company presentations from your neuro office or at the support meetings? Those sound really interesting.

[Shaky]

It seems like everyone that knows about my MS knows at least one other person with MS (of course they are doing great). I don't know anyone with MS, like where I can talk to them face to face.

I know there are support groups. The support group in my area has meetings every other month, at night, with drug reps. I am no good at night. There are meetings in neighboring counties, but I can't drive that far. These are mostly at night with drug reps also.

I don't know what I hope to gain from meeting others with MS, except to know that I am not the only one in my community facing this. It is lonely.

I am really thankful for this site to give me a place to ask questions and compare notes with others. It does provide a lot of comfort.

Guess I'm lucky in that I do know quite a number of people with MS. There are all those who attend our monthly support group and the smaller group who take the weekly yoga class that the MS society pays for. My biggest surprise came when a young lady who has recently been attending church services where I do divulged the fact that she, too, has MS. Of course, I immediately recruited her for the yoga class, and we began sharing rides. I now know many people that I would not have known if I didn't have MS.

[Portia]

I am in Kansas too and there are no support groups where I live except one that meets when I work. I took a day off work just to go once and everyone there was in their 50s or older and all on disability. I felt out of place. The group in Kansas City, where my doc is, meets when I can't go too. I know of one other woman in my town who has MS, but I don't actually know her.

I would like to find out about those drug company presentations, but have never heard about any in my area.

[Thinkimjob]

Lots

There are at least 5 people in my town (pop. 3000) with MS.
There were 4 people in my old home town (pop.<100) with MS.
Two out of the 9 are, to be blunt, now dead from MS-related stuff.
And I had a maths teacher with MS, who committed suicide.
We kind of avoid the whole disease issue when the rest of us happen to bump into each other. (Once literally.) A bit of surreptitious looking up and down, to see how we're progressing.
I'm at the stage where if I don't hold it all in, I don't know if I'd be able to stop crying, which is a worry.
So a support group is out. I think I'd do more harm than good.
Sorry, feeling morbid today.

[KoKo]

Hello

There is no shortage of persons with MS where I live. I know many people on a personal basis who have MS (at least 20 or so).

And these are not people from MS support groups. They're people I have worked with, former classmates, a teacher from high school, friends in the same social circles, and even some neighbors.

Take care,
KoKo