This Is MS Multiple Sclerosis Community: Knowledge & Support

I have only been diagnosed with MS for about 6 months but I'm only 15 so it feels like much longer. I have told only a select group of friends and my family. I was wondering if anyone has any experience with whether or not I should make the fact that I have MS common knowledge or if I should just keep it to myself..
Would really appreciate replies x

Hey - I see you haven't gotten any responses, sorry about that, new here myself. I was a senior in high school (17 years old) when I had my first MS symptoms. I had more attacks through college, through all of this I only told people I thought needed to know, close family, close friends. Some of my friends still have no idea (I am 24 now). I just thought it was really none of their business I guess, I didn't want to be labeled or thought of in a certain way by people who hardly knew me. I think its totally up to you and whatever you are comfortable with really. That is how I dealt with it myself. Hope that helped at all, or that youll even read this.

No, I am very grateful for the reply and it's always good to get other people's opinions on these things. Having written the post I decided that this is not a part of my life that needs to be common knowledge and I would hate to have told people and regretted it. I can pretty much live my life as normal and it only really affects me when I miss school for hospital appointments, but I do sometimes feel like I should talk about it more. It's a bit taboo between me and my friends.

I had the same experiences, I live a relatively normal life, you cant tell from looking at me or anything that I have MS. My only real symptoms to date are fatigue, so I should be greatful I suppose.

I think this is a good place to feel free to talk about it with others, people who know what you are going through too. My mom actually has MS too, so I was able to talk with her about it when I needed to, without that I'm not sure where I would have turned, but this site seems ideal for discussing it.

I never got into the details much with any friends either, just let them know what was happening and that was that really. It did not come up very often after they found out so I think what youre going through is normal. Its hard for people who don't know what MS is all about to understand really, so I never expect them to, you know.

Just try to live life as normal as you can I think, enjoy every day as much as you can.

MS is only a small part of you. If it isn't relevant to your situation you don't need to mention it. Because people - especially strangers - immediately think "wheelchair". Actually I forget I have MS most of the time, except for my jab every night. When it pops up I think, oh, there you are again, I have been overdoing the stress.

There are times you have to come clean. Family and close friends have to know, because they see me on the bad days. In the sport studio I tell the guy, this is why I am not actually getting stronger, in fact I am pleased not to be getting weaker. He is very impressed by this! At times where everyone is working hard - this week is fest in our village and there is a great deal to do - you can say, "sorry, I have a stupid nerve disease and I can't do this for long, can't do the heavy stuff, have to go home early". Try not to say MS, say "encephalomyelitis disseminata, a rare condirion of the central nervous system". That is the truth but has no wheelchair attached.

If MS does not affect your work do not mention it there. Do not mention it in job interviews unless it is relevant (if you are a forklift truck driver then think about retraining!) As long as you can drive safely you can keep you licence (this does differ from one country to another).

I am glad you are being positive about this. I know MS people (and not just MS) who don't do anything else. It is their life's content, their constant excuse for not doing things, their reason for every failure. You just stay the way you are.

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Bibo ergo sum

I was just diagnosed last Thursday with MS. Yay. I've read a lot of peoples views on telling others, and I can say that as soon as I found out, I told the world. And it was freeing. I got on Facebook and said, "Damn, I Have Multiple Sclerosis. It's now a part of me, and why would I want to hide myself from anyone? My friends can talk to me about it, ask me questions, and in return, I can make them more knowledgeable and passionate on the subject. I have a wonderful roommate who came to visit me in the hospital every single day I was there. If I hadn't told her, I would be so lost and overwhelmed. It was easier for me telling everyone because now they KNOW. Now I have have more shoulders to lay my head on. I have more support then I ever thought possible. But like I said, I would never want to hide myself away from people. Hiding something like this would have made me feel ashamed. And I am NOT ashamed of any part of myself. To each his/her own. Good luck with everything!!!

hu guys well im 28 and interested what where your first simptoms did you do lumbar punction for a dg Ms, im awoiding my frined because they can see im different and i think that nobody could understand it....

I am certianly not under 25, lol... but here is the way I view your question... It should be on a "need to know" basis. I personally only told my family and 2 very close friends whom I could trust to keep it to themselves.

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w/m 44
The problem comes with the decision of weighing the unknown with the unknown.

I was diagnosed when I was just twelve and its already been ten years, dang. Let me tell you what I learned about sharing with friends about MS.

First of all, you are going to know right away who is your friend and who isn't and that is probably the best thing about having MS, you learn so much about people!

When I was first diagnosed, I didn't tell anybody, even within my family, it was rarely spoken of. My attacks were pretty bad the first couple years and I didn't want to talk about it ever. I had a hard time moving away from that, during high school, it was like my dirty little secret, I think I told three people. It was horrible, I don't recommend that, I was very sad and bitter most of the time. Its funny how, at that age, it is so hard to be different because right once high school is over, being different makes you who you are- someone people are interested in knowing.

Once I got to college, it was a clean slate and I decided to embrace the fact that I have MS. My friends and roommates were incredibly accepting and it made a world of difference. I started to develop into the person I am and I'm sad I didn't realize how to do so earlier.

I'm still a private person and I don't just tell everyone in general conversation but if it comes up, I'm not afraid to speak up. The way I look at it is, its not a secret and its better than having people talk about it behind your back. It took me ten years to learn that though, I'm still careful who I tell and how I tell them without giving away too much. Over time, you'll learn what works best for you. How I usually bring it up when someone asks or I feel like it is time to share with them is like this, "I'm not sure if you are familiar with it but I have MS."

Anyway, good luck, hope it helps and sorry it is so long!

Hi, my name is Matt and I am 20 years old, just diagnosed about a month ago. When I first found out I wasn't even sure if I was going to tell all my family let alone friends. It kind of depends on your level of comfort with yourself, the disease, and your family/ friends. I'm pretty comfortable with everything so all my family knows and I told all my close friends over the phone, didn't think a facebook bulletin was appropriate LOL. I did tell ALL my friends, just the close ones from work or growing up in school. I just didn't feel like everyone had to know, so I would say of all your friends, tell your close friends who you talk to on a pretty regular basis, I always started my conversations with something like "just have something that I should tell you, I don't expect you to know how to react to this so it's no big deal" and then I would tell them that I was just diagnosed with multiple sclerosis and I would explain to them what MS is.

I am including a link to an article I wrote about MS on my blog, I wrote it for readers with little to no medical knowledge, my intentions were to give my family and friends something to read that they could understand so they would understand my disease and what I'm going through, maybe it will help you too since I wrote it in simplest of terms with simple examples that anyone should be able to grasp, good luck!!!

-Matt

http://mattsms.blogspot.com/2010/09/so- ... rosis.html[/i]

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http://www.mattsms.com<br />

Hi,
Im new to this, have never done somthing like this before..
When i was 19 i was told i had a 50% chance i had MS, but they had to wait and see further down the line..
Now recently turned 23, it has been confirmed that i do.
I have only told my partner, apart of me is scared to tell anyone else, as i dont want people to look at me and think
"shes sick" or anything like that...
I look completly normal thou.
Was wondering if its just me who is thinking like this, about telling anyone ? Or is it just a natural thing?
Also does anybody else experience severe leg cramps ?

hi emma, welcome to the forum. as you can see, it's not a terribly active one. but we do have people here on the board who are in your demographic. if you don't get an answer here try posting in 'introductions' or 'general discussion'.

as for the leg cramps - ever had a serum magnesium test done? yours could be low, many folks with ms have lower magnesium levels, bottom of the normal range, while healthy people sit in the top end of the normal range.

anyway like i said welcome to the forum. glad you found us

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com