What do you say?

[Lexie]

What is a short answer when you tell friends you have MS and they ask what are the symptons. All that crosses my mind is fatigue but everyone has that every now and then. I just want a short relevant answer that will help people understand without going into detail. When I see these people I am out and having a good day so I look perfectly fine. Thanks!!!

[techie]

It doesn't really explain anything but it's a happy answer too
techie

[Alicious]

Originally Posted by Sparky10

Not many people will say "Me too!" to suddenly becoming weak or paralyzed.

This cracked me up. We may as well get some giggles out of it.

[valeriem2220]

Good question.
All I can ever think of at the spur of the moment is dizziness/vertigo....

[Lexie]

I love the short circuit one! I know in this small town I live in that would be repeated as a brain tumor or something.

[cosake]

I have alot of "hot spots" and annoying tingling sensations in addition to what I call "body fatigue", even though I know there is no such term. It's my body that is exhausted and muscles hurt - not fatigue where I just feel tired. I also have bladder issues. Once I say that - most people don't ask too many more questions about symptoms.

[zilphia01]

I usually say, "It makes me go blind". that usually answers them, since I present with ON. Or "Sometimes I can't walk without a cane."

[Cat Mom]

Sometimes you have to tell people you have MS even when you would rather not. Like when I don't want to appear rude or disrespectful by canceling things last minute, turning down invites, etc. or anti-social because I can't stay up late enough to watch kids sports.

This is my suggestion even though I like the short circuit the best...

My brain and spine can't communicate with my body as the nerves are damaged and it affects every function of the body.

[jbell2435]

I will ususually just come out with the MS, how else do you explain the walking, but that is only people that I know. If I don't know them, I just say I have nerve damage in my foot/leg.

I haven't had too many people ask about what are the (my) symptoms, but I am going to a conference at the end of May and have worked with these people for 11 years...

Last conference was last August and everyone knew something was wrong and knew I was going to Mayo Clinic in September so I expect a lot of questions in April. Not really looking forward to that.

As for answering what are symptoms, if I tell someone it started with vertigo they get freaked out "omg, I have vertigo", so I have to explain it doesn't mean MS, etc.

Leg weakness and foot drop, dizziness, imbalance. Ugh, all seem to evoke more questions. Thankfully my fatigue is no more since the Ampyra!

Good thread, I can't wait to read more responses to be prepared!

[TLC_31]

If you look “perfectly fine,” as I usually do myself, why are you telling them you have MS? I’m all for being forthcoming, but I don’t think MS (or probably any disease) makes you a different person. I’m not ashamed of my MS or anything, but aside from closest friends and family immediately after diagnosis, I rarely mention it to people out of the blue.

Unfortunately, sometimes the symptoms do make each of us a different person. I’ll let the symptoms (relatively mild in my case) do the talking when they present themselves. If someone asks why I seem to be limping, or why I don’t want to climb a ladder and clean off my roof, or why l like my home or office cooler than most everyone else, I’ll say I have MS, and that one of the ways it affects me is ....

Occasionally I'll get the surprised, "Sorry, I didn't know you had that," and I just say I try to not let it define me. I tell people I'm happy to talk about the disease and answer any questions they have, but that it doesn't affect me terribly, at least not yet.

The “short answer” you seek, however, may simply be that your nerves are sometimes short circuited, and that various body senses and functions don’t always work correctly when you want them to.

[Bob698]

Originally Posted by TLC_31

If you look “perfectly fine,” as I usually do myself, why are you telling them you have MS? I’m all for being forthcoming, but I don’t think MS (or probably any disease) makes you a different person. I’m not ashamed of my MS or anything, but aside from closest friends and family immediately after diagnosis, I rarely mention it to people out of the blue.

Unfortunately, sometimes the symptoms do make each of us a different person. I’ll let the symptoms (relatively mild in my case) do the talking when they present themselves. If someone asks why I seem to be limping, or why I don’t want to climb a ladder and clean off my roof, or why l like my home or office cooler than most everyone else, I’ll say I have MS, and that one of the ways it affects me is ....

Occasionally I'll get the surprised, "Sorry, I didn't know you had that," and I just say I try to not let it define me. I tell people I'm happy to talk about the disease and answer any questions they have, but that it doesn't affect me terribly, at least not yet.

The “short answer” you seek, however, may simply be that your nerves are sometimes short circuited, and that various body senses and functions don’t always work correctly when you want them to.

I've been dealling with this for a while and the best answer is no answer.
Think about it, it takes us a while to figure out what's going on and we're the ones who have to deal with it everyday.
Most "normals" won't get it, no matter how we try to explain it. Early on, I told a bud who works construction and he started crying. I wound up having to tell him that I wasn't planning on checking out anytime soon.
Then, you've got the "Oh ****, that's nothing" crowd who will tell you all about their trick knee.
If you mention the word "neurologist", you can count on people thinking "His doctor thinks he's crazy" but the one reaction that really got me was the folks you see a month later who can't believe you aren't dead yet, so you were either faking or else you got cured.
Outside of meeting other folks who have MS, the one bud who truelly got it was the guy who's had diabetis since we were kids.
I told him and he came back with "Welcome to the world where you're always stepping on the banana peel. What do you think I've been dealling with all this time?"

[jjs]

Originally Posted by Bob698

I've been dealling with this for a while and the best answer is no answer.


Think about it, it takes us a while to figure out what's going on and we're the ones who have to deal with it everyday.
Most "normals" won't get it, no matter how we try to explain it. Early on, I told a bud who works construction and he started crying. I wound up having to tell him that I wasn't planning on checking out anytime soon.
Then, you've got the "Oh ****, that's nothing" crowd who will tell you all about their trick knee.

If you mention the word "neurologist", you can count on people thinking "His doctor thinks he's crazy" but the one reaction that really got me was the folks you see a month later who can't believe you aren't dead yet, so you were either faking or else you got cured.
Outside of meeting other folks who have MS, the one bud who truelly got it was the guy who's had diabetis since we were kids.
I told him and he came back with "Welcome to the world where you're always stepping on the banana peel. What do you think I've been dealling with all this time?"

Bob, just wanted to say I appreciated your answer here.

And to all ... I am sure this has happened to some or all of you too?? My close friends know that I am struggling and doctors think I have MS and now it seems they are afraid to ask me for help. Also, they ask my children a lot "How is your mom feeling today?" "How has your mom been doing?" and so on. (my children are 14, 16 and 18, so they are well equipped to answer, but it's just funny how other people handle it) I used to be the one that others would call on for this or that, but now they hardly ever call on me. I appreciate their concern ... but I'm trying to find a way to convince them that really they can treat me as they did before and if I cannot handle something, I'll just tell them so. I have no problem with blunt honesty!

This is a good post ... I am enjoying the responses.

[muse_7]

I have never hidden the fact that I have MS from anyone. Because I think that people need to have more awareness of this disease. And what surpises me is that when I talk to peole about it I find either they know someone who has it, they have it themselves or there is another medical condition like lupus or RA that they have or someone they know does.

It kind of freaks me out to see how many people are sick but at the same time I can see the relief that they get to talk about it with someone who would understand.

As for how to explain how it feels - The best I can describe it is like the worst flu you have ever had. With the weakness, the overall achiness, the migraine, intense fatigue. Then throw in fun stuff like spasms, tingling, electric shocks and numbness, falling, eyesight and cognitive problems. Of course that doesn't come close to all of it but it kind of gives people something to reference.

At the same time though I don't think anyone can really understand how it feels because unless you experience it yourself there really is no way to know how lifechanging it is. My dad has PPMS too and I never knew how bad it was until I got it too. And then I couldn't aplogize to him enough that I didn't really understand how hard it has been for him the last 25 years.

But it also comforts me in a strange way because he has lived his life despite the MS so I know it can be done. I guess everything is in how you look at it.

[MarkLavelle]

Originally Posted by Lexie

What is a short answer when you tell friends you have MS and they ask what are the symptons. All that crosses my mind is fatigue but everyone has that every now and then. I just want a short relevant answer that will help people understand without going into detail. When I see these people I am out and having a good day so I look perfectly fine. Thanks!!!

My main sx is paresthesia, so I usually just tell people my nerves are messed up and everything I touch feels wrong. If they are technical-minded (like me) I tell them that my skin has a bad signal-to-noise ratio. That's what I told people before my dx and I'm sticking with it!

I generally don't mention MS except to long time friends and people I work with every day.

[Lexie]

I don't mention MS normally either unless I am asked. I made the dreaded mistake of telling my boss because I thought I owed her that and it has been the worst thing I could have done. So much for being honest! Living in a small town, word travels fast!