Are people every surprised...

[workinmammaof2]

...To find out that you have symptoms all of the time and they never know about it?

I have numbness and tingling in my legs all of the time for about the past 7-8 years. (I have had a big thoracic lesion and a couple of smaller cervical cord lesions) It varies in intensity depending on how tired, stressed or overheated I am. I very rarely talk about it because it is just normal for me. The other day, I told a friend who knows about the MS..."wow, my leg is tingling all the way up to my thigh today". she was so surprised and had forgotten that I experience this every single day...

On a separate "venting" note:
My MS is not a secret but was recently disclosed at my workplace. You can not tell, for a second, that I have it and people were fairly shocked to find out. When I told them I have the numbness/tingling all of the time, sometimes up to and above my knees, they gave me the "puppy dog eyes".

I don't tell people often mostly because I do not want the MS to "define me". This came out at work because I had just had my Tysabri infusion and the IV site had bled through the band aid and I was looking for a new one (work in a medical office). I then disclosed to several people as they were concerned that I had an IV.

May be they are not thinking about it a lot, but sometimes I feel like they are when they look at me. Maybe I am just paranoid. I feel as though I always have to look "peppy" because if I don't everyone is asking if I feel OK.

OK. that's all! Thanks for listening.

[apple19]

I know what you mean about the tingling and numbness. I have it from my trunk down to my toes and in my hands and arms. Sometimes close friends or family forget that I'm in constant pain especially if I'm sitting. To get my attention they may touch my leg or grab my hand. Then I have to remind them.

Take good care!

[KateA2]

I can relate - tingling/numbness/pain from my rear-end downward 24/7 on bad days, on good days from the knee or mid-thigh down.

Friends, family or coworkers forget that it's painful for me to stand too long at times, or they grab or playfully slap my leg or thigh when sitting next to me and YOWCH - and I have to nicely remind 'em

[3uph0riabunnyfac3]

tingling/numbness/twitching/jerking/spasming/tremors/nerve pain, can't move my hands/paralysis/migraines/confusion/lotslotslotsmore and yes, they are. I'm 24, young mom, roller derby (when i can, which isn't recently), just generally look healthy I spose...

[workinmammaof2]

Invisible...

...Symptoms! I guess most of us live with it daily.... To clarify my tingling is not painful. It's just there. Always. Bummer...

Take care!

[Special Kay]

I prefer that people not know about or focus on my symptoms, so I generally don't talk about them. I'll discuss things with one or two people I'm very close with and one or two friends who also have MS, and even then not very often. It's tiresome and I don't want to fall into a victim mindset.

Most people in my life don't even know I have MS. For the people that do know, if they forget that I have MS, I'm OK with that.

[workinmammaof2]

I typically do not tell anyone either. Happened to get disclosed at work. now i feel self conscious about it. People were very surprised to hear it but now I feel like they are always thinking about it. They probably are not. I'm probably just over sensitive.

I usually do not talk about my daily numbness/tingling at all either. It just struck me the other day that I experience this every single day...it's just there...all the time.

[DianeD]

Interesting

I found this very interesting. Perhaps it is because you are young that you don't want to share your dx with people. I might feel the same if I were young and in the work place. I'm sure your symptoms are annoying to you and since they are not causing you to appear 'sick' or 'disabled' why should you bring it up.

My symptoms cause me to exhibit signs of MS and really they can't be missed, though if I didn't tell people they wouldn't specifically say MS...to observers. I just look tired and my balance is not good.

I'm older, retired and so it is easier for me in that respect, though by no means is my MS something I want to hide.

I actually talk about it and it is amazing how many people know of someone or are related to someone who has MS. I don't talk about it to frighten anyone, but to be informative and to explain that MS has many faces. While we know people who don't exhibit symptoms, I think it's important to let folks know that MS can be different for each person.

Early on you would not know I had MS; now it is far more obvious. I just like to tell people not to judge anyone if they are showing various signs of their illness, sometimes it's so obvious and other times you will meet someone who is dx'ed but appears well.

I believe we all have an opportunity to engage and educate people. MS is complex, there are many erroneous opinions in the public. We can explain that some of us will do okay, some may worsen, but nothing is a given. Plus those who are more debilitated, or seem so, are not being deceptive. I think as people come to a better understanding of MS, they will see we can be hopeful and productive.

We have to accept MS in all it's variations and stages.

Diane

[Special Kay]

I typically do not tell anyone either. Happened to get disclosed at work. now i feel self conscious about it. People were very surprised to hear it but now I feel like they are always thinking about it. They probably are not. I'm probably just over sensitive.

As somebody once said: "You'd stop worrying about what other people think about you if you realized how seldom they do."

[MarkLavelle]

I typically do not tell anyone either. Happened to get disclosed at work. now i feel self conscious about it. People were very surprised to hear it but now I feel like they are always thinking about it. They probably are not. I'm probably just over sensitive.

I usually do not talk about my daily numbness/tingling at all either. It just struck me the other day that I experience this every single day...it's just there...all the time.

I've told my boss and the people I work with the most, and haven't mentioned MS again. I don't expect they've totally forgotten, but if I never mention it why would I expect them to keep it in mind?

I think the "24/7 for the rest of your life" part is impossible to grok for anyone who hasn't been there. I've had plenty of other medical problems, including cancer twice, and none have been as difficult to deal with/accept...

[Tawanda]

I've told my boss and the people I work with the most, and haven't mentioned MS again. I don't expect they've totally forgotten, but if I never mention it why would I expect them to keep it in mind?

I think the "24/7 for the rest of your life" part is impossible to grok for anyone who hasn't been there. I've had plenty of other medical problems, including cancer twice, and none have been as difficult to deal with/accept...

Talking about it seems to only make it worse. I try to keep the horrendous ness to myself in real life, even though I spill my M.S. guts out here at MSW!