Let's have some fun; stupid thing someone has said about dealing with MS

[Spydre]

The neurologist that diagnosed me actually said the most stupid thing to me. He told me that MS wasn't a bad disease to get because persons with it don't experience much pain. Really!!!! He's still practicing, believe it or not.

My original neuro (who now ONLY handles my epilpsy) told me that I wouldn't get any pain from my MS, either. I experienced pain from my second flare on. My MS specialist doesn't deny that it causes pain, but says I would have to get pain medication for it from my local neuro....who only treats my epilepsy...and who doesn't believe it causes pain!

I finally got the medication from my primary, who is treating my fibro, since we aren't sure if some of this pain is from the fibro or my MS.

[Spydre]

Ten years later: Are you sure you have MS? I'll bet you've never had the "hot tub test"!

H

And comment #3 was made by a Physical Therapist... who still might routinely give a "hot tub test" to daignose a person who says they have MS. (I think he wishes he was a doctor)

Here's the thing, at least with me. During the winter, I can tolerate hot baths or showers, unless I'm having skin pain. We haven't figured out why, but I'm assuming because with it being winter, the temperature in the room is colder than it would be if I had a hot shower in the spring or summer. So before the advent of the MRI, I would have had a chance at missing that diagnosis if they diagnosed only by the hot tub test!

[Spydre]

Went to the zoo with my Dad, Hubby and kids the other day and made a joke I THOUGHT WAS FUNNY...maybe inappropriate but still I thought funny

Zookeeper/Helper Lady says in front of the Flamingos...did you know that Flamingos can make half there bodies go to sleep? Do you know anyone who can do a neat trick like that?

And before anyone can answer she starts to move on...cuz lets be honest most ppl can't do that...BUT...I say, in a rather loud voice with 2 of my kids there and my DAD...

I CAN!! and she LOOKED at me. hehehe (I was in a wheelchair because walking the zoo is to much for me) So to be nice I told her I had MS in a giggle voice (I found myself funny.) Zoo lady goes...oh so sorry. I said its ok But i want to stand on 1 foot and be pink to...she still didn't smile!


isamadjul
(allyson)

Oh, wow, that's hilarious!

[Spydre]

Yep....I was told 'You should drink carrot juice because I have a cousin who's dr. told her that if she drinks enough carrot juice the MS will disappear.'
Apparently this 'cousin's' skin is literally orange.
Would I rather be orange or have MS? hmmmm....

Hrmmmm, maybe that's why the color of the MS ribbon is orange!

[Spydre]

Tell them they can trade with you. You'll work for them and they can have your MS. Sound fair?

Just before my most recent steroid run, I was having really bad spasticity down my the whole left side of my back and leg. Didn't matter what position I sat in, meds didn't work, nothing. Hubby had lower back pain and foot pain from being on his feet helping his dad side their garage. I made some comment about the spasticity, and he said, "Trade ya."

I thought back to my days when I would work 8 hours shifts on my feet, hauling heavy stuff, feet sore, etc., and instantly said, "You mean, you would want my MS to get rid of that?" He actually said yes. Evidently, since I've stopped "complaining" so much, and just "inform" him of what's going on with me, he thinks it's not so much of a problem.

[Spydre]

They are all fron my sister as the ones I posted before.
"it could be worse." hmmm thanks, thats nice! and "move on, don't dwell on your symptoms" I don't but i think feeling cold and loss of sensation for 3 months, fatigue is a little bothersome and what about not being able to see out of 1 eye? Yeah, thats just little things!
and "i know how u feel , i get tired too" sure!
And "I don't ask how you feel because I don't want to remind of it." yeah, I wish I could forget it. all of this was said in rude tone when I had a really really rough day and needed her support.

It is useless to explain anything.

Scary thing. My mom is an RN. When I was diagnosed, she learned a whole bunch about MS, and I was grateful. However, it seems to have leaked out of her head.....I was talking to her about my intractable skin pain, and she said, "You just need to get up and do something and once your mind is off of it, it won't even hurt anymore."

I love my mom, and granted, she's 67, but really? If I kept my mind off things I'll be better?

[ThisBSMS]

Yes, apparently it is that easy.

Scary thing. My mom is an RN. When I was diagnosed, she learned a whole bunch about MS, and I was grateful. However, it seems to have leaked out of her head.....I was talking to her about my intractable skin pain, and she said, "You just need to get up and do something and once your mind is off of it, it won't even hurt anymore."

I love my mom, and granted, she's 67, but really? If I kept my mind off things I'll be better?

People dont get it

[RUBBERBANMAN]

same thing

Me: I wish this creepy crawly feeling would go away. I feel like bugs are all over me.

MOM: I get that all the time too.

Me: Really??? Maybe you should be tested!

It really ticks me off when people try to make light of your symptoms or act as if they're going through the same thing.

I get that too from my sister.Says I have problems too,yeah you can relate. come on give me a break.

[dogkeepr]

I'm in need of a little humor right now, as I'm an MS patient with a case of shingles. I also have major depressive & major anxiety disorders.

1) "But you look SO good." I want to say that I look better than them & *I'm* the ill person. Or that I if they worked full time at managing their illnesses, taking lots of meds properly, sticking a needle into themselves daily, they might focus on trying to look better than they feel too. JERKS!

2) "Why are you on SSDI & have a disability plate?" Because I figured out how to fool the system. Sheesh, do people have any clue what we go through to get SSDI?

3) To a VP of company when I still was able to work... "Could you please move your vehicle. The company put in the handicap parking for me." His response, "Oh, my sister has that. i'll move my car at lunchtime." *******!

[cosake]

dogkeepr - I feel your pain. Just finished a bout of shingles myself. Not fun - that is for sure.

Take it as a compliment when people say you look good. It's better than them saying, "Boy, you look awful!" For some people who say to me that I look good, I say "MS is an "invisible" disease. You can't see the pain and problems from the outside."

I think the looking good comment is difficult to take - you want to look good, but when you look good some people won't believe how "sick" you are. Sick is the wrong word of course, because I don't think anyone with MS is truly "sick". Sick is for when you have a cold or the flu - not a description for MS.

[helenf76]

At work I was talking with some colleagues (who know I have MS) about a recent hospital appointment. A new colleague asked me fairly bluntly about my appointment and the conversation went

ME: "Oh I just have MS"

HER: "you do know that MS isn't a real disease don't you"

ME(grimacing) "How do you mean?"

HER: "Well theres plenty of research now that shows that all of these diseases that make you tired are all to do with lifestyle problems"

ME (grimacing more) " I think you mean ME not MS and I'm sure thats not the case"

HER " oh yes, most people with MS just need a better doctor and a good nights sleep

ME "weyru nfufo hdcfbi" splutter splutter "rude words"

Unbelieveable!

[cosake]

@helenf76 - I can totally understand that some people don't know much about MS (I know I didn't until I was diagnosed). There is also alot of misinformation out there even if people have researched about it.

But to basically say that MS is a fake diagnosis and changing your lifestyle will cure it is totally ignorant and rude and degrading to you and all other MSers.

[Strhuntrss]

Simple response that drives me crazy

Husband is in denial. He doesn't want to face the fact that I can not do a lot of the things we used to do. Like sitting in the hot tub together (heat intolerance), endurance running (fatigue). sleeping together at night(restless legs, kicking him and insomnia) and driving at night (optic neuritis).

His response to when I have a bad day is "That's too bad".

Simple response but one that drives me crazy.

I love him anyway

[Spydre]

People dont get it

Sometimes my husband doesn't, either. I can't count the number of times I've wanted to say "trade ya" for his complaints about back aches from overdoing it. His will go away. Mine won't.

[MomtoMiracle]

Funny thing...

I've got the major munchies from high dose steroids. I NEEDED a snack and my co-worker looked at my sweetly and said, "May I give you a piece of gum?"