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Old 12-02-2009, 06:18 PM #11
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Originally Posted by Blessings2You View Post
The one that stands out in my mind wasn't the woman's fault, because she didn't HEAR me correctly.

I was having trouble getting around, and she asked if something was wrong...

I replied, "I have MS".

And she said, "Oh, I know what you mean, I'm a mess, too!"

I've now learned to say "multiple sclerosis" unless I'm sure the person knows what MS means.
That was great. made me day a little brighter.
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Old 12-02-2009, 06:40 PM #12
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it wasn't so much the comments i received upon telling people I had MS as the two comments made from a friend (who, fortunately for them, lives on the other side of the country) the day I was told it is definitely progressive. My friend calls me upon hearing the bad news and tells me how my fiance better hurry up and marry me while I am still able to walk down the aisle; followed by "I am going to get some money set aside so I can come see you before you die". Thanks Buddy, that is exactly what I need to hear after my doc tells me it's not going to ever get better! If I had the money I would have flown the 2,000 miles just to slap this person!
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Old 12-02-2009, 06:44 PM #13
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Oh and all of those well meaning friends who all have a cure for MS! Oh you should drink this (insert random OTC Suppliment), or bee stings work...well, why haven't you tried electric shock therapy? You should take Copaxone it will clear it right up! Well, thats why they make those interferons!

The best one: My mother went to a psychic who told her my grandmother (who died 22 yrs ago) says I do not have MS and all I need to do is eat asparagus, eggplant, AND sweet potatoes at least 3 days a week and I will be cured!
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Old 12-02-2009, 06:55 PM #14
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I don't know who's worse....people who don't have a clue or people who actually know a little about MS.

I spoke with a lady in the grocery store once and we discovered we both had MS. I was wearing my MS Walk sweatshirt and that got the conversation started.

She had been denied SSDI twice and was still appealing the decision. I made the mistake of telling her I was approved on my first attempt. I fully believe it's because my Neuro and PCP had such thorough records. She all but accused me of "manipulating the system". I was just as surprised as the next person that it was as easy as it was. But I surely didn't do anything to help it along. Well, nothing but have MS. She was rude and questioned me as though I was on trial. I pushed a button on my cell phone that makes the ringer sound so I told her I needed to take the call........I HAD to escape!

I'm more careful what information I share and with whom now. That'll teach me to be so talkative!
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Old 12-02-2009, 07:09 PM #15
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Quote:
Originally Posted by Kitty View Post
I fully believe it's because my Neuro and PCP had such thorough records. She all but accused me of "manipulating the system". I was just as surprised as the next person that it was as easy as it was. But I surely didn't do anything to help it along. Well, nothing but have MS. She was rude and questioned me as though I was on trial. I pushed a button on my cell phone that makes the ringer sound so I told her I needed to take the call........I HAD to escape!

I'm more careful what information I share and with whom now. That'll teach me to be so talkative!
LOL Kitty. That reminds me of many years ago when I got a part time job at a local computer company after staying home for 15 years to raise our sons.

I told my optometrist's receptionist about it and she looked me up and down and said, "How did you get that job?"

I wanted to crawl out of there!!

The thing is, they hired me because they specifically wanted somebody that knew nothing about computers. They didn't want me to tell people how to fix their problems over the phone, lol. I was there to help people and get them in to pay for repairs and upgrades.

My worst, and stupidest comment was from a PhD psychologist who was giving me therapy sessions after my dad died. I told how weak the heat made me and she said "but that happens to everyone."

She was great except for that. (And she had no air conditioning in her office.)
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Old 12-02-2009, 08:25 PM #16
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The first and ONLY time my brother even spoke of my MS he said "ya know, heat is really bad for you"! Duh! This was more than a year after I was dx and my brother knows that I research everything! I think maybe he wanted me to know that he did a little research on his own. It just seemed so silly at the time. I live in South Florida for crying out loud . I know ALL about the heat.

I guess I realize why we've called him "Kirk the jerk" for years .

Here's a better (or worse) one:

When I was in the hospital for ON this summer, in severe pain, the neuro on staff said to me "Optic neuritis isn't usually painful"!!!!!!! Idiot.
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Old 12-02-2009, 09:43 PM #17
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Definitely my manager (at the time) at work saying "Oh so you have MS? I have a friend with MS and she's just fine!".

That's great idiot, no 2 people are the same with MS and I'm in a carpload of pain, but thanks for 100% empathy and knowledge of my neurological disease.

*dripping with sarcasm*
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2004 to present - Trigeminal Neuralgia
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March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
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Old 12-02-2009, 10:01 PM #18
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Quote:
Originally Posted by joellelee2000 View Post
Here's a better (or worse) one:

When I was in the hospital for ON this summer, in severe pain, the neuro on staff said to me "Optic neuritis isn't usually painful"!!!!!!! Idiot.
If someone had said something like that to me during the height of the pain from the ON I had 3yrs ago, I probably would have whacked them over the head to replicate the headache pain, and then pulled their eyeball out with a spork and told them that's what optic neuritis feels like.

I remember reading some really old medical encyclopedia that my dad had gotten when he was younger (not sure how old the encyclopedia was) that had a description of MS...said that it was a neurological disease and that it was generally painless, or something like that.

Granted it was an old book, but geeze, all they had to do was ask an MS patient about the pain and they could have cleared up that misconception. My MS isnt even that painful yet, and I can already tell people that "yes, there's pain involved" when they ask questions about the MS.

I'm really not looking forward to the future pain that I'm expecting to get. Hoping it holds off for a looooong time.
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Old 12-02-2009, 10:55 PM #19
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Quote:
Originally Posted by dmplaura View Post
Definitely my manager (at the time) at work saying "Oh so you have MS? I have a friend with MS and she's just fine!".

That's great idiot, no 2 people are the same with MS and I'm in a carpload of pain, but thanks for 100% empathy and knowledge of my neurological disease.

*dripping with sarcasm*
Oh yeah I forgot those guys... Funny, I only knew one person with MS when I was diagnosed...but it seems everyone I know knows a guy who knows a guy who's mom's haridresser's babysitter's boyfriend has MS and they are just as normal as they can be. It doesn't even effect them at all!

Where can I get THAT version of this dang thing?
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Old 12-03-2009, 08:30 AM #20
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My brother told me he had 2 MS friends, one was in a wheelchair but both doing well. A little later asked about his friends, he kinda ducked his head and stammered that friend with mild MS doing OK, other friend killed himself. Since I've gone into a chair he walks on eggshells around me. My sister is like having an over-concerned mom, prefers I not move or do anything when she's here. Me? I have some more wine.
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