Neurologist at CMSC wants to change name of RRMS to "relapsing MS"

[Sunshine]

Or "Still surfing MS" for the first stage

Then, "Surfing Poorly" for the second stage.

The third stage would be, "keep the surfboard in case I can surf again"

And the fourth stage would be,"giving the surf board away" stage


I suppose we could come up with similar things for everyone's current and past hobbies.

[Howie]

LOL BBS1951, spoken like a true surfer!

[SalpalSally]

I like your analogy BBS...LOL,

[Virginia]

I think everyone could at least understand your analogy BBS.

[SuzE-Q]

But, for some, renee, for example, their first attack leaves devastating damage and limitations, even though the disease does not progress much after that.

So I'm not sure a declining "abilities" labeling would be very accurate for many either.

I just hate the word "remit" because it implies that we're "back to normal" and have recovered during those times, and that's simply not true.

[agate]

Sometimes when I tell people I have MS but am looking fairly chipper, they'll say, "You must be in remission!"

I have to bite my tongue and just tell them that I'm not. They haven't realized how little I actually do on any day compared to what most people expect to do.

Nothing like walking a mile in someone else's moccasins. Or in my case, wearing the moccasins but not walking any mile.

[SalpalSally]

But "you look so good"!

[agate]

Exactly, Sally. "You must be in remission" is definitely a variant of "But you look perfectly fine."

[jendie]

I have to bite my tongue and just tell them that I'm not. They haven't realized how little I actually do on any day compared to what most people expect to do.

Nothing like walking a mile in someone else's moccasins. Or in my case, wearing the moccasins but not walking any mile.

I fully understand about not walking a mile. I'm limited to 1 block at most, at most while using my rollator. What a life for a person who is only 47. I'm having a difficult time walking my dog.

I was sent to PT supposedly for a recommendation on mobility products and nothing helpful happened. Chart notes mention something about me falling 3 times and nothing else. What???????

I have a neuro appt tomorrow morning.

[Virginia]

Agate and others I get that so often about I must be in remission, or well you sure are doing well with it (when they don't even know me). I get so angry I almost grit my teeth.

[agate]

Virginia, some of those remarks, like "You're certainly doing well with it," are probably meant with the best intentions. I like to think they are. They're coming from people who don't want you to feel as if you look haggard and pale and sick. They want you to know that you look as well as anyone else. They're trying to compliment us.

They think we're still as concerned as they are about the impression we make on people. They don't understand that feeling well enough to get through the day somehow has taken priority over everything else for us.

Or at least that's one way to take that kind of remark.

Jendie, isn't it usually the doctor who prescribes mobility products? If the chart notes mention that you fell 3 times, I hope they mention the time--as in "fell 3 times in the past month." Maybe they're documenting your need for a mobility aid in that way?

I'm just guessing here. If you were sent to PT with the idea that you'd get recommendations for mobility products and you didn't get them, can you complain to the PT people or to the person who referred you there? I'd be upset enough about that to try to get a better result.

But maybe ask first to find out if the chart notes are being sent to your doctor, who will then talk to you about recommended mobility products. I believe it's sometimes done that way.

[Sunshine]

Yeah. I look great, but no one knows I surf with ten pound weights on my legs and five pounds on one arm. Or that I spend minimum three hours daily resting on the couch, and go to bed at 8 for more rest. or that every wave I get to my feet on is a crap shoot of whether the legs will seize up, or that the muscles of my torso will constrict like a tight band... And that taking off a wetsuit in winter sends the muscles into spasms.

[Frog42]

Or that I own a mirror so I know how I look - and it's NOT good!

[Howie]

I have a tee shirt that says "I'm not drunk, I have MS". Maybe I need one that says "I don't have MS, I'm drunk".

[SalpalSally]

I have a tee shirt that says "I'm not drunk, I have MS". Maybe I need one that says "I don't have MS, I'm drunk".

LOLLOLLOLLololol!