I was involved in a MS support group, and there was alot of RRMS bashers there. Someone even said that RRMSers dont really know MS, and yet all the meds out there were for RRMS, and why were RRMSers so special!!

I dont think its right that those who are not RR should try to make us that are feel guilty about it. We cant control this disease, or who gets it or the severity of it. And we certainly DO know what MS is like. Im not the one in charge of the science behind the dmd's.

I personally would love to know that there are dmd's for spms, ppms, etc. Now, Im not saying all those who are not rrms feel this way. But out of the last 2 support groups Ive been to, this was the general thinking.

We are all in the same boat. Some have been in the boat longer and have been exposed to the "elements" more. I personally would never want to "attack" a fellow MSer. Why turn on each other?

Unfortunately, it is seeping into every corner of our society; people seem to think that if one group gets more attention, then THEIR group gets less. It's not the case, most times, the ones with the most attention, get the ball rolling further & faster. That can be viewed as good for all.

Sometimes it's just about the attention...and THOSE people are never happy. Even when they get the attention.

KittyLady, just let it roll off your back. You can't make some people happy. And nobody is happy about MS (unless you consider the bean counters at hospitals & drug companies).

some of us have blue eyes, some have green. its a roll of the genetic dice. Im so sorry that you got the dirty end of the stick on this disease, and that you suffer, but the severity of your suffering does not negate the validity of mine. Im planning on looking good, and doing as many things as I can and fooling the neighbors into thinking "but she looks so great" for as long as I can.

Wish them well. send them on their way. If they disrupt the meeting, or are "flaming or causing you to feel like you dont want to go back cause someone is being mean...tell the co ordinator." snitch um out.

Here's the thing w the DMD's and the RRMS: The companies that make the drugs need a definable outcome. They need people w records that say they had, for instance, 3 exacerbations last year and 1 on their drug.

It's harder to get those definable results in chronic progressive or 2nd progressive.

Many of us who haven't had an exacerbation in many years are getting them anyway, I believe.

Those "support group" members should take their complaints to the drug companies and those that fund studies rather than to other MS'ers.

JMO,
ANN

I had an opposite experience.

I went to an MS meeting for only light MSers. They didn't want the wheelchair or scooter bound in there, to scare the newbys...Can you imagine the audacity??

Even though I was light RRMS at the time, I never went back.. What would they do, throw you out if you got worse.

We are all MSers at different places in our disease, we're not babies and we need each other.

Wow...I find this puzzling at best, and obnoxious at worst... It's like going to Weight Watchers and being jealous of those who lost 5 lbs that week and you didn't lose any...

Reminds me why I don't seem to like support groups..

I thought that once you went into spms, the meds can't help the detereoration of the neurons...hmmm.

I would of showed up with a wheelchair, all kinds of braces, a bib around my neck, pee bag and a colostomy bag on my side lol....BWAAAAAAAA


Of course I would of took it all off and said "Gotcha!!!