RRMS vs ... Does it really have to be? (vent)
 

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. :cool: 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??:mad:

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.:grouphug:

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...:confused:

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.:confused::confused:

It's the same as a quadplegic saying a paraplegic should be thankful, at least they can use their arms and hands, be independent, In a way I agree, but it is stupid to outright feel "more special" just because you are worse shape.

Granted a Paraplegic and a person with RRMS may be "luckier" that is it...just luckier than someone that is a quad or has progressive MS. To sit there and classify us with RRMS as not really having MS is a crock....I'd stay away from them becaus eit would hurt to hear that.

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:D


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

While I don't think it is nice to make anyone feel unwelcome especially at a support group I would try to be generous to those with PPMS.

You may remember Brenda B from another board. We were both diagnosed at the same age, same month and joined the message board at the same time. Sadly MS robbed her of her life very quickly. Within a few years she had to attend adult day care and she disappeared from cyber space. In the same years I was blessed to be able to continue working full time and attend school full time as I carved out a more MS friendly career.

It is the luck of the draw but my heart goes out to all of those who weren't as "lucky" as I have been. My God I hate this disease no matter what subtype. :(

When I was in an area where I could go to a support group, they were all good. They were nice to everyone and didn't complain at anyone for anything. Wow! So I just remembered a good thing in my past, to put with all the bad memories of what illness did to me.
And Annagain, I could regale you with a similar tale about how drug companies and research firms try to categorize people with Porphyria (another disease I have). Those who have milder forms on tests (who actually may suffer a lot of chronic misery) are not even accepted by some authorities as "having" the disease at all. This makes for very difficult dx and access to treatment. Usually those in this Porph limbo eventually get a dx unless they just give up and accept chronic disability without a name. And I expect it's true in MS too, some people are having exacerbations which are not formally treated as such.
I have had MS exacerbations which I recognized, and treated myself, with the advice of Dr. Swank--get back on the diet, rest more, do not push beyond your capacity, rest your eyes a lot. I didn't even go to a doctor about these.