Can we ask to get this thread locked?
Whoever sees this, please report it as I’m not sure if I can report my own
Sonia x
I lost my job due to my first ms attack, iam practically house bound. Im not even 30 … and drum roll …I HAVE RRMS
Hi I`m not sure why you have replied here. Maybe this should be posted as a new post on the EL board.
pollx
Sorry, I meant to add, so you can receive more replies.
poll
Read first post on this thread.
Hey Anon sorry to hear about your situation x
Good on her for still running she is RRMS and young, hopefully her running and doing gym will keep her mobile for many years.
I thought at some stage everyone was RRMS, some fight tooth and nail to keep their mobility others stupidly worry about toxic side effects and refuse a DMD and wonder why they get worse quicker than others.
I have no idea if everyone will end up PPMS in the long run and I don’t think I would want to know.
I am RRMS highly active and happy to stay in denial, goto the gym and take anything my Neuro offeres me and so far he has been correct.
I feel for people who are PPMS but bi tching about someone who is RRMS who does a marathon and posting how her MS is affecting her is well out of order.
Everyone who is new to MS is entitled to post how its affecting them at the early stages.
Maybe you should not read Everyday Living as it does involve posts by every day people at every different level of MS
Least she is not posting how great smoking weed or LDN is for MS!
I agree with Sonia that the mods should lock this down now. I haven’t said a word on this thread yet, but I have found it exasperating and somewhat upsetting. I joined this forum for mutual support and to learn about the condition from people who may have had to endure it a lot longer than I have. I have already found a good deal of that on here but will be tempted to leave if the bickering continues. CP was within bounds to have his initial rant, and others have pointed out that there are other viewpoints. Enough. We are all affected by a vile condition, of whatever colour. Personally I find a lot of encouragement from hearing of RRMS sufferers who refuse to let it stop them doing ‘normal’ things. I have a good friend in just that position. Come on! Let’s support one another and not get proprietorial about our own brand of MS. [end of my rant]
I agree it’s gone on long enough but amused at how slagged off I have been for expressing an opinion…my name has been mentioned numerous times that obviously is acceptable and I am loathed lovely and all because of an opinion.
Manoon, you are not loathed at all, I just think there’s a lot gets missed on the internet sometimes and you’re clearly not the only one to be offended hun. Nobody wants you to be offended tho - we’re talking about frustration here.
The ‘anger’ some of us feel is not directed at anyone with MS but with Joe public thinking we have ‘good days’ and months/years at a time with no symptoms. Simply not true, even the ATOS lady asked me “but on a good day?” - No, this is as good as it gets, 10am is OK for me, I do have bad days tho.
I was actually surprised when recently I met with rehab consultant who was shocked I don’t have any pain killers… 11 months after diagnosis and now I find out! I didn’t call it ‘pain’, I thought it was just ‘effort’ as a lot of things are so hard to do now. I suppose the grimace is a giveaway!
When even family members say ‘get well soon’ about things that are getting worse by the day, it’s hard.
Recently, my sister said about my walking ‘getting better’, I asked her why she thought that, as it had gotten harder? She said “you were on crutches last time I saw you!” I had to exlain the crutches were just about trying to eke my energy out a bit longer, as we’d been out in the evening that time and I couldn’t have coped with a stick by that time.
Anyway, sorry to ramble, I knew so little about MS when I was diagnosed and that’s a large part of the problem, people know what they see and PPMS is rare.
It’s difficult not to get frustrated sometimes and given this is a section for people with PPMS, I’m actually pretty irked that people can be so judgemental of one of us having a bad day, and being honest enough to express those frustrations! Nobody is trying to slag off anyone with RRMS, just express some frustration at our situation!
Hobs, I’m surprised at you, not everyone gets PPMS, that’s when the term SPMS applies to RRMS’ers, when this wretched disease does start to actively progress. PPMS just gets worse from the word go. Oh, and we get pseudo relapses just for fun too.
Sonia x
Mods…are u going to close this thread, please?
pollx
Yes Mod’s please lock the thread… And gang… don’t put anymore posts on this thread… it will at least start to drop down on the page if we just stop posting. I know I just posted this… but was at top of page… Love to all, Pat xx
Surprised at what Sonia my lack of PPMS knowledge or my lack of understanding of someone picking on a newbie.
Everyone is entitled to rant or even swear if allowed at MS but why pick on a newbie who is new to all this.
Anyway if anyone want to carry on with me you know how to PM me
Ok I shall post no more on this topic.
Da end
“Relapse brigade” - nice to know what us rrms’ers are called in the ppms forum.
Darren
Ok. Being this thread isn’t going away or getting locked let me say this. Darren, and other RRMS visitors, if you read the responses to the original post you will see that we do fully understand how terrible RRMS can be and in fact how some people with RRMS can be as disabled or more disabled than most of us with PPMS. CP, who wrote the original post, was really having a rant about something we all get sick of… whether we have RRMS, SPMS or PPMS… and that’s hearing about MSers who climb mountains, run marathons etc. This is nothing new. I’ve been using this forum for 6 years and there have been hundreds of posts on this subject… every time you tell someone you have MS they will tell you about someone they know who has MS and goes white water rafting every weekend. It’s annoying… whatever type of MS you’ve got. It’s just bloody annoying! It is very unfortunate that CP used RRMS as part of his rant… and I’m sure I’m not the only person on this board who wishes it had never been said and would like to apologise to all of you who have been offended. We have people with RRMS who sometimes use this board. We have people in limbo land who use this board. We have people with SPMS who did have RRMS who use this board. They are all very welcome and always have been. Darren… the phrase ‘relapse brigade’ has never, ever been used by anyone on this board prior to this post. Not in the 6 years that I’ve been on here. In fact i’ve never heard of it before. So can all of this stop now please. WE ALL HAVE MS!!! Doesn’t matter one bloody bit what type of MS we have… it is MS and we are all in the same boat. PLEASE people… it is time to stop this right here and now. We welcome you onto the PPMS whatever your situation is, whatever type of MS you have. We have always made everyone welcome and we will continue to do so. As our requests to have the post locked have been ignored, I’m asking everyone… all of you out there whatever type of MS you have, to PLEASE STOP POSTING ON THIS THREAD. Thank you fellow MSers. Let’s put this behind us now and move on. Pat x