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MS Matters mag... negative comment of PPMS!

Got my MS Matters mag this morning. There’s a very good article of the novelist MJ Hyland who has MS (actually her books sound great & I’m going to order one).

Doesn’t say what type of MS she has but she’s been in a trial for Alembuzumab… so I assume she’s RRMS.

Anyhoo… at one point she says (quote) "I was terrified that I might have primary progressive MS,’ Hyland says, ‘that I wouldn’t be able to write another novel.’

Now of course I do not doubt that that was her fear & like many people she is misinformed about PPMS… but wouldn’t you think the comment would have been edited out… or at least a footnote to say that PPMS is different for everyone and is not necessarily the ‘worst MS’.

Perhaps I’m being over-sensitive (& perhaps unrealistic) but seems an insensitive comment to put in an MS mag that people with PPMS read.

Comments on a postcard please…

Pat x

Hi Pat

Haven’t read my ms mag yet, but totally agree with you about

that comment.

In one way I think cos our’s is there everyday, albeit better some

days than others, I think I find that easier to cope with, than not

knowing when a relapse was going to make a hit, if that makes any

sense.

In the end we are all in the same boat with a crap illness, and we all

do whatever to make our lives easier, but I think the people at the top

should edit remarks like that.

Take care, no rain, sleet or snow here today.

Pam x

Hello Pat.

This shows a few things. The novelist is a bit naive about PPMS and could help herself with a little more understanding of it. Those around her doing the diagnosis and prognosis could perhaps have elightened her a bit more about the bigger MS picture. Thirdly the MS Matters magazine have been quite remiss in letting this rather insensitive comment get through. Was it proof read? Was it rushed through? No doubt one of us will leave the magazine in no doubt about the negative slant apparent in this article.

Take care, Steve Mc

I thought the same when I read it Pat. I do find that on here people often say how glad they are that they don’t have PPMS and that things could be worse! I think many RRMSers know little about PPMS and pity us dreadfully. I wish they were better informed. It gets me down sometimes! Teresa xx

Yip! It’s portrayed as ‘no hope/we’re doomed/we’re doomed’ if you get the PPMS sign around your neck but here we are here for each other alive and kicking (I can’t actually kick but mentally I can!)

There is hopeM

Hi Pat, this one will get your dander up…maybe I have told you this before.

When the first neuro told me I didnt have MS, back a couple of years now, I asked what made him say that, his answer was this;

If you did have PPMS after all these years, you wouldnt be able to have this important conversation with me now.…inferring that anyone who had had PPMS for some time, would be gaga!

The very idea! His name rhymed with s…house!

luv Pollx

Good God Poll !!! Un-bloody-believable! Yep that got my dander up alright!

To think they get paid a fortune for coming out with some of this sh*t! (no wonder his name rhymed with it lol)

I think all medical students studying neurology should have coming on this forum and reading posts as part of there course!!! A lot of them seem to forget that beyond the lesions and the symptoms there are human beings…

Rant over…

I did a silly thing today. Didn’t feel at all great but the sun was shining & a friend was here and I forced myself out thinking I might ‘perk up’. Bad decision. It was one of those days when everything was in speeded up mode and I was in slow motion. Colours were so bright they hurt my eyes and noises were hurting my ears. By the time I got home I was freezing cold and close to tears.

Oh well… was my own fault. One of those times when I wasn’t listening to my own MS.

Never mind, all cosy and quiet now.

Hope you ok Poll and everyone ok and have nice weekend,

Pat xxx

Hi pat got it but not got round to reading,does sound bit sloppy not to be edited out couple of issues ago they made big noise about dedicating whole issue to ppms as well and give more coverage to us ‘poor unfortunate people’ Be well Steve

Sorry that you’ve had a bad day Pat. Look after your MS tomorrow and have a really restful day. Teresa xx

Hello Pat,

Even though i have RRMS i’ve got to say that i was shocked to read such a comment in a magazine published by the MS SOCIETY.

I was expecting a backlash about it on here so am not surprised to see your post.

I would imagine anyone who has PPMS would be offended by the remark.

I can only say that i hope a mistake like this will not happen again. Perhaps MJ Hyland’s article was not checked as she is a Novelist and they thought it would be correct.

I would expect to see an apology in the next issue at the very least.

Teresa.x

Hello everyone, thanks for your comments above on the recent MS Matters article.

We’re sorry if the comment about the fear of being diagnosed with PPMS made by MJ Hyland in her interview in MS Matters 107 (Jan/Feb 2013) offended any of our readers.

The article was thoroughly checked, as is everything we publish. We don’t edit out personal opinions or comments as a rule, and we don’t think that most of our readers would expect that we should. Neither MJ Hyland, nor the MS Society sought to cause offence - the article simply reflected her honestly held fears about her diagnosis, which many going hrough this difficult time may share.

Given how different MS is for everyone, writing a magazine about the condition for all people with MS is a challenge. We try to achieve a balance of articles covering the broad spectrum of experiences, including those living with PPMS. We don’t pretend to always get this balance right, but we do our best.

Ultuimately, it is your membership magazine, with all of the interviews done by people who have MS, so we’re always happy to recieve constructive feedback. We’d like to seek your permission to run a selection of your comments on the piece in the next issue of MS Matters, as we’re keen for everyone’s opinions to be heard. Please let me know if you’re happy for us to do this.

Sarah Westlake
(Senior Editor at MS Matters.)

Have to echo what Treek says, I’m an rrms’er when i was diagnosed with cis awaiting next appointment with neuro my gp told me it looks like ms, but not to worry because it looks like the less serious type of ms. But didn’t go into detail what they ment by that. They prob said that to keep me from worrying but ms is ms no matter what name they call it.

Im glad they don’t edit peoples views so we get the story warts and all,

Darren

Hi Sarah, thanks for your post.

I hope I made it clear in my post that the article was good and in fact I’ve now bought a book by MJ Hyland and look forward to reading it. Her fears of course were genuine… but I think it’s difficult for people with PPMS to read comments like that.

However I’m very happy to have the post printed in MS Matters (if others agree?).

It’s good to open up these things for discussion.

Thanks again for your post… I want to add that I always like reading MS Matters… in fact I read it cover to cover.

Pat x

The thing I found most peculiar about her experience was that her description seemed to me to indicate progressve MS rather than RRMS. She didn’t talk about relapses, that I recall, but a lot about the ongoing and increasing problems with her hands.

True, it didn’t say what type she has been dx with.

I know not everyone is comfortable with having these comments published & although a public forum we do sort of think our posts are just between ourselves.

If anyone is not comfortable with the comments being published please post or pm me… after all we can say no.

Pat x