Does the Forum need a new Front End for Newbies?

Welcome and introductions
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I’ve got fed up with the Forum because to get to anything that might interest me, I have to wade through loads of newbies asking the same bloody questions! Frankly I can’t be bothered to answer them most of the time.

That or “do you think I might have MS?” We (the existing users) should not be answering those questions and are not qualified to diagnose.
Such people should learn to use search functions first and ask more sophisticated questions later. Is it just laziness or is the forum not easy enough to navigaate? We are not a human search engine!

Got used to using the “Dismiss New” button after the first scan of the previews.

Can I suggest a restructuring of the front end?
We need much better screening of newbies asking the same questions.
Perhaps a pop-up FAQ section that says “someone may have already asked this question” or a pop-up message that directs them to FAQ’s for the first month of membership?

Am I being unfair or intolerant?

Comments please…

Graeme

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You might ask that, Graeme, I could not possibly comment. :grinning_face:

It seems to me that the questions that newcomers ask are the questions that we asked too, when we were new too, and frightened and in need of being listened to.

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The advantage of the forum is that information is stored and can be accessed through search. I made use of this when newly diagnosed. I have always preferred finding things out for myself rather than asking a question. People discover the forum and ask a question without exploring it firs! I tend to only respond to posts where I feel I have something special to add.
The forum format has many advantages over the stream of consciousness in Facebook as used by the MS Trust

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The search function isn’t great I don’t know if it’s the search or the fact that titles can’t be duplicated so finding lots of info on one specific issue can be difficult.

I was one of those people too unfortunately I’ve had to stick around because my could it be ms became I have ms :smiling_face:

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All valid points, thank you.

Maybe I’m annoyed BECAUSE I did my research before asking questions. My first points of call in 2021 were the excellent MSS & MST websites & pamphlets (well, the pdf’s thereof), so got informed that way. Loads more sources out there. Prof G was essential reading :+1:

My first search was “Multiple Sclerosis UK” and the SEO team at MSS will be pleased they came up first!

So when I did venture onto the forum, I’d like to think my questions were already more informed and focussed. I see it as a courtesy to existing members to invest time & effort learning / researching. Others, it would appear, don’t!

I DO reply to newbie questions but when it’s clear they’ve already developed a basic understanding of the disease and its various manifestations.

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An interesting discussion. You’ve got me thinking 1999/2000 when I was in limboland/newly dx myself – anyone else fondly remember Jooly’s Joint?

It was a lifeline to me not because there was info on there, but because of the human aspect: to send a message into the void and get a message back from a real person who had MS was a comfort.

As far as information goes, in truth the only information I really wanted as a newbie was how soon I should get the doors widened, and there ain’t no information source good enough to answer that question. But a real person with MS taking an interest and going to the trouble of replying always meant a lot to me back then.

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Agree with you on the MS Trust Facebook ( which for some reason the Trust is resistant to making private - so it end up with lots of ‘Anonymous’ posts).

I keep reminding myself that MS is a great leveller I.e it affects people from early teens to oldies ( like myself) from all walks of life. Might just be my assumption but I do find myself wondering why some people seem to expect an answer to the ‘could this be MS’ question. Are these questions from a younger generation that is so used to social media and expecting quick answers.

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I filter out a lot of the chatter on Facebook by ignoring people who are fixated on topics that have no answers or are irrelevant. The anonymous posts get round this and often appear to be click bait or unfocused.
I worry about questions from “people” who have no reading record. Is it a bot? When the forum was more active I only read one section.

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Perhaps we need our own AI bot to give the frequently needed answers. Or could it be impossible to know, time will tell, it could be something else.

Would the admin care to look at first posts being fielded by them with stock answers pointing to good information available (if you have time and the skills to look) on the Society website? I am amazed how comprehensive the information available is, but I enjoy the challenge of searching stuff out.

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Possibly because there is no such thing as private on Facebook. The idea of a ‘private’ Facebook group gives a wholly false sense of confidentiality, so I think the MS trust is quite right on that one.

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I’m a member of a ‘private’ FB group about a hotly contested area of health and it’s forever being infiltrated by trolls, who do a bit of unpleasant trolling etc before being chucked out, sometimes after having first screenshotted and shared posts that the poster considered private.

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emphasised text

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not been on before but lots experience of MS..had it a long long time now. Very different for everyone. Have secondary progressive. Too busy to look on here before.

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I was diagnosed as a teenager and I am now 51 years old so I am not, nor should I be classed as a ‘newbie’ as you call it.

However, today, I do find myself needing to ask a question that, to me, is perhaps something someone newly diagnosed may ask. Every new symptom is like day one and every single new symptom is scary and you have that underlying worry of is there something that will simply go away as quickly as it came or is this something new is this another new normal for me and the latter frightens me.

Being hit with new weird and wonderful symptoms and despite all of my years of experience with my own MS; my work as a clinician and my many years of volunteering as an advocate and ambassador for the MS society in the States doesn’t make me an expert because everything goal persons MS is different and personal to them and you can only be an expert on your own. Even with all of my experience as a patient and as a medical professional may, to some, qualify me too respond to some of these questions but as I have just mentioned MS is a very personal journey and very different for each and every person.

After reading your contribution I am now unwilling to post my questions and concerns that I have been worrying and mulling over for the past couple of days and this is out of fear that these questions are going to clog the feed, with what, to you, maybe a basic question and something I should know the answer to.

Sadly the reality is that every symptom is new to that patient putting them back in that ‘newbie’ category. Today I have to speak with my GP and with my neurologist and MS Specialist Nurse and I have to try and explain the symptoms I am experiencing, how I have never experienced these before and now scared I am that this is going to be another new normal and a very challenging one moving forward with my life such as it is.

I came onto this forum needing some guidance and reassurance and perhaps some advice as to how I can clearly get across my concerns and why I am so very sure that they are related to my MS. I don’t know about others but I often find that symptoms can get disregarded as just ‘one of those things’ and especially ‘because of my age’ or it gets written off as being a side effect or symptom related to one of the other many autoimmune disorders I have selfishly collected over the decades which is not an unusual thing to happen however most people are lucky enough do only receive a secondary or tertiary diagnosis and do not and create enough entries to have my own section in the PDR! On the flip side of this coin I would imagine that more than a handful of you have been to the medical professionals with a symptoms that you in your gut know is not related to your Multiple Sclerosis but it is blown off as being just that and as if, because I have MS, I could not possibly catch a simple cold.

Perhaps the original poster who I believe is called Graeme could sign post me to where I should go to gain some advice, perhaps even some courage for the day ahead or simple reassurances. I was apparently ignorant in assuming that this of all places would be very understanding; after all through my many years of supporting newly diagnosed patients I have directed so many of them to the MS Society services. I truly hope that none of them have ever logged or have been left feeling dismissed as if their new diagnosis is somehow less than that of a more, let’s call it ‘seasoned’ MS patient.

I have always found it a lot easier to explain symptoms, possible causes and occasional information about prognosis with others who are having them when they come to me to discuss them but it is an entirely different situation when I am the one with the questions animals certainly the one that’s feeling the need for reassurances.

I’m hoping that it is not myself that is in the wrong place or on the wrong forum or type of forum but it is the OP that has found themselves in the wrong place and has very sadly lost a great chunk of compassion and his perhaps forgotten how devastating those initial words from your neurologist are when they say ‘you have Multiple Sclerosis’, ‘these are your limited options for treatment and management’, ‘here are some injectables you can consider, just read the pamphlets,’ and that deep seated knowledge that despite knowing very little about this disease you know that your life is just changed forever and nothing will ever be the same again for you, your children and others in your life and if you can’t get your head around what is happening or has happened to you or what you have just been told how on earth are you going to get someone else to understand it and support you when they to are going to need support. Which of us is worthy of asking those difficult questions; what is a criteria and length as to how long you must have lived with this before you can ask these questions.

I am very sorry if my post is direct and I know way mean it to be dismissive to anybody but as mentioned early on I logged on as a veteran MS’er, read this post and got set back all the way to when I was a teenager and those words that have never gone away in the same way the disease is never going away were said to me. I must also confess that I am extremely upset that I have directed people to this and other forms similar to it for the support I came looking for today and I hope in my heart of hearts that this was not their experience and that they were met with kindness, concern and compassion.

Lena :orange_heart::sunflower:

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Hello Lena
I really don’t know what to say!
You are not, by any definition, a newbie.
You have had a diagnosis and researched your condition as it has developed and have an ongoing dialogue with your MS team. Any issue you might present on forum will be sophisticated, informed and full of empirical context.

You are being far too literal and are most welcome on this forum. As are all people living with their diagnosis.

Please re-read my original post. The “filtering” of newbies that I was suggesting refers to people who register and log onto the forum who have not had a diagnosis by a neurologist and clearly have not done enough research into MS on their own account. Such people would do better to actually read some of the definitive articles & pamphlets about MS and how to go about getting a diagnosis from a professional before venturing onto a forum populated by individuals such as us. To ask the forum, made up of non-clinicians for aspects of a diagnosis could be regarded as intrusive and burdensome, would you agree?

Graeme

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Hi GCCK

For what its worth, I think you are being intolerant; however I am sure your post will be caused many newbies to leave the forum entirely so that should reduce the number of unsophisticated questions you have to put up with.

You are right in that the vast majority of us are not medically qualified to answer specific medical questions, but we can share the experience of our own MS journey/issues, and provide a virtual ear to listen/shoulder to cry on. We can offer empathy and compassion to a scared person facing or having a new diagnosis of MS.

It doesn’t hurt to be kind to a newbie of any description, diagnosed or not, we can point people in the direction of good sources of information for personal research, the MS Societies information pamphlets, reputable medical papers etc. with good grace.

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The most anxious I felt as a " newbie " was when I was dismissed by my GP when I raised the possibility that I may have MS and was diagnosed with depression/anxiety.
I had private health care via work and arranged a private consultation with a Neurologist and subsequently had an MRI.
Numerous lesions were found in my brain and the largest was on my c spine.
I was then diagnosed with “probable MS” as I didn’t meet the Mcdonald criteria for dissemination in time.
My neuro said it couldn’t be anything else other than MS and he thought I had had it for years.
I’m so glad I went on this forum and Shift MS whenever I’ve needed advice and reassurance especially when I was in limbo land.
I was officially diagnosed with MS 3 years later and value the help I’ve received from all the contributors here.
I’m not sure I would have coped as well as I have without that help or reassurance.
Kindness goes a long way and costs nothing.

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Certainly agree with you about the value of the Forum ! Having compared with some MS Facebook sites I do think that the discussion on the Forum is much much better, better informed and focused on real issues, symptoms worries.

( I went off one Facebook site when one of the discussions was about getting drunk/ celebrating 8 hour pub crawls and ignoring advice from an MS Nurse to cut down on the alcohol to which the response was ‘well that’s not going to happen’)

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You can do all the research in the world but sometimes just asking the question and getting a response from a real person living through it can be more helpful and makes you feel you’re not alone. I’ve looked up lots of symptoms/issues on here and some I’ve posted about and when you read the words ‘yep me too’ it makes me feel just that little less anxious. The whole point of this forum is to bring people together who really don’t want to be here but feel that little bit better for its existence.

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