How To - helpful hints

Hi Dawn, sorry for the belated reply. I have been trying to learn how to navigate the site and it has gone slowly so I am a more of an occasional viewer for now. When I first had my full blown stroke, if you can believe it, was misdiagnosed also. When they did the ct scan and MRI, I had what appeared as a large mass that was involved with 3 different lobes of my brain. They also saw blood. They diagnosed me at that point as having a massive brain tumor. 3 to 4 weeks later after a few TIAs and several more scans. they realized that I had a ischemic stroke that eventually ruptured causing the large hemorrhage they thought was a tumor. So, your frustration at being misdiagnosed I completely understand. As Bear mentioned above, at 48 and a generally healthy non smoker. I also didn’t “tick many of the boxes” although I was overweight at that time. As it is now 10 years since my stroke, I can tell you that given some time, your frustration will likely ease and eventually be no more than a bad memory. As best you can, concentring on moving forward may help you as it did for me. Expressing your feelings is so very important and that will always be true. I have been amazed at how helpful this forum has been since i joined a month ago. I hope you find comfort here and keep posting with any and all your feelings.


If ever you need help with getting to grips with navigating the forum, just lets us know on here. There are a number of us who would be only too happy to help you out. And think @SimonInEdinburgh is also about to offer the same :laughing:


Hello @Dawn55
Sorry I’m a bit late in welcoming you I was on an enforced leave of absence

I hope writing down your experience has given you some catharsis, possibly some clarity and allows you to come more to terms with your new reality . Often recovery is aided by grieving your old self and accepting you and family on a new path now and considering how to make the best of it

There are in fact many many many posts here with similar stories. I had several years of unsatisfactory conclusions from my GP. when I finally had an MRI they didn’t tell me until the neurologist almost let it slip “oh you have had several strokes I see in the research notes for the project you’ve joined”. I went to a&e early for the event that hospitalised me and I still didn’t get thrombolysis. As others have said “they can only diagnosed what they can detect”

You must of course do what makes you feel right in following up. Its Definitely true that injustice affects people even without a stroky head and after a stroke emotional balance can be way off - things that would cope with upset us more. You should consider how much upset trying to prove misdiagnosis could generate

If you going to take on a system like the NHS you will have to have a lot of stamina and a reality I have is the stamina and motivation and everything else still needs to be reserved to recovery even at the 3-year mark . It’s very possible that there was no incompetence just that there was no definitive evidence amongst many possibilities.

It would be good if we can change the approach to always assume any symptoms that fit a stroke - and that definitely isn’t FAST as per the acronym - are treated as if a stroke .

I hope you have read the welcome post flagged above - it has both some collected wisdom and pointers to where other forum members have recorded great posts over the years - I would definitely recommend reading around because there is so much applicable common sense distributed amongst the many posts here in program

I wish you well in your journey




@EmeraldEyes over a month ago I started trying to write a post on this topic and then because of my forced months absence I couldn’t get to it to edit it! I haven’t yet been brave enough to look at it since getting back in

I have found it to be extremely difficult to write clear instructions about how to use this site

I have/will of course make it a wiki and I’m hoping that folk like you will add clarity :slight_smile: -

Would you believe that there is nothing in the discourse documentation set that’s actually just immediately referencable! The published documentation from the authors is at documentation - Discourse Meta but it isn’t complete nor is it particularly easy to find or read



I might just add that when I joined the forum there was a basic & more advanced tutorial available to work through. I worked through these & they helped me navigate the site.

I assume they are still available & would, in my opinion, be a good place for people to start.

The other thing I do is just try on the grounds that you need to know a lot about what you are doing to be able to cause any damage. Most things are fixable. Good job really as I often make mistakes :rofl:


If you’re talking about what I think you are… Then
Yes they are available…

if people read the message that they get from @MSG-bot

But out of 29,000 (sic) sign ups we currently have 35 yes, thirty-five - sic people who have done the basic tutorial and 16 who have done the advance.

Tutorials aren’t really navigation & their intro mesage hasn’t been tailored at all from the out-of-the-box software - Which reflects a number of sensitivities from the software world but aren’t very applicable here - imho making them applicable to us with a very different use case that involves empathy rather than conflict is a responsibility the original holders of the moderation role should have addressed at launch (& is ?overdue¿ :slight_smile: ! )

To recover them (1 way among several is)

  • click your avatar / picture
  • Click the envelope icon
  • Scroll down to your very first message from Stroke Association (MSGbot) with a title of “greetings” and follow the instructions in that message (IE bookmark the topic - that’s the trigger for the tutorial to start)

Or You can
Search users for MSG bot and message it as if it were a user and then type
start tutorial
start advanced tutorial
Also try @MSG-bot display help
This generated the next reply from MSG-bot below

Creating a private message will save flooding this one with people trying out the tutorial

The 2nd message from MSG bot has the heading “now you’ve been promoted…” Which I can’t be sure but think you get on promotion to member (or maybe basic)

The 1st of them doesn’t cover navigation per se it starts w/ legalese/ operation and is actually VERY perniquity about the format of putting a link on our line - you need at least one line before the link and maybe one line of text after the link to make the tutorial show you the second page - hardly intuitive or easy to use! Again aimed at software programmers perhaps ?

I think we can/ should do better


I currently know how to do the following things:

@msg-bot start {name-of-tutorial}

Starts an interactive tutorial just for you, in a personal message. {name-of-tutorial} can be one of: tutorial, advanced tutorial.

@msg-bot roll 2d6

:game_die: 3, 6

@msg-bot quote

:left_speech_bubble: There is only one happiness in life, to love and be loved. — George Sand

@msg-bot fortune

:crystal_ball: You may rely on it

1 Like

And in fact, these ‘how to’ replies should really be split off from the post so as not to confuse. Maybe that’s something @CommunityAdmin could do at some point. It needs to be split from here onwards I feel so angry as I was misdiagnosed - #15 and put in a new thread.
It’s times like this I wish I had the permissions to do it myself :roll_eyes: And I’m the one who took it off-topic really :confounded:


In fact any moderator :slight_smile:
luckily we have one who’s still active…
Please you would oblige :slight_smile:


Hi Doug65,
Welcome! If you need help using the site you’ll find some videos and other information on this page Frequently Asked Questions | My Stroke Guide you can also click on the question mark icon in the bottom right of the screen and ask a question such as “how do I post a new topic” or similar.
If an answer doesn’t pop up in the results, fill in the form for one of the team to help you. We will then create a “how-to” answer for the next person who asks the same question.


@SimonInEdinburgh @EmeraldEyes

I have split the topic as requested. Hopefully it has worked ok. I’ve never done it before - 1st time for everything :grin:



Looks close enough :slight_smile: maybe the first post here should have been left there but it probably doesn’t add up to a hill o’ beans either way :slight_smile:

Gets easier with practice :slight_smile:

[or guidance!] - Have you had help taking on the role? Eg What Role Descriptions, Guidelines & Training have you received?

And been involved in creating or reviewing / or are aware of
( for all the roles such as mod. & member & staff & admins? )


Hi Simon,

I did debate about leaving the first post but decided to move it as Emerald Eyes post referred to it.

I’m probably a bit rusty on some things as my memory is not what it used to be & if I don’t do something often I easily forget. :thinking:

When I agreed to do the moderator role I did indeed work through / read through some guidance.

The main part of my moderator role is, as I understand it, to approve / reject new users, review flagged posts & a few admin type tasks like splitting posts, editing them if necessary etc.

I don’t have the same level of permissions as people like Alex or Clement as I don’t work for the Stroke Association. I carry out this role on a voluntary basis around my paid employment. I would add i’m happy to

In relation to guides, forum changes etc I get the same opportunity to comment as all other forum users.

Enjog your evening.




I’ll say it again, as I’ve said before, your input is valued and appreciated.
Thank you Ann.

Keep on keepin’ on
:writing_hand: :smiley: :+1:

1 Like

Thanks Ann
And thank you for your continued efforts alongside your job and I know that you’ve had some challenges with your mum breaking was it a hip :frowning: and do I recall dementia from DS or am I just experiencing a confused strokey brain - that would be likely because my current stress is disrupting sleep and quite a lot more.

I can see a case either way for the first post in this thread staying there and being here :slight_smile:

I’m a bit surprised that you say same opportunities as other forum users as a mod! Have you in fact had any opportunities? I’m unaware of ever having had opportunity and I’ve asked for them

I’m aware that you’re a moderator rather than an admin.
Were you given the discourse moderators guide

Do you think it is appropriate for our forum? I think its tone is authoritarian & mechanics rather than What we need is a mix of empathetic tolerance with the mechanics

Thanks for your wishes for the evening - it was my daughter’s birthday yesterday and we went to a sushi bar where we were pleasantly surprised by the quality service quantity and price a win all ways around :slight_smile: