Early stage continuous aches and pains

[Claireflo]

I agree AngieCanuck, a separate thread would be good as those who want to respond can and those that don't wish to see the posts or are affected by them don't need to see the posts of every new symptom. However, the advice remains that no one on here can diagnose or confirm which symptoms are likely MND as everyone's symptoms and progress are individual and unique as has been said repeatedly. The best advice that can be given is to see your medical practitioner (GP / Neurologist etc) and seek support for anxiety or stress in the meantime. Also contact the MND connect line to speak to someone.

In my experience this forum has been nothing but welcoming and informative, a place for shared experience from celebrating those little wins to suggestions around equipment and even dealing with the final stages of what is a horrible illness. It is a online community valued by many and terms such as bullying are very strong terms to be used. In my opinion I haven't seen anything that constitutes bullying. I welcome honest and direct discussions (regardless of grammar or spelling) and appreciate the experience shared from longstanding members, recognising the huge effort this may require and the sense of humour that still shines through despite it all.

[Helen212]

Angie

I think that’s a great idea, and perhaps something can be considered by the powers that be.

one could then decide to engage or ignore if understandably it’s upsetting and takes much time and makes horrible memories come to the surface.

I’ve had some wonderful caring advice on here both on thread, and indeed privately. I had a message of a young guy once though that kind of said ‘everyone was like that with me to start but once diagnosed they changed’

Left rather a bitter taste in my mouth to say the least.

I certainly wish I’d never posted 10 months ago when symptoms were nothing compared to now.

I take my hat of to HairBSB and others who despite their challenges still being very raw, they hold an ear to listen. I don’t know if I would have the strength to do so.

wishing all well, what an eventful thread and I do hope Shepster you are reassured today. It’s so hard in Limbo.

kindness to all
H x

[Ellie]

AngieCanuck That is what the MNDConnect subforum is for: it is a separate area where people with worries about MND can ask questions of specially trained MNDA staff, without impinging on the general areas of the forum.

The OP has 4 threads on the MNDConnect subforum, and has had their responses both in writing and on the phone, which is a great resource for the OP, as it has been for other contributors to this thread.

[Arcadian]

Yes AngieCanuck - that should be a good idea with it's own thread on the forum - I felt 'challenged' when I first posted on here, which was a disappointing surprise as GP and myself had already had a blunt and pragmatic convo about harsh reality and most of the 'other' diagnostic exclusion tests getting out of the way as there was a direct concern early for MND, due to other aspects of medical history and Neurologist Consultant had agreed to less conventional diagnosis discussion after EMG / NC and observations

[Helen212]

I didn’t realise there was an MND sub forum where can we find that please?

[Ellie]

I didn’t realise there was an MND sub forum where can we find that please?

Your threads are both on the MND Connect subforum already Helen x

[Helen212]

I see, I thought you meant there was a different place. I just went on to ‘Ask mnd Connect’ rather than ‘introduce myself’ maybe that thread should be answered my mnd staff perhaps, although given some of the moderators (not employees) i’m not sure.

Thanks

[Hairbsb]

Really!! You don't feel telling someone to see a shrink is condescending oryou have anxiety. If you are unable to diagnose please don't diagnose someone with anxiety or tell them to see a shrink . You see what you are saying is incorrect. Say nothing at all would be the best option. People on this forum are neither neuros, GPS or SHRINKS either. Please refrain from telling that to terrified people.

[Hope]

This post is becoming a little muddled. I do not see any bullying here. I agree that sometimes people are told their symptoms do not displays signs of mnd. I have been reluctant to post about my symptoms because, although I am diagnosed, they do not appear to be typical. I have the greatest respect for anyone who responds to any query here in an honest manner. I dislike the aggression being directed at some people, it is not warranted in my opinion.

[PeterPan]

Really!! You don't feel telling someone to see a shrink is condescending

I’ve never seen the word ‘shrink’ on this forum before. Can we please lower the temperature in this discussion?

[Ellie]

I just went on to ‘Ask mnd Connect’ rather than ‘introduce myself’ maybe that thread should be answered my mnd staff perhaps,

You're right Helen, questions on the MND Connect subforum should be answered by MND Connect themselves - for anybody unaware of who or what MND Connect is:

"The MND Connect team consists of a team of experienced staff and volunteers who work closely with our local and regional services.
Our team members have backgrounds in occupational therapy, speech and language therapy, nursing, midwifery, education and carers’ services. Together we offer 40 years’ experience in providing specific MND support."

In my opinion, they often take too long to reply on their own subforum, if they reply at all, which isn't great for anyone.

I know they have replied to you on several occasions and have spoken to you on their helpline, which must be a great resource as speaking one-to-one in a real time conversation in which your worry and other emotions can be actually heard, must be better than waiting a day, or longer, for a written reply.

I am 'guilty' of replying on the MND Connect subforum, but I try only to post after Connect have, to allay fears and to give perspective if one is lacking. x

[Admin_MND]

Hi all,

As per the forum guidelines, this thread has now been locked as we feel the discussion has become too heated and is igniting an unhealthy debate. We will however take on board the suggestions about how we can improve sections of the forum.

Our aim for this forum is to be a safe, friendly space where members can offer support to others who have had or going through a similar experience. In particular we would like to remind members that sometimes the written word can be taken out of context due to the lack of expression you would normally get from the spoken word. Pause for thought before replying to a post and reread the post later – the intention may be clearer after you’ve had some time to reflect.

Furthermore the Forum is not a substitute for professional advice, nor is a member qualified to provide medical advice, regardless of their experience or expertise. You should consult your doctor, or other relevant professional, before making any decisions that could affect you or others

This and more is clearly set out in our forum guidelines which can be found here.

If anyone has any concerns then please contact us directly via the messaging tool or via the contact us form and we’ll respond as soon as we can.

Thanks,

Forum Admin.