Announcement

Collapse
No announcement yet.

FND, hypochondria, delusional, somatic!!!! NOT

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #31
    Please feel free I only sent a couple of private messages, after the curt replies never asked agsin. Soon learnt my lesson

    Comment


      #32
      Perhaps HQ can reinstate my deleted thread perhaps..

      Comment


        #33
        Helen212 I got a 9.0 . Lost scoring on technical ability

        Comment


          #34
          Certainly remember the ‘another Sheffield apt or somewhere else this time’

          to which I replied

          ‘Sorry Ellie’?

          Anyway we all have bigger fish to fry I’ve seen some awful treatment on here and I stand by that.

          Not being reduced to playground he says, she says.

          Best wishes
          H x

          Comment


            #35
            Blame that Christopher Dean,

            You outshone him all the way lovely 😉

            Comment


              #36
              Admin_MND administrator I think it is absolutely disgusting the way that some people have now made this thread personal directly towards another member. I have had MND now for over six years and I have been coming here for help, support and friendship and to also offer something in return when I can, I do not come here to watch some people behave the way that they do, this is not Facebook.

              We have a member in Ellie who has taken it upon herself over the years since her own diagnosis to study MND so that she can offer informed help and advice to people such as me who use this forum. She is without doubt one of the most selfless, caring and helpful people you will find on this site. To personally attack her because she has asked questions directly in response to a post is disgraceful.

              Please stop this or take your nastiness elsewhere…..
              Foxes Never Quit 💙

              Comment


                #37
                Helen212 I'm fine this morning after my antics last night. Must say it shook me up. Battered and bruised (daugther says I'm a drama queen) thanks for messaging and asking how I am. Have a calm and blessed weekend. Xxx

                Comment


                  #38
                  Originally posted by Lcfcno1fan View Post
                  Admin_MND administrator I think it is absolutely disgusting the way that some people have now made this thread personal directly towards another member. I have had MND now for over six years and I have been coming here for help, support and friendship and to also offer something in return when I can, I do not come here to watch some people behave the way that they do, this is not Facebook.

                  We have a member in Ellie who has taken it upon herself over the years since her own diagnosis to study MND so that she can offer informed help and advice to people such as me who use this forum. She is without doubt one of the most selfless, caring and helpful people you will find on this site. To personally attack her because she has asked questions directly in response to a post is disgraceful.

                  Please stop this or take your nastiness elsewhere…..
                  I couldn't have said it better myself. The recent posts have really been personal and so unnecessary. Quite sad what people will say on an online forum where u can be anonymous. Disappointed to see it on here given what we are trying to manage on a day to day basis.

                  Comment


                    #39
                    I think there is clearly a divide between people who have had a straight forward diagnosis and those where it has taken years to find answers and the former can't really understand what the latter has to go through to get there. However, the anger really needs to be directed towards the problem - the lack of reliable diagnostics and specialist neurologists. Until there is a reliable test then difficult / non-typical cases will continue to cause so much suffering to the families involved as so much is reliant on the experience of the Dr and their personal bias.

                    It's really the key to finding treatments too - earlier diagnosis results in longer study periods and may even help with identifying pre-symptomatic patients and any treatment found is likely to be most effective in early cases. As it stands, there is very little accountability in neurology for a swift diagnosis, which is part of the problem. Neurologists have to be 110% certain that it is MND before they are likely to diagnose you with a terminal illness for good reason but also for their own legal protection. So there is little incentive to even worry the patient about MND unless there are strong clinical features and supporting evidence such as EMGs, which is why atypical cases get fobbed of with really demeaning labels that can cause damage to their personal relationships as well as their wellbeing. The issue is there is even less funding into diagnostic research than treatment and until an effective, life-prolonging treatment has been found, time to prepare while able is such a valuable asset provided by a quick diagnosis. I'm in the watch and wait criteria, and while I think the FB groups are more accepting of people like me from my experience, i definitely don't hold it against people who are currently dealing with MND.
                    Last edited by Petey; 6 August 2022, 19:19.

                    Comment


                      #40
                      Totally agree

                      Comment


                        #41
                        I think when you have ambiguous symptoms but no answers you go on forums out of desperation perhaps for some comfort etc but of course no one can give you the answers

                        Comment


                          #42
                          I don't think people say things with intentional malice they say how they felt why would they? whats the point? perhaps its also with the stress of not knowing what is wrong with them

                          Comment


                            #43
                            Just for information I am atypical and was diagnosed without the emg due to the neurological examination the brisk reflexes and increased muscle tone babinski sign and hoffman's sign etc etc. After mri scans clear. And rare genetic testing clear. It isn't always about emg and perceived atrophy. It was a very daunting worrying 1 year period but I assumed mnd for half of that time. However never would I have come here and been rude and angry and personally nasty to members here!! Just wouldn't happen. We are all desperate and anxious for that waiting time but it doesn't mean you can go onto a forum and say such hurtful upsetting things. Just plain selfish. Sorry but it needed saying. We all need to be respectful no matter how much we are struggling. X

                            Comment


                              #44
                              Oh it's all my fault Princesses! (Or maybe Ellie's)...

                              https://www.youtube.com/watch?v=eLVF_aMHE2c

                              Worse things happen at sea or maybe not...

                              ...

                              I knew it ... DENISE ... where's DENISE!

                              Love and hugs xxxx
                              Last edited by Graham; 7 August 2022, 00:15.
                              Copyright Graham

                              Comment


                                #45
                                Polly….Manuel then you Graham 👍🏼

                                One of my fave clips

                                Comment

                                Working...
                                X