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Please be kind and non judgemental, it costs nothing!!!!

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    Please be kind and non judgemental, it costs nothing!!!!

    So I’ve been in this forum since last year. Had some seasoned (long term) members of this group disputing my concerns about my health and symptoms with doubting pedantic comments over the time. Unfortunately, I’m not the only one who has received this sort of doubt and backlash from certain members of this community.
    I am under an amazing consultant now actually who listened to me after over a year of gaslighting from the so called “professionals” and told me MND was, unfortunately, on the table. Had EMG a few days ago (last one was in March).
    More abnormalities in my face including positive sharp waves, polyphasic potentials and instability. Tongue also abnormal and atrophied.
    I now have widespread polyphasia in my paraspinals, right arm and trapezius as well as face and tongue, reduced recruitment in places and positive sharp waves in my right arm and right calf as well as face. Clinical weakness on the right hand side of my face and reduced gag reflex. Another spinal tap soon and then my investigations are finished. They’ve ruled almost everything else out.
    The most hurtful thing (apart from the gaslighting destroying my family as they trusted some of the so called professionals) is that I came on here originally with concerns about my symptoms only to be gaslighted by other members too. It’s supposed to be a support group. All of the above has made me severely depressed. It’s amazing what a little bit of support can do for someone, especially when they need it. Kindness and understanding is free. It costs nothing.
    Love and prayers to the genuine and kind people on this group. As for the minority, if you don’t have any compassion or anything constructive to say then kindly jog on from the posts and don’t say anything that isn’t helpful. You have no idea what it can do to someone after feeling so alone and unsupported for so long.




    #2
    Totally agree with your post Becca , I went through similar on this Forum and still have numerous symptoms which point to MND but I have no definitive diagnosis ,am five years and 7 months from when this started for me (Christmas day 2016) ,just take one day at a time ,take care

    Comment


      #3
      For any members unsure of what ‘gaslighting’ means, please see the following definition:

      Gaslighting is a form of psychological manipulation in which the abuser attempts to sow self-doubt and confusion in their victim's mind. Typically, gaslighters are seeking to gain power and control over the other person, by distorting reality and forcing them to question their own judgment and intuition.

      Its not something I have witnessed personally in these threads and hope I never do 😕
      Foxes Never Quit 💙

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        #4
        Gaslighting in the USA is the same “overshadowing” in the U.K. from a medical perspective. It means that when the medical “professionals” are stumped and have no clue to what is going on, they tend to blame it on a mental health disorder including anxiety etc

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          #5
          Originally posted by Becca View Post
          I came on here originally with concerns about my symptoms only to be gaslighted by other members too.
          We aren’t medical professionals
          Foxes Never Quit 💙

          Comment


            #6
            Becca sorry to read your experiences, both with medical professionals and with communication interactions.
            Anybody coming to this forum has reason for serious medical concerns and should be treated respectfully and empathetically.

            I appreciate that questions by some along the lines of "Do you think this could be...?" will be extremely distressing to those further down a confirmed diagnostic pathway, but we must consider that 'uneven' health resources throughout the UK mean that some folk aren't getting timely or proportionate professional medical guidance for diagnosis, because it just isn't readily accessible in some regions. This forum may be the only structured platform they have for information (My own experience was 12 months of disinterest by medical professionals until visible atrophy, despite other complex long-standing physical medical issues that could have had targeted exclusion diagnostic techniques earlier to eliminate less serious type of symptoms overlaps).

            Although the forum clearly states it's not here to diagnose, we must also be careful not to dismiss and alienate folk, who may be in an understandably distressed and uncertain state.

            I think this topic is a delicate subject, but we must find a way through collectively so that folk enquiring are signposted with sensitivity allround.

            There are various research projects and existing peer reviewed papers exploring and outlining the challenges and lengthy time frames of formal diagnosis - hopefully these will lead to a meaningful answer on 'best practice' for folks with initially ambiguous but concerning symptoms.

            ​​​​​​​None of this is easy for anyone, regardless of where we are along a challenging journey.

            Comment


              #7
              Becca first of all I want to say sorry that you have experienced this. I have a few friends who are currently un diagnosed. I would never judge another person regardless as you never know what predicament they are in on top of awaiting a diagnosis. If you would like to private message me please do. I find it very upsetting that people say we cannot diagnose and then proceed to diagnose anxiety and give them a link. I am here for you Privately if you want to talk. I have bulbar palsy and I only have 2 years to live if you believe what you read. I am fortunate to have a wonderful husband, two amazing children and amazing support from professionals that's why I support others x

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                #8
                AndyM. The same applies to you Andy. Please pm me if you would like to chat

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                  #9
                  Hi becca, yes it is not nice I sympathise no one knows what anyone is going through in there lives, I think we know no one can diagnose and knows members aren't doctors.

                  Comment


                    #10
                    This post isn’t asking for medical advice.

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                      #11
                      Originally posted by Hairbsb View Post
                      Becca first of all I want to say sorry that you have experienced this. I have a few friends who are currently un diagnosed. I would never judge another person regardless as you never know what predicament they are in on top of awaiting a diagnosis. If you would like to private message me please do. I find it very upsetting that people say we cannot diagnose and then proceed to diagnose anxiety and give them a link. I am here for you Privately if you want to talk. I have bulbar palsy and I only have 2 years to live if you believe what you read. I am fortunate to have a wonderful husband, two amazing children and amazing support from professionals that's why I support others x
                      Thank you for your kind reply. I’m so sorry to hear of your diagnosis. You seem a very compassionate lady.

                      Comment


                        #12
                        Hi Becca,

                        I’m surprised you haven’t received an absolute roasting for posting in this section.

                        I was told to post in MND connect but strangely MND connect deleted my last thread, only ever had two.

                        I’m so sorry you have experienced similar to me, isn’t it shocking?

                        As I said in my thread which has vanished into thin air. Even Professors can make mistakes and EMG’s can indeed been done to early. Like you posted I now have a Neuro onboard who is ‘LISTENING’ and I’m glad you have also.

                        Your EMG results are obviously concerning!! And believe me I’ve come across ‘overshadowing’ disgraceful.

                        However their are a few really lovely people on this site. One I speak to regularly has actually been banned.

                        so, so sad I find

                        All the best will be thinking of you

                        H x

                        Comment


                          #13
                          Thank you for your kind words. I’m so sorry you and others have experienced similar.
                          There are also a lot of really nice people on here too.

                          Comment


                            #14
                            Well Becca a common theme of this online forum lately has been criticising regular users for perceived lack of sympathy.
                            I'm going to speak as a regular user however I don't have MND my husband does. It's easy for me to rattle off a reply, though I don't get into the fine details of this disease because I don't understand it. However I do understand what it does to people. My husband has the very small intermittent use of two fingers, he uses ventilation 24/7. As an eye gaze user all communication is extremely difficult and tiring.
                            This is your audience on this forum.
                            I've also noted over the years people with MND symptoms are not treated in an unsympathetic way, they are listened to but mainly advised to listen to their health professionals. Those people who maybe seen to receive little sympathy are those who will not listen to those who know and endlessly seek answers from the people here who cannot advise.
                            I'm sorry about the situation you are in, with my husband we were blissfully unaware that an MND diagnosis was likely and we knew very little about it.
                            However since diagnosis 4 years ago he has a maintained a great quality of life. Mind over matter.

                            Comment


                              #15
                              Becca - I went back and read your original "Could this be ALS?" thread.

                              I saw a lot of kindness and patience from many posters over quite a few months - and even the posts that you probably feel were unkind were generally just advising you that people on this forum are not clinicians, cannot diagnose - and recommending that you go to your doctors for answers.

                              I see on that thread that in the past year or so you've had a couple of EMG tests, and reports from doctors pointing away from MND/ALS which is reassuring in that regard. There are of course many other conditions that can produce some of the symptoms you're experiencing - and it's important to keep an open mind about potential causes so you can get the right treatment.

                              If anyone has been a bit less patient than you would have liked - please take note of the post by Music Man's Wife. Communication using assistive technology can be very difficult for some of the forum members.

                              I hope your doctors are able to get to the bottom of your problems - very much hope it turns out not to be MND/ALS - and instead something much more treatable.
                              Last edited by fjay; 10 July 2022, 07:38.

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