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

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

    ​ ​Was told I was delusional, had FND, somatic disorder, hypochondria, BFS for over a year by 2 neuros.
    I knew it wasn’t. When was the last time anyone heard of anyone having the above conditions I was officially diagnosed with, with an EMG like this?? I’ve been told motor axonal loss.

    #2
    Clinical weakness in right side of face. Atrophy in neck, leg, face and tongue. Confirmed by an amazing neuro who actually LISTENED to me as a patient.
    I’m so upset and disgusted that I was told it was all in my head previously.

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      #3
      Hi becca. Have you been diagnosed? We are here so vent away x
      Diagnosed May 2021 bulbar onset als.

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        #4
        Becca What condition have you been diagnosed with? It's unclear from your posts.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Originally functional neurological disorder, hypochondria, delusional. Have you seen my recent EMG? Do the above disorders cause motor axonal loss? Do tell Ellie.
          Last edited by Becca; 3 August 2022, 21:12.

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            #6
            my recent EMG 8326529B-5FB3-4784-87ED-9370B56E3DE1.jpg

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              #7
              So do you accept the diagnosis of FND? The axon loss you mention could be a number of things. For example MS. I have no idea how to analys but most of it is normal.
              Diagnosed May 2021 bulbar onset als.

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                #8
                Oh, I thought you were posting to say that your new Neurologist had finally given you a diagnosis.

                I was further confused when you posted in the 'Life with MND' subforum, which is a place to discuss life with motor neurone disease.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                  #9
                  Originally posted by shelly21 View Post
                  So do you accept the diagnosis of FND? The axon loss you mention could be a number of things. For example MS. I have no idea how to analys but most of it is normal.
                  FND doesn’t cause denervation ( positive sharp waves, fibs, reduced recruitment, polyphasic potentials) on an EMG. So yes myself and my specialist do disagree with FND.

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                    #10
                    Originally posted by Ellie View Post
                    Oh, I thought you were posting to say that your new Neurologist had finally given you a diagnosis.

                    I was further confused when you posted in the 'Life with MND' subforum, which is a place to discuss life with motor neurone disease.
                    I actually posted it in the introduce yourself part. Maybe the forum statuses should be more clear.

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                      #11
                      Originally posted by Becca View Post

                      I actually posted it in the introduce yourself part.
                      I was referring to your most recent thread which you posted in the 'Life with MND' subforum.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                        #12
                        Originally posted by Ellie View Post

                        I was referring to your most recent thread which you posted in the 'Life with MND' subforum.
                        I didn’t realise I’d posted it there. Apologies.
                        Also, it takes neuros months, sometimes years to diagnose MND. My EMG results are clearly abnormal and state motor axonal loss.
                        Some patients die before even getting a diagnosis. MND is called heterogeneous for a reason. There are also no clear biomarkers for diagnosing this awful disease.
                        In my case, unfortunately, they have ruled all of the mimics out. My EMG’s are getting progressively worse with denervation.
                        Are you saying I’m not allowed to post on here until I have it put on a piece of paper?
                        man I not welcome on this group for airing my frustrations when everything else has been ruled out?
                        Because of what the other neuros said for over a year, I had no support from my family, the neuros were wrong to blame my symptoms on a mental health condition when it clearly wasn’t.
                        Do I suffer in silence with nowhere to turn?
                        It seems that this is what you want me to do.
                        TBH you’ve had it in for me the day I started posting on this forum. I’ve seen your sarcastic comments towards others too who are clearly concerned about their symptoms.
                        Regardless to wether someone has this disease or a going through the diagnostic stages. Kindness goes a long way and not picking with sarcastic comments isn’t helpful at all.

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                          #13
                          Becca in my opinion for what its worth is that the only nastiness and sarcasm seems to be coming from you.

                          I understand that you are upset with how long it seems to be taking to get a diagnosis of MND or anything else and that you feel that the medics are dismissing your concerns. But its not fair to vent those frustrations at individuals on here who are very knowledgeable about MND but cannot confirm diagnosis or otherwise.

                          Perhaps you need to re-read your posts and see how they can be interpreted by others. Your use of phrases "gaslighting" and "overshadowing" seem a little aggressive and when you direct them at members on this forum just seem a little unnecessary.

                          I have just read through your posts and you seem to have come on here to have a go at someone or anyone. I get that you want to vent your frustration and you are welcome to do so, but please don't direct your frustration at people who are not directly involved in your care - or lack of care.

                          It is no-ones fault on here how you perceive you have been treated by the medical profession.

                          You use medical terms which I certainly don't understand to try and get the answer that you want when the only people that can provide the answers are the medics.

                          You don't seem to want to hear this - I get it, it has been said nicely to you, but you continue to be nasty to people who are trying to help.

                          You ask for kindness for yourself but you are not being kind.

                          I don't know what responses you expect.

                          The advice to date has been to get answers regarding your symptoms from the only people who can tell you the answers - the medics. No one else can. No amount of pushing back on here will change that.

                          Please take the advice how it is meant.

                          Anger towards members on here will not speed up diagnosis or indeed rule it out.

                          Being diagnosed isn't the be all and end all. Even if you do unfortunately have MND you need to enjoy life and do what you can while you can, which is exactly the same if you do not have MND.

                          I don't want to get into an argument with you, I don't have the time or the energy, but hope you can appreciate my comments and take them as intended. They are not meant to provoke further bad feeling.

                          People on here are already dealing with serious ****. They don't need personal digs or insults.

                          I hope you don't have MND and that you get your answers soon.

                          Best wishes x

                          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                          Respiratory and blood gases still within normal range.

                          No speech but sense of humour still fully intact.

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                            #14
                            I’ve been on this forum for about two years during which time I have seen some spats, disputes, arguments or clash of personalities, call them what you will, however the one consistent thing is that it doesn’t change anything. It’s still a crappy place that everyone finds themselves in and place where everyone just tries to get through each day.

                            A wise work colleague once said to me if you get an email that really annoys you apply the 12 hour rule i.e don’t reply for at least 12 hrs by which time the anger and frustration might well have abated. Worked for me.

                            this is a general comment not aimed at anyone specific.

                            PS if that fails you can always just block individuals that way you won’t see anything 🤔

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                              #15
                              Becca if you have been diagnosed with FND and you believe this is not accurate the best thing you can do is see Prof Mark Edwards. He is the world leading expert in FND.

                              You can see him privately through "Brain and Mind" in London. It isn't cheap but he is kind and and really knows a lot about other conditions, not just MND. He can either rule FND out or maybe explain it to you if he decides you do have FND.

                              I saw him and he was extremely thorough, listened and helped me understand what was going on with me. He then referred me on.

                              Please try not to take out your frustrations on people in this forum. We are just human. We are not MND diagnostic experts.
                              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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