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    #31
    I'm also getting some counselling for the anxiety Ellie hopefully that will happen before Xmas.

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      #32
      Hi TAPG1,

      I would be worried to but worrying is just making you worse. I've nothing much to add over the advice that has already been given by me and others including the Mnda.

      I'm no expert but all of your symptoms don't match Mnd, in the way that they have occurred or just don't match.

      I don't know if it could be some other disease like MS etc but I would have thought that a MRI would have picked it up.

      There are many things that cause problems but your doctor would be the best person to speak to.

      Best wishes, Terry
      TB once said that "The forum is still the best source for friendship and information."

      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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        #33
        Hi, Can someone tell me how to close my account on the forum please. Do l need to contact admin to do this? Thanking you TAPG1

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          #34
          Dear TAPG1,

          We are currently in the process of looking into this for you.

          We will let you know as soon as possible.

          Kind regards
          Jacqui Anderson
          Senior MND Connect Adviser
          MND Connect
          Contact us on 0808 802 6262 or at [email protected]

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            #35
            I'm sorry if this post is going to annoy anyone but this forum and the people that are on it are all l have at the moment. Anxiety taking out of my symptoms. l now have a build up of saliva on the inside of my mouth on both sides, also the sides of my lips feel wet. I feel my tongue when lm speaking is getting caught between my teeth surely this is not normal and can't be all down to anxiety! The twitching has also increases l have it in my chin, face and l can feel something in my tongue and lm feeling a strange sensation at the top of my leg the same spot the last few days the only way l can describe that is buzzing or crawling sensation. Could these symptoms be bulbar onset? I know ye are not doctors or neurologists and can't diagnoise but ye all seem to know what ye are talking about. Before anyone judges me and tells me l have anxiety yes l have because of how lm feeling and experiencing which lm sure some of ye might have being where l am. I certainly don't want to be on this forum and having to post questions and torment anyone but l don't have anyone else to turn to. Is it possible that a neurologist could make a mistake? If anyone can reply to me with any advice l would really appreciate it. I'm beyond terrified. I don't want to upset anyone and l know ye all have more important things going on in yer lives without having to listen to me again but if anyone can help l would greatly appreciate it.

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              #36
              Hi TAPG1

              I am sorry that you still have concerns and to hear that you are worried.

              As we've discussed previously, facial twitching in the way you describe would not be a typical symptom of motor neurone disease. Twitching itself is not a symptom of MND, especially in the early stages of the disease. A neurologist would not even consider that someone might have MND if they presented with twitching in the way that you describe. Someone with MND would be most likely to have other symptoms, which you do not.

              As we've discussed a few times and as you have done, you are welcome to contact us here at the helpline, MND Connect with any concerns that you have. The members of the forum are not health and social care professionals and are here to support each other with living with MND. They can not give you information about the possibility of having MND and only a neurologist can answer questions about a specific person's health conditions.

              Please do know that MND Connect are here to support you. You can contact us with any of the concerns or questions that you have. Our number is 0808 802 6262.

              Best Wishes

              Rachel
              MND Connect
              Contact us on 0808 802 6262 or at [email protected]

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                #37
                Ok Rachel l'll contact the healthline directly in-relation to my other symptoms which l have mentioned in my post and also the swaying sensation l have when standing, the extra saliva and not pronouncing some words properly.

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                  #38
                  I have just emailed Rachel as l can't ring at the moment. Thank you.

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                    #39
                    Hi TAPG1,

                    You have no need to close your account here and I will respond if I have any further to add.

                    Best wishes, Terry
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                    Comment


                      #40
                      ����Thank you Terry and thank you for your kindness towards me and l know all of ye have more important things to be doing then listening to me again.

                      Comment


                        #41
                        What worries me about your situation TAPG1 is that you’re so focused on MND being the only possible reason for your symptoms, that you’ve fallen down a rabbit hole from which it’s very difficult to climb out. You can only perceive you must have MND and that perception has become your reality - that’s a very frightening place to be

                        But, by continuing to seek advice only on MND, you’re neglecting your mental health, which is as important as your physical health. I’d love you to concentrate on reducing your crippling anxieties, which are consuming your life right now, rather than posting on this Forum and to be able to enjoy life. If you could get continuing help for your anxieties and get control of your mental health, it would improve your life immeasurably.

                        I have lived with MND/ALS for 13 years now and have learned such a lot about the disease and from the disease over time and, whilst I’m not an expert in any shape or form, I find that I often know more about MND than many a healthcare professional I’ve met.

                        Genuinely, I wish you well in seeking and finding treatment.

                        Love Ellie.
                        Last edited by Ellie; 4 December 2019, 12:23.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #42
                          Ellie, Your post has me crying. You just you have it all so right, I am in a very frightening place at the moment with all these symptoms as they are all pointing to one thing which lm not going to go into again. I have an apt Thursday morning with a professional who specialises in anxiety/mental health and hopefully he will be able to help with how lm feeling. I don't want to be on this forum or posting about my symptoms but l know deep down inside something is wrong, have you ever felt like that? Thank you for the reply Ellie and l wish you the best.

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                            #43
                            Hi rachel123 - just wondering how you are doing? My mum also has MND and it’s a lot to get your head around. How are you all coping now?

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                              #44
                              Just an update on how l got on yesterday especially for Ellie as l know you were quite concerned about my mental health/anxiety and l know a lot like to know how somebody gets on. l had an apt with psychiatrist who also trained as a neurologist then branched out into psychiatry, a lovely gentleman who was very kind and listened to me and advised that l go on medication which l started this morning for my anxiety😭😭. He is referring me back to the MND specialist because of my new symptoms, my slight slurring of some words, and the feeling in my chin plus the saliva on the inside of my mouth and cough, not coughing when lm eating just on and off. l am now terrified as l know this is not good but at least l am being listened to and hopefully will get to the bottom of this sooner rather than later. I feel deep down inside these are bulbar symptoms, maybe lm wrong (praying l am)😭 but l think we are always right, are we!. Thanks to all for the replies and advice over the last few weeks and l will let ye know how l get on with my apt if ye want!

                              Comment


                                #45
                                Thanks for the update and I'm so glad that you seem to have clicked with the psychiatrist.

                                TAPG1, please don't feel any shame whatsoever in needing to take antianxiety meds (no need for crying emojis!) Anxiety is as real an illness as hypertension is and you wouldn't feel bad having to take meds to lower your blood pressure.

                                As I'm sure you've been told, the meds can take time to kick in, so don't expect to feel better instantly.

                                Yes, please do let us know how your neurology appt goes.

                                Love Ellie.
                                ​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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