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    Back again -sorry to ask for advice

    I am asking for a bit of advice if possible - I am 3 years and 7 months into symptoms and as of today still have no full diagnosis -my symptoms are as follows Bodywide fasiculations , muscle loss in arms/hands/feet and legs , low on energy , wake up every morning feeling unrefreshed even though use a CPAP machine as was initially diagnosed with Sleep Apnea but since told do not have SA but Hypopnea , also random other symptoms like have lost two toenails , Urine is darker , hair growth on legs seems more than I remember !!

    I have seen 6 Neurologists now had 4 EMGS ,the last one of which was in April of this year , picked up Fasisculations in couple of muscles and also some mild neurogenic changes in left calf -technician who done test said no sign of MND but points to spinal issues ,the Neurologist has said no further Neurological follow up required and discharged me! -I am beside myself with worry as this is 3.5 years of not feeling well and progressive symptoms .

    My question is after 3.5 years of symptoms would I still be mobile to the point where I can still walk 3-4 miles ,carry bags of shopping etc -I in myself feel weaker but last Neuro said could detect no weakness -I am so confused as wonder if I have a very slow progressive form of MND

    I just do not know where to turn -the one thing as a positive I hang onto is the timescale .

    Would value your thoughts on this and if you think i would still be active 3.5 years in.

    I hope people do not take offence at this as i am genuinely concerned -still .

    Many thanks

    Andy

    I apologise i think i might have posted in wrong category and not sure how to move it to correct topic-sorry

    #2
    Andy, you have asked this question over and over and have been answered, not only on this Forum either.

    If you won't believe the verdicts of 6 Neurologists, 6 highly trained professionals, you are not going to believe anyone on this Forum either.

    The advice I will give you today, the same advice as you have had in the past and ignored, is to seek professional help for your obsession.

    Truly I wish you the best but you need help to address your Nosophobia.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Thank you for your reply Ellie ,yes I take what you are saying but wonder if the timescale is on my side based on my symptoms ,I value your thoughts and advice I really do and you are the voice of reason but .

      Some of the symptoms I have now I didn't have before ,its the timescale I am mainly asking about.

      Kind regards

      Andy

      Comment


        #4
        Get a gene test Andy. I too was read Last Rites in 2012. There are many many MNDs all with different symptoms.
        Last edited by Admin_MND; 6 July 2020, 09:54. Reason: Removed rude comment
        Copyright Graham

        Comment


          #5
          You can go private for a gene test. The neurologists have a habit of fobbing people off and saying, 'It is all in your mind'. Very seldom are they right Andy.
          Copyright Graham

          Comment


            #6
            Hi Andy

            I'm sorry to hear that your symptoms are still concerning you. After 3.5 years, someone with MND would likely be quite severely disabled. Even with a slower progressing form of the disease, the person would most likely be showing signs of clinical weakness which would be picked up on examination by a neurologist.

            6 neurologists and 4 EMGs is a lot of investigation, far more than someone with MND would usually have. I think you do need to follow Ellie's advice and listen to the 6 experts that you have seen. There is nothing to indicate that you have MND.

            If you'd like to discuss your concerns further, then please give us a call on 0808 802 6262. Whilst the forum is an excellent place to access support, it is not a place where members should be advising about symptoms or possible diagnosis of MND.

            Best Wishes

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

            Comment


              #7
              We've removed a few posts from this thread, because we do not tolerate rude or unpleasant comments about other members on this forum.

              In our forum guidelines we ask that you respect each other and be kind to each other. Contributions must not contain any material which is defamatory, libellous obscene, offensive, vulgar, sexually orientated, hateful or inflammatory.
              You can find these here - https://forum.mndassociation.org/forum-guidelines

              Our forum rules are here - https://forum.mndassociation.org/privacy

              So please, play nice!

              Forum Admin.
              Our working hours are Monday to Friday 8:30am until 5pm

              Comment


                #8
                I totally agree.

                It is important to watch all posts. I have been on this forum the longest and have noted people leave because of rude posts.

                Let's play nice and not assume people have nosophobia.
                Copyright Graham

                Comment


                  #9
                  Hi Andy, I think after that length of time something would show up, or on the emg,maybe try a MND specialist?

                  Comment


                    #10
                    Originally posted by MNDConnect View Post
                    Hi Andy

                    I'm sorry to hear that your symptoms are still concerning you. After 3.5 years, someone with MND would likely be quite severely disabled. Even with a slower progressing form of the disease, the person would most likely be showing signs of clinical weakness which would be picked up on examination by a neurologist.

                    6 neurologists and 4 EMGs is a lot of investigation, far more than someone with MND would usually have. I think you do need to follow Ellie's advice and listen to the 6 experts that you have seen. There is nothing to indicate that you have MND.

                    If you'd like to discuss your concerns further, then please give us a call on 0808 802 6262. Whilst the forum is an excellent place to access support, it is not a place where members should be advising about symptoms or possible diagnosis of MND.

                    Best Wishes

                    Rachel
                    MND Connect Adviser
                    Hi Rachel , Thank you very much for your response , I do question the time frame myself as now 3 years and 7 months into symptoms of which i stated in my original post and i just seem to have got no where really , I have so many bodywide symptoms which to me points to a systemic problem and all i get is that it is most probably issues with my spine and that i have a high level of anxiety -I even went down the route to prove that i am not suffering directly from anxiety but am anxious due to the physical symptoms that i have developed -I hang onto the timescale though and did phone your helpline on the 3rd of this month and spoke to Andrea who was very helpful and said that the timeframe was in my favour and if it was MND i would have one of the really slow onsets and practically unheard of to go this long without some sort of limb failure .Thank you again for your reply .Andy

                    Comment


                      #11
                      Hi Andy it's horrible when you have symtoms but don't no what is wrong you just need someone to say this is what it is and give you some treatment, I think with the amount of emgs you have had something would have shown up by now I really hope you get some peace

                      Comment


                        #12
                        It was 2 years before I was diagnosed with MND. It is very difficult to diagnose MND, however a whole gene test would reveal your susceptibility. If you really need to know, it may cost you, or count your lucky stars that your disease is relatively benign. And there are some benign forms of MND that you may like to research.
                        Copyright Graham

                        Comment


                          #13
                          That is such a long tíme Graham you give good advice

                          Comment


                            #14
                            Sorry to post again but my symptoms are progressing and I asked my GP to refer me back to Local Hospital who initially discharged me in September 2017 saying my main symptom was Anxiety!!! I have been Private twice and basically got no definitive diagnosis , was told i had Sleep Apnea then I didn't , got bodywide fasiculations , muscle loss in arms and legs ,fatigue ,pale skin especially hands and feet , oedema in feet and lower legs ,I even went to National Neurological Hospital last November again they told me Anxiety and that i had to lose a lot of weight to alleviate symptoms ,has made no difference ,In February this year I saw a Neurologist whom i had seen initially privately ,he again said i needed counselling but agreed to get an EMG done for me which i had done in April -his words was he was organising it against his better judgement!! anyway find attached I wonder if somebody can break it down for me as it shows 3 areas of concern and reduced recruitment in both lower legs -Many thanks , today i received a letter from my Local Hospital declining my referral and stating that i should get referred by my GP to the Neuropsychiatry Unit at National Neurological Hospital in London -I am now 3 years and 9 months since first symptoms but all I get is that its anxiety /in your head response from medical professionals even though the EMG shows something is going -Sorry to ask again -Kind Regards Andy
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                              #15
                              Originally posted by AndyM View Post
                              I wonder if somebody can break it down for me as it shows 3 areas of concern and reduced recruitment in both lower legs
                              That's a question for your (highly trained) Neurologist.

                              Is the Neuropsychiatry appt to do with the FND diagnosis?
                              Last edited by Ellie; 12 September 2020, 17:26.
                              ​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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