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    National Neurological Hospital Visit

    Not sure what category I should post this in but as undiagnosed and having posted on Forum before wondered if anybody on Forum has been to National Neurological Hospital ,Queens Square ,London.

    I have an appointment there next week and am travelling up from the South Coast and was wondering if any Forum members could advise on would will happen, I have a General Outpatients appointment and was wondering if they suspect anything after initial consultation would they instigate additional tests on the day being as I am not local as such ,just wondered if anyone could advise me of their experience when attending hospital -going to be an expensive day travel wise so just would like some advice if known.

    Many Thanks

    #2
    Good afternoon Andy

    Interesting you have an appointment there - I am looked after by Kings College Hospital, Denmark Hill myself.

    Firstly, they really ought to consider the appointment time so you can get a cheaper fare - I am not sure where you are on the south coast. But, for example, an off-peak from Southampton is about £30 and on peak is getting on for 3 times that.

    And can you not get any response from them as to what they are proposing to do?

    It may be anything from simply observing your symptoms and asking you questions about them through doing some simple tests of your reflexes by which they can diagnose what is happening to your motor neurones to giving you a series of more invasive neurological tests which you really ought to be prepared for?
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

    Comment


      #3
      Hi Andy,

      Thanks for your reply ,am just along South Coast from you Bognor way, sadly my appointment is 10 oclock so will have to pay full whack to get there. Such a long drawn out affair this has been as of next month it will be 3 years from when I had first symptom and 4 Neurologists have said it isn't MND (although I have so many of the symptoms) last Neurologist I saw was in March and he recommended CBT treatment and that I would be back to work within 3 months .
      Went down that path and was told not anxiety as underlying symptom but that I am anxious because of undiagnosed symptoms and timescale , I kicked off to local Hospital lots of phone calls etc and next thing I am told is that I am being referred to National Neurological hospital -talk about being pushed from pillar to post!
      I have spoken to MND association on several occasions this year and they have been really helpful and told me that timescale is on my side as nearly at 3 years and nothing has failed yet which is rare however I am still unconvinced.

      I am prepared and ready for whatever tests they want to do but am concerned as just got a General neurology outpatients appointment as my GP still thinks my main symptom is anxiety and being overweight -it goes on.

      Best

      Andy

      Comment


        #4
        Good morning Andy

        I am actually in central south London, but am looking to move south to get a place which will accommodate me with a wheelchair if that is indeed the way I go, which is the expectation. I know Bognor well as that is where my mother, who is now in her early 90s, lives, and one of the considerations in our move.

        I suppose it is encouraging that has taken 3 years to get where you are - as I am arm onset, the family joke is that I have a good card from a bad hand (bad hand? Get it?)

        It is odd your GP thinks your main symptom is anxiety and being overweight - surely you must have some loss of muscle use to be heading for a MND diagnosis? Dare I ask what are your other symptoms?
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

        "Things turn out the best for people who make the best of the way things turn out"

        Comment


          #5
          Hi Andy ,Very sorry for the delay in responding to your post as I have not logged in here for a fair while

          Anyway went to National Neurological Hospital in London last Thursday -was under a General Outpatients appointment and told would see one of the Clinical team ,however I had been referred to one of the Top guys based on my GP referral even though I had a 5 month wait for appointment as my GP placed no urgency on the referral!!

          Was glad to say that saw the guy I had been referred to who was a Professor -first of all he advised me that had only read one letter pertaining to myself which was referral from GP even though he had enclosed other letters , he went through my Timeframe ,symptoms etc I listed my symptoms which are Bodywide Fasciculations , Muscle loss arms/legs/hands/feet , fatigue , breathing issues (laying down) tremors -unease in system etc
          He then put me through a full clinical exam , strength tests,observations and reflexes etc and said as far as he concerned not MND and that time frame bears this out as next month will be 3 years from 1st symptom and I have had no failure of anything yet , he said my Clinical/Neurological examination was perfectly normal -to say I was surprised at this would be an understatement.
          He said that all my symptoms are being caused by Spine issues Degenerative Disc disease (Top to bottom) ,Spinal Stenosis(Lumbar region) ,impinged nerves etc (I showed him copies of 3 EMG's I have had done 2 of which stated Chronic Neurogenic changes-he said these were due to spine problems) also he said that I also have Sleep Apnea which was investigated for and have been on CPAP for past 12 months.

          Overall he ruled out MND based on timeframe and Clinical exam and said after nearly 3 years I would be a lot worse than I am -I asked him how so sure and he said Clinical examination was sufficient for him and no further testing was required!!.

          I am still perplexed a bit but he was one of the Top guys there so have to believe him ,not sure I can go any higher than National Neurological Hospital.

          Best

          Andy

          Comment


            #6
            Originally posted by AndyM View Post
            He said that all my symptoms are being caused by Spine issues Degenerative Disc disease (Top to bottom) ,Spinal Stenosis(Lumbar region) ,impinged nerves etc (I showed him copies of 3 EMG's I have had done 2 of which stated Chronic Neurogenic changes-he said these were due to spine problems) also he said that I also have Sleep Apnea which was investigated for and have been on CPAP for past 12 months.
            Thanks for the update Andy.

            Hopefully you can finally put all thoughts of MND out of your mind and concentrate on getting as much help as possible for the degenerative disc disease and managing the sleep apnoea, including adjusting the settings if your respiratory technician deems it necessary.

            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


              #7
              Thank you Ellie x

              Comment


                #8
                Pleased to hear that you are not a full member of the team forum, Andy,

                Hope you get some sorted soon and feel a lot better and it's always nice to know that your wife is right, NOT.

                Love Terry
                Last edited by Terry; 26 November 2019, 16:57.
                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


                  #9
                  Good morning Andy

                  Thanks for coming back and letting us know, very pleased to hear, as Terry says that you will not be becoming a full member of the team.

                  I hope you can get your spinal issue sorted out is no doubt this will make you feel better- also good luck with the sleep apnoea assistance - I was surprised on my overnight oximetry how much my blood oxygen was falling overnight.
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    #10
                    Thanks Andy -I still struggle to understand why I still have so many symptoms that point to MND but having now seen 5 Neurologists including a Professor at the National hospital I have nowhere to go now and will have to accept what I have -I cannot believe they are all wrong and I have lost now functionabilty anywhere and approaching 3 years of this -the guy I saw was adamant that the muscle loss /fasciculations etc all spine related and also said that if MND I wouldn't be putting on weight -I have to believe him don't I

                    Best

                    Andy

                    Comment


                      #11
                      Hi Andy

                      I guess you do have to believe him - I certainly have no other options than to believe what they say and comments from other people who look at my hand damage for example, and say that I have a typical shape connected with arm onset.

                      Perhaps for your information, the weight loss thing is about one of the symptoms of motor neurone disease is an increase in metabolism, perhaps linked to the motor neurones thumping around - fasciculations take energy et cetera et cetera.

                      Presumably, hence his comment that if you get MND you should lose weight.

                      Does not work in my case because I was very active before I got MND and now less active, but have not adjusted my diet properly. So, in fact, I put on weight since I have had it rather than lost it, which certainly confuses my neurologists
                      Warmly


                      Andy

                      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                      "Things turn out the best for people who make the best of the way things turn out"

                      Comment


                        #12
                        Hi Andy ,

                        Do find it hard to believe him but now seen 5 Neurologists and all said not MND and Clinical Exams have been fine , the guy said last week that he rarely put down on his report Normal Clinical Examination - I asked him about having an EMG done and he said there was no need and he could tell by his Examination that no sign of any Neurological disease!!

                        Do you mind me asking what you mean by typical shape connected with arm onset , reason I ask is because I am convinced my arms /hands have also shrunk /changed shape also wrists have got thinner too but when I showed Neurologist this last week he said he couldn't see any problem and said I had full power in my arms /hands.

                        Interesting regarding weight because in the first 7 months from start of symptoms I lost 3st in weight but to be truthful I wasn't eating well as was so stressed at worrying why I didn't feel right or well, from then on though I have piled the pounds on and am actually 2 stone heavier than when this started so a 5 stone swing !! speaking to MND association they said it was unheard of to put that much weight back on -I am still exercising as much as possible and today for example walked 3.5 miles which again I was told if could walk two miles plus after nearly 3 years of symptoms that would be unheard of too.

                        I have to believe what the Neuros say but still struggle to get my head round it .

                        Thank you again for your post and I wish you all the best fighting this awful illness.

                        Best

                        Andy

                        Comment


                          #13
                          Hi Andy

                          Thank you for your good wishes

                          Originally posted by AndyM View Post
                          Do you mind me asking what you mean by typical shape connected with arm onset
                          Err - picture tells a thousand words, and all that stuff

                          There is a picture in this article, which may help your understanding?

                          https://onlinelibrary.wiley.com/doi/....1002/jgf2.213

                          Or this?

                          https://www.researchgate.net/figure/..._fig1_51815003

                          I guess I remain cheerful because I have support and a clear diagnosis - I can only wish that you get satisfaction for yours
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                          "Things turn out the best for people who make the best of the way things turn out"

                          Comment


                            #14
                            Thank you for replying Andy -although I feel like have lost muscle mass on hands they do not look like anything in the photos on thes articles ,I will have to accept what has been said and battle on but still haven't got the clear full explanation as to what is happening to me.

                            I thank you again.

                            Best

                            Andy

                            Comment

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