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Thread: National Neurological Hospital Visit

  1. #1
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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. #2
    Forum Member nunhead_man's Avatar
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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    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

  4. #4
    Forum Member nunhead_man's Avatar
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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    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

  6. #6
    Forum Member Ellie's Avatar
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    Quote 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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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    Thank you Ellie x

  8. #8
    Forum Member Terry's Avatar
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    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; 26th November 2019 at 17:57.

  9. #9
    Forum Member nunhead_man's Avatar
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  10. #10
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    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

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