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I'm Not Diagnosed yet but....

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    I'm Not Diagnosed yet but....


    I have had a nerve conductivity test and they think I've got Kennedys. I have looked online and I have EVERY symptom pretty much. Due to Covid lockdown I won't see a neurologist until end August!

    I have been going to the GP for more than 10yrs asking about each new symptom and been misdiagnosed/fobbed off. They put me under an Old person specialist even though I was 53 and I saw him once a year. He decided I had Essential Tremor. Each year I saw him I felt like I had one chance to investigate one of my multiple issues. This year I pushed my right leg not working and that led to the nerve tests.

    I find it amazing that I have been told about the results in the PS of a letter sent between this specialist and my GP which they knew I'd read. An appointment card for August then came but that is all I have had! I am left with no advice, any way of asking questions, no-where to turn. Trapped in a house with my wife who I don't want to over-burden. Can't even go out.

    Because Kennedy's is heredity I have not told my wider family as they may then worry if they are carriers or next potential victims. There are no male relations alive to ask if they have symptoms. No sufferers to my knowledge.

    I have...
    Internal shaking - stomach, bowel, sometimes neck or head
    I cramp up when I make even simple movements
    My throat half closes over like a cramp. I can still breathe and I can then relax and it passes
    Recently a fat tongue - talking takes some care
    My right leg flops as I walk - varies day to day
    Toes bend and numb - some pain usually at night
    I have become very doddery on my feet
    Can't carry a cup - hard to type on a smartfone - my arms are like they are angry
    My mouth droops on one side for a bit like the stroke effect - and then recovers
    My neck is weak and I get terrible headaches - pain
    I lost legs muscle about 9yrs ago - I lost arms muscle about 4yrs ago
    One of my man areas has reduced in size
    I'm overweight but when I did lose weight previously the moobs never went away.
    I choke on food if I'm not careful
    I am always clearing my throat
    My eyes shake sometimes
    I feel a flushing on my skin

    Probably other things too.
    Now I am looking at an actual condition, alot of other things now make sense (like moobs),

    I know I need to recalibrate my brain with all this.
    I know my life will be changing dramatically. And the long term doesn't bear thinking about.
    I've read I need to value what I have - and not the above list.

    I guess I am looking for a place I can talk about it without burdening family.

    Best wishes to you all.


    Hi R and sorry to hear of your potential diagnosis and how your very thoughtful Neurologist suggested Kennedy’s as a potential diagnosis

    I know very little about Kennedy’s but have you not had a genetic test - surely that would confirm or rule out you having the condition? (Your symptoms do unfortunately tie in with many seen in Kennedy’s)

    I’m sorry too that your appointments have been pushed out by the turmoil the world currently finds itself in - any chance of getting a video appointment, I wonder? Even community support may be hard to engage right now - you really need to be assessed by an Occupational Therapist (OT) but you also need to avoid getting Covid-19!!

    I hesitate somewhat to post a link about Kennedy’s, given you aren’t diagnosed, but it’s easily found so here it is (decide if you want to read it)

    also further support
    Support with Kennedy's disease can improve quality of life when living with or affected by this rare condition, that progresses slowly.

    It must be so hard keeping this to yourself, especially at these isolated and frightening times - if there isn't anyone in your family you can talk to, maybe ring MND Connect instead of keeping it bottled up?

    Take care and stay safe.

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


      Hi Ellie,

      Nice to meet you.

      I won't get a genetic test or a diagnosis for months.

      I have been reading up and even talking with KD people.
      I have decided I will talk to my family if I need to. But fr now I am a lot calmer this evening. I can see a future a bit better - I think initially I put myself in the chair like Stephen Hawkins starting tomorrow! And although my current deterioration is a bit worrying, I am now seeing myself still being reasonable in two years - and if that is true the need for doing everything now is receeding.
      I'm taking my one a day walk and will try to get more mobile.

      It's hard - I'm a bloke so I want answers, to build a purpose-built house etc. all now. But it's not practical - but I am calming down as I say.
      I wanted to talk about everything - but my wife can't cope. So this forum and Samaritans just to talk it though has helped hugely.

      I hope life is manageable for you.
      Thank you for your kind message and I hope I can be a friend going forward.



        Good morning R, welcome to forums. I too don’t know much about Kennedy’s disease. You certainly have been on an unsuitable NHS journey . I hope that you can, as Ellie suggested have a sooner video conference with your intended neurologist and their team (physio, dietician, possibly OT etc). Ellie’s suggestion to ring MND Connect is a good one. You need to speak with somebody who’s fully conversant with your suspected condition.

        In the meantime this forum is a good place to offload, make forum friends and even have a laugh. Take care, Lynne
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.


          Hi R and a warm welcome from me to our friendly forum,

          I am so sorry for your suspected diagnosis. I dont know much about Kennedy's either but it must have been such a shock, especially to find ot what was suspected in the way you did.

          It must be awful now to have to wait for a neurologist appointment until August and not be able to access the practical and emotional support needed at this time.

          I really hope you find someone to talk to instead of bottling things up because it does help. Your imagination must be running riot , especially as you are isolated in the house. Sometimes it is easier to be open about our fears with people we dont know so Ellie's suggestion of ringing MND connect is a good possibility.

          Take Care of yourself and if you can try and take one day at a time. ( easier said than done I know!)
          Love Debbie x


            Hi Lynne,

            Sorry for the delay. I'm still working at the moment - although I have now been sacked due to Covid!
            But I wasn't going to go on much longer. Not directly due to this just how hard I find work - which IS I suppose due to this.

            I am doing quite well thanks. Partly denial, partly why worry about something longer term while we have Covid stalking us now. I've talked to my friend, my sister, on here and on the Kennedy's forum and yes it helped me alot. Helped me part-absorb part question it all.

            This form is not as life-limiting as MND but the rate of progression for me is unknown. For now I can do a good impression of a normal person and there isn't anything I fully cannot do. So I need to be more of a glass-half full person. Once if ever Covid allows us back out into the World I will be trying to life life.

            I feel like I only have one go at speaking to the consultant - so I am waiting until I know fully what I am trying to get out of it.

            Thank you for replying and yes I am up for a laugh!

            PS male badger


              Hi Deb,

              I've sort of come to terms with having to deal with this without proper help - at least for now.
              It's mad but I have found the health service to be cr*p and have always let me down. Maybe that will change in later life - who knows - and I help you guys experiences have been better.

              As I said above I am dealing with it OK thanks to a heavy dose of pessimism lol.
              What makes me think I will live long enough for this to be an issue :-)

              I have here and the great Kennedy's Facebook page to ask the odd question and consult fellow sufferers and here too.
              I worried about telling my sister (as this is heredity and her kids may be affected - but she is good in a crisis and she was great on the call I made.

              Covid lockdown is the worst thing about all this. You want to visit family and even travel while I can ....but oh no!
              I am trying to enjoy the sunshine, even the awful TV.

              Thank you so much for your reply.
              Stay safe

              Badgie xxx