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    Hi from Peter in Nottingham

    Hi, I'm awaiting referal at the moment, but I'm 99% sure I have MND/ALS.

    Injured my knee a few weeks ago and then noticed why, my calf is wasted towards the lower portion. I have most of my strength probably about 80% but I have most of my body effected including my jaw (tiring chewing big meals) and some tightness in the back of my hands. Also have constant rippling cramp in the effected calf and the thigh above it started soon after. I wake up with twitching and cramping in my neck also.

    I didn't realise that some while ago I was already a bit hoarse and struggling with swallowing when in bed laying down, really not sure which came first, the leg or the bulbar stuff. I thought I've been loosing my confidence and fluffing up words in the office, I can talk just fine and maybe it's anxiety but it does seem one hell of a coincidence.
    I'm also loosing weight even though I'm trying to put it on, lost about 7kg in 6 weeks. Did anyone else have digestion issues long before other symptoms, as I have had for a long

    Anybody know the details of Nottingham area based consultants and departments. I'm trying to get to see David Paling in Doncaster as I think I will be waiting a while on NHS!

    This really is my worst nightmare, I'm sure likewise for most. I have a 5 and 7 year old, and when I just about have it together I think about telling them and not being there for themand it breaks me all over again.

    Trying to make good memories and take one day at a time.

    Still at work at the moment and trying to hide the symptoms until I have a diagnosis, it's hard. Ot spending every available minute with my wife and kids.

    ​​​​​​​I guess my next steps are consultation and EmG etc to confirm.

    Thank you all and my best wishes for your struggles.

    #2
    Hello Peter. Wait until the large lady starts singing. Where there is life..... Good luck.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      Welcome Peter. As you know there are other diagnoses and you may have something entirely treatable. I didn’t have any digestive issues before diagnosis by the way.

      I can understand why you are trying to hide the symptoms but perhaps you don’t have to and I’m sure it’s a big effort. People may be noticing that you’re not your normal self and arguably it’s better that they know about your concerns so they can give you support.

      it’s great to just take one day at a time. Best wishes
      Last edited by PeterPan; 31 March 2022, 12:35.
      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

      Comment


        #4
        Hi Peter. Welcome to the country no one wants to be in. You will find this a friendly place full of good advice and kindred spirits.9

        Comment


          #5
          PeterDaviesNotts try not to 'jump the gun'🙏
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #6
            Hiya PeterDaviesNotts
            Here's hoping that we DON'T have to admit you to our exclusive little club.
            Hi, I'm Eddie.
            Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
            Still walking and talking, and wondering what the future will bring.

            Comment


              #7
              PeterDaviesNotts What did your GP say Peter?
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Originally posted by PeterPan View Post
                Welcome Peter. As you know there are other diagnoses and you may have something entirely treatable. I didn’t have any digestive issues before diagnosis by the way.

                I can understand why you are trying to hide the symptoms but perhaps you don’t have to and I’m sure it’s a big effort. People may be noticing that you’re not your normal self and arguably it’s better that they know about your concerns so they can give you support.

                it’s great to just take one day at a time. Best wishes
                Hi Peter, yes it's quite difficult but I want things to remain for as long as possible. Your blog is brilliant by the way, it's great to see how your life has gone on and had happy and meaningful times even with this illness. I hope I'm a strong and courageous as you if I get the diagnosis.

                Comment


                  #9
                  Originally posted by Ellie View Post
                  PeterDaviesNotts What did your GP say Peter?
                  Hi Ellie, they wanted to do bloods and poo sample first. They came back fine so after that the private GP was happy to refer, the NHS doc was happy to refer to Neuro before bloods. I have one referal on NHS pending and I am going to get a private one sooner so I have two opinions and fast track to a degree. My concern is the test costs privately as my insurance is through work and not yet approved and only up to £1k diagnostics.

                  Comment


                    #10
                    Originally posted by PeterDaviesNotts View Post
                    it's great to see how your life has gone on and had happy and meaningful times even with this illness.
                    Hopefully you haven’t got this illness, Peter. But for those of us who have had the diagnosis, it’s not the end. It’s the beginning of something new.
                    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                    Comment


                      #11
                      Hi Peter.

                      i know how this feels. But I have had my diagnosis already. So hopefully for you you will not have something MND related.
                      i too have children they are 11 also quite young. I have been diagnosed with ALS but with what seems with slow progress. I still work and have not told anyone there yet. Stay strong

                      Best wishes
                      Marc

                      Comment


                        #12
                        Originally posted by PeterDaviesNotts View Post
                        I'm 99% sure I have MND/ALS.
                        I'm trying to put your above statement in context, which is why I wondered if your GP found anything which lead you to be "99% sure" you have ALS, or is that your personal assertion: were any weakness, function issues or deficits found by the GP?

                        I hope you don't have long to wait to see a Neurologist.


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

                        Comment


                          #13
                          Hi Peter. In the best possible way I hope you don’t need to remain with this group but if you do you are very welcome. While ignorance is bliss it seems as though you are already well informed so the quicker you get a diagnosis one way or the other, the better. We’ve all got many similarities and many differences such is the nature of this condition, but one common theme is support for each other and that’s very precious. Best wishes to you.

                          Comment


                            #14
                            Originally posted by Ellie View Post

                            I'm trying to put your above statement in context, which is why I wondered if your GP found anything which lead you to be "99% sure" you have ALS, or is that your personal assertion: were any weakness, function issues or deficits found by the GP?

                            I hope you don't have long to wait to see a Neurologist.

                            Hi Ellie, its mainly the fisculations/constant tingling type cramps in the left leg with some strength loss. GP said she could not say either way but both GPs were quick enough to refer me. I'm measuring the calf and testing strength regularly, so I can see I trend before the referrals.

                            The neuro I have selected is mainly MS focused but there are not many around here with MND listed. Maybe NHS will find a good one 😉

                            Comment


                              #15
                              Originally posted by PeterDaviesNotts View Post
                              I'm measuring the calf and testing strength regularly, so I can see I trend before the referrals.
                              People cannot subjectively measure their own strength...

                              Re Consultant Neurologist: just a suggestion Peter but, if you're paying for a private consultation, wouldn't it make more sense to travel further and see an MND Specialist? My feeling is if Dr P, an MS Specialist were to say "no ALS", you'd say, "well he cannot possibly know, he's just an MS Specialist" and, in your mind, the consultation will have achieved nothing.

                              FWIW: stop "measuring the calf and testing strength regularly", it's classic anxiety behaviour and its only outcome will be to increase your anxiety levels = more twitching = more anxiety and so on.

                              Be kind to yourself!
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment

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