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    Hello

    Hello everybody, My name is Les. On 14th February 2022 (Valentines Day), I went with my wife of 37 years, to see a consultant neurologist who gave me a diagnosis of MND. As you can imagine it put quite a crease in Valentines Day.

    On 28th December 2020 I did my usual 30 minutes on the exercise bike, spent about an hour on ladders fixing a security camera at home and then had to walk 1.5 miles into town to do a covid test prior to invigilating at the school I worked at, the next week. When I arrived at school I found I could no longer lift my left foot. After the covid test I then had to walk back home. Up to this point I had not got any major health problems or major disabilities other than arthritis in my right knee ..... not good when the right leg is now having to carry the left leg.

    Due to covid it took until May 2021 to get an appointment with a GP and I was diagnosed with Drop Foot. From there I had several MRI tests and a Nerve Conductivity Test.

    As well as 'drop foot' I also now suffer from swelling to the left foot and toes and my leg goes cold from the knee down and my foot/lower leg are constantly red/blue. I am not sure when the swelling and change in colour started. The consultant who carried out the Nerve Conductivity test/EMG had to keep putting my foot in a bucket of hot water to try and warm it up to do the tests. Every time I took my foot out of the bucket my leg went cold again straight away. The MRI tests did not disclose any trapped nerve in my back or down my left leg and using the results of the Nerve Conductivity test/EMG, I was given the diagnosis of MND.

    I have since had MRI's on brain, lumbar and spinal column with nothing disclosed out of the ordinary (I am 63, so as with the other MRI's there is some degeneration on the discs). The MRI on the spine/neck did show a trapped nerve in my neck which I have had since a serious car crash in 1981. I have also had a second Nerve Conductivity test/EMG. Again, my leg was very cold and the consultant kept trying to warm it up with hot blankets.

    Letters have been sent to my GP stating I have MND and another stating I have Anterior Horn cell disease.

    At the moment my wife and I are still trying to come to terms with our situation. I have gone from being able to walk 5 miles a day down to a slight hobble and great difficulty in climbing stairs. I have bought an Xtern Turbomed AFO, which keeps my foot up and allows me to walk up to 1 mile with a walking stick. I have no power in my lower left leg and have muscular atrophy to my calf. Over a period of time I have developed a stronger left quad which appears to try and do the job of the calf. This in itself causes a number of problems as it gets tired very easily and becomes tight. I do not suffer any breathing problems at this time and do not suffer tiredness after exercise other than to my left quad.

    I do regular stretching exercises as prescribed by my physiotherapist and have regular massages to my back and left leg to help relieve the tension in my muscles. If anybody needs a massage in the Lichfield area I can certainly recommend someone very good.

    I am not sure how much to put in the opening log but thought it might be useful for others to get a brief insight as to how I arrived here. Sorry if I have put too much information.


    #2
    Hi and welcome. It takes time for the shock to settle. You sound like you are keen on managing your abilities etc. You will get lots of hints and tips from the forum.
    Diagnosed May 2021 bulbar onset als.

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      #3
      Hi Shelly21, thank you for your comment.

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        #4
        Welcome to the forum lesc ...sorry you find yourself eligible to join our club but you'll find lots of useful information & tips on here.
        Its a friendly space.
        Take care👍
        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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          #5
          Hiya lesc
          Welcome to our club, but sorry you are eligible to join.
          Your history and diagnosis story is very similar to mine. You will meet a friendly bunch here who know exactly what you are going through.
          Keep posting.
          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.

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            #6
            Thank you all for your warm welcome. As you say, not a club we want to find ourselves eligible to join but it is nice to know there are people out there willing to lend and ear and give advice.

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              #7
              lesc welcome to the forum. A good source of information, support and humour.

              Mine also started with footdrop.
              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                #8
                lesc Hi and welcome. Sorry you find yourself here but you will find a lot of help and support when you need it.
                Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                  #9
                  lesc A warm welcome to the forum Les and thanks for the informative post.

                  In case you are confused, Anterior Horn Cell diseases are progressive degenerative diseases of the motor neurons, including MNDs, so unfortunately not a 'get out of jail free' card by any stretch of the imagination...

                  Long may you stay active.

                  Love Ellie xx
                  ​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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                    #10
                    Hi lesc, sorry you have joined us, but you have joined an amazing group of people who amongst the kindest and most supportive I have found.

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                      #11
                      lesc. Not everyone can join this very exclusive club. This forum is a life saver for me in keeping me sane right now and chatting to people who know exactly what's it's like. From my own perspective i felt life could not continue but everyone here has proven me wrong. So please keep posting. And your post. Wasn't too long by the way it s what you felt you needed to. write. Everyone here has a wealth of info so please utilise it. Keep strong and. Positive and above all keep talking online here x

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                        #12
                        lesc welcome Les. The forum is a great place to share thoughts, give and receive support and learn from others. For instance, I’ve just learned about anterior horn cell disease. Never heard of it before. Look forward to your posts.
                        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                          #13
                          Hi Les,
                          sorry you find yourself here but we are all in this together and will support you as best as we can.
                          James
                          Foxes Never Quit 💙

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                            #14
                            Welcome to the forum lesc - so sorry to hear you have had this diagnosis.

                            The forum is a great source of information and support xx
                            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                              #15
                              lesc

                              Welcome to the forum but sorry about your diagnosis. You will get help and support from the lovely people on here. x
                              Diagnosed 3rd November 2021 Bulbar Onset

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