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Very concerned about my symptoms

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    Very concerned about my symptoms

    Hi everyone

    I am seeing a neurologist on Thursday, a wait of 3 months.

    When I first saw my GP I was worried about pain and tightness that I had been suffering in my left calf muscle for 5 months. Pain and hot/cold sensations in both fert and laterally shin and subsequently stiffness in my left knee that had started and gradually become worse.

    I have noticed a prominent dent thenar muscle and loss of dexterity feeling in that hand although my hand strength is ok at 115lbs in a test

    Since then the symptoms have got worse and spread rapidly.

    I now have onset of stiffness in my right knee and pain, tightness and feeling of weakness on my right bicep.

    Intermittent diaphragm pressure and discomfort and feeling of breathlessness....but this seems to come and go and not been present for a few weeks. Also tightness under my jaw and side of face.

    most alarming symptom is the left leg left knee is incredibly stiff and thigh muscle now feels v v heavy/leaden/dead. I still walk ok but obviously with discomfort and effort due to left leg. The feeling eases after 15 minutes or more and feels not to bad after that. When I get home after an hour or more and sit down ....when I get back up it's as bad as ever. I have had thr knee frayed and it came back normal.

    I have also been suffering this last month with twitching and jerks. Twitching has been in feet calves knees shoulders and arms. Since I started taking magnesium and vitamin d they have subsided by 90% but still get them. Also get the involuntary jerk in my left foot and left hand only in bed at night.

    I am 53 years old, male and weigh 18.10 stone. No unexpected weight loss observed

    I guess my question is this a typical picture of mnd onset or not. I am obviously incredibly anxious as have children and my own business. I am obviously incredibly anxious...sleeping v little and think this is making me feel even more unwell.

    Thanks all in advance.


    Be patient and why worry about something that hasn't happened yet? Stay Strong 👍


      Hi G, I’m sorry about your worrying symptoms and your understandable anxiousness. My start of MND was nothing like you’ve described but we are all different. One thing that I will say is that whatever symptoms you have got missing out on sleep is likely to not help at all. It’s harder said than done but I would try to put it all out of your mind and do some sleep hygiene things to try to make your sleep more regular. Good luck with your neurologist appointment. Keep in touch and 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.


        Lynne and Matthew, I really appreciate your replies and advice. Thank you. I will see what Thursday brings and go from there and report back. Thanks again. Guy


          I should point out that I am 55 and 11st. First time since being a teenager. 😃


            I laughed at that Matthew 😂 there's an upside to everything I guess! Hope you're having a good Sunday


              My day will be completed if my Tottenham get the win 😃


                Good luck with neurology appointment. Pre diagnosis of anything is a stressful time Best wishes from Mary


                  Thanks Mary, much appreciated.....and Matthew ....they so nearly did!

         I saw my neurologist on Thursday. I spent first 15 minutes going through chronological order of symptoms and their progression.

                  He did a examination...strength tests in limds, fingers, reflexes, walking toes, babinksi and hoffmann tests all were good. The one test I failed on was the Vibration Sense Test to my big toe and boy part of my ankle with a tuning fork. I could not feel vibrations on either foot.

                  He said he I don't have mnd but that he feels some sort of neuropathy is going on.

                  He wants me to have a emg and nct asap. This surprised me. I though blood tests and mri of head and spine were the first tests done.

                  I'm obviously concerned why he wants me to go straight to an emg. As good as it was to hear him say that I don't have symptoms continue...the right leg catching up quickly with the left with stiffness and percieved weakness. Sporadic twitching. Numbness sensation in toes increasing as pain, aching and burning sensation in both lower legs.. esp shins and ankles.

                  He hopes I can get it done before Xmas. So that's where I am atm guys. Any thoughts or observations gratefully received.

                  Hope you all have good weekends.

                  Take care



                    The debt every man has to pay. But at least we can have fun getting there. 👍


                      Guy, have a look at this link. I was first diagnosed with CIDP in October 2019. I originally suspected MND, but consultant thought CIDP more likely. There is treatment for CIDP but after two treatments, with no effect, he started to doubt the diagnosis. Finally, after the third EMG and NCS in July, he concluded MND more likely. I don't fault the doctor in any way, it's very difficult to come to a firm diagnosis quickly. He said that if he diagnosed MND and then later it turned out to be CIDP I could have wasted time not being treated, which would be worse. I had no pain or loss of sensation in my hands just weakness, which was why I always suspected MND.

                      Each day is made easier with a bit of humour.


                        Originally posted by manfromcowes View Post
                        He said he I don't have mnd but that he feels some sort of neuropathy is going on. He wants me to have a emg and nct asap.
                        You don't have an MND, that is such good news for you.

                        It makes perfect sense to have an EMG & NCS if a neuropthy is going on - the sooner the diagnosis, the quicker the intervention.

                        Hope you find answers soon.

                        Love Ellie.

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


                          Thanks Ellie. You're right of course in regards to getting this done and getting a diagnosis and treatment.

                          Gary thanks for this - much appreciated. I will have a look at this link and have a read. I'm so sorry to hear your diagnosis has gone the wrong way for you. I hope it's slow progression.

                          Matthew always good to hear from you and your positivity!

                          I will crack on and get this test done guys and report back when I have any results or feedback.

                          Take care in the meantime



                            Guy, I’m very pleased that you don’t have mnd and good luck with finding out what dammed thing it is so that you can get on the right treatment quickly, love 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 Gary,

                              Its great news you don't have MND. I really hope you have the tests you need and get some answers soon.

                              Thanks for keeping us updated,
                              Love Debbie x