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    Neurologist suspects totally inconsolable

    Hi.
    I have wrote a few posts,today I went to see my new neurologist.
    He looked at me did a assessment and I also explained my symptoms all in the space of 5 months.In his 27 years of neurology he’s never come across someone who he suspects has mnd with all the symptoms progressing very rapidly all at once.
    started muscles twitching,aches ,then no sleep because of the constant pulsing, muscle cramps, fatigue,tongue twitching,toes and fingers stiffness, the constant nervousness in my stomach all the time, phlegm in the back of my
    throat all the time, jaw ache, voice changing legs started to feel very heavy , hiccup twitching now all the time right leg drops for a few hours then gos back to normal which he couldn’t understand,arms feeling week and heavy as is my neck I also have really bad behaviour changes, memories constantly in my head , I can’t focus, Bad breathless,I can’t hold a confiscation, I can be aggressive, I was appalled at my self today as I really shouted at my 7 son, I would never have done that in the past I stare into space a lot.
    I had a emg up in Sheffield results in by the end of the week but my neurologist said prepare for the worst .
    I’m 47 with 3 kids 2 step kids and a wife who’s already under so much pressure and turmoil as my youngest step daughter age 17 has a eating disorder that’s so bad shes very close to being admitted to hospital

    #2
    Hey try and stay strong xx
    this is a horrible disease and an awful diagnosis - I’m 48 with 3 girls youngest is 12 and I was diagnosed on 17th Feb - haven’t worked out how I’m going to tell my girls yet.
    there’s a lot of support on this forum xx
    Diagnosed 17/2/22
    summer 2020 - Left arm onset
    Jan 2022 - breathing now affected

    Comment


      #3
      You both need a lot of support, particularly Earpy. Get it tomorrow.

      Your GP should be able to get things moving but some GPs rarely come across MND and have no clue how fast it can progress. You may need to be insistent and raise your voice in some cases.
      Copyright Graham

      Comment


        #4
        Getting the diagnosis is almost the worst thing because you have a pretty good idea of what you are in for. I had my diagnosis a couple of months ago and was devastated. All I will say is there is a lot of help out there and a lot of kind caring people. It is very difficult but try to keep your chin up and stay positive. It won’t be easy but what else can you do. I hope you can get all the help you need soon. Sorry you got this at such a young age too.

        Comment


          #5
          Earpy Sorry you're going through this - I can see your anxiety levels are through the roof...

          Originally posted by Earpy View Post
          today I went to see my new neurologist.
          Are you in the NHS system yet and is the new Neurologist an MND Specialist?

          Originally posted by Earpy View Post
          I had a emg up in Sheffield results in by the end of the week
          4 weeks is a long torturous wait - do you have to go back to the Neuro for the results, to your GP or are they sent directly to you? (You said you paid for private EMG testing)
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            No he isn’t .

            Comment


              #7
              Paid private

              Comment


                #8
                I don’t understand should be happy the trNeurologist has now said that the emg looked clear. He’s not an mnd specialist.
                I had all the needles in and nerve study I can’t get my head round this . Why I having all these symptoms yet still the emg looked clear

                Comment


                  #9
                  Maybe it’s PLS? My neurologist thinks I have PLS, because I have trouble with UMN only. My EMG was normal too (albeit was done before I started having mega fasciculations), but still diagnosed with a motor neurone disease?? I’m VERY new to all this and have limited answers though.

                  Comment


                    #10
                    Originally posted by Earpy View Post
                    Why I having all these symptoms yet still the emg looked clear
                    Your doctor will answer that question.

                    Great to hear your EMG was normal.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Originally posted by AngieCanuck View Post
                      Maybe it’s PLS?
                      PLS is a slowly progressive motor neuron disease and doesn't present as the OP described.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Today I had to stop the car. My right arm was continuously shaking , then my fingeres and my thumbs ,I felt awful then my legs felt all heavy and I struggled to walk . It’s subsided now . But this keeps happening, but the doctors are all convinced I’m ok cause the emg was clear plus Everyone now thinks I’m ok cause the emg was clear I feel like the boy called wolf but I feel so awful but the worst is the constant nervousness and the pulsing especially at night 😔

                        Comment


                          #13
                          Originally posted by Earpy View Post
                          My right arm was continuously shaking , then my fingeres and my thumbs ,I felt awful then my legs felt all heavy and I struggled to walk . It’s subsided now .
                          MND doesn’t manifest like that and your EMG was normal. OK, you don't have an MND, so what is causing these episodes?

                          Maybe write down your symptoms, go back to your GP and have an honest chat with him/her, see what is suggested.

                          Best wishes.

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

                          Comment


                            #14
                            Earpy - I'm no expert, but you might want to read about Functional neurological disorder (FND) - this condition can present as you describe. Neurosymptoms.org is a useful website - might be worth a read?
                            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.

                            Comment


                              #15
                              Originally posted by Graham View Post
                              You both need a lot of support, particularly Earpy. Get it tomorrow.

                              Your GP should be able to get things moving but some GPs rarely come across MND and have no clue how fast it can progress. You may need to be insistent and raise your voice in some cases.
                              Have done it to many times now they think I’m fine as had 3 emg all clear but today I was terrible

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