Announcement

Collapse
No announcement yet.

So scared. I dont know what to do.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Ellie. Thank you for the reply and some reassurance. I didn't post the summary of the EMG which stated chronic denervation of the bilateral L4 and L5 . Absent peroneal CMAPS AND EDBs are of uncertain significance. I hope this points away from what I have been thinking ...

    Comment


      #17
      Originally posted by Russ3465 View Post
      I hope this points away from what I have been thinking ...
      Yes, it does. That is why 2 Neurologists cleared you of ALS.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      ​

      Comment


        #18
        Hi everyone,
        Can't understand that since I noticed my atrophy in my leg april 23rd which has been aching a little more and the atrophy in my right gluteus on may 10th I have been also experiencing stiffness in my shoulders , arms, hand and legs. With a little aching in forearms and fingers since then. Its 24/7 . Dosent go away. My voice still hoarsed fo 5 weeks. I've tried to de-stress and not doing a good job of it. I've tried some muscle relaxes and zanax . Nothing really helps. The more I try Nd relax my body the more little twitches I feel, also some internal vibrating in shoulders. Just wierd feelings. Fueling my anxiety. Can it all be stress and anxiety? Can this all be happening in 5 weeks to me?
        Next appt with neuro is for Aug 10th. Which would be 3 months since my last visit and Emg test. I wake up stiff and sore and go to sleep stiff and sore. Just having a hard time with this..

        Comment


          #19
          Oh dear, not good Russ. I hope that on the 10th August your neurologist will be able to tell you whatever is happening and give you treatments that will help. Love Lynne x
          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.

          Comment


            #20
            It is horrible for you; waiting another 2 to 3 months to get your next appointment, and hopefully find out more. I hope we will see a final post from you, when you tell us MND has been ruled out, and the cause is curable. My thoughts are with you
            Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

            Comment


              #21
              Hi Russ sorry for what your going through, i myself have had problems for 4.5 years now, i too have chronic denervation but for als you need to have both chronic and acute,which you dont have. Also since a dr who specializes in als told you no als i would take that to the bank. Your tremors are most likely from all the anxiety. Hope you come to terms with this. I live in the states too and know the stony brook clinic.
              mikael

              Comment


                #22
                There is nothing to fear except fear itself. Stay Strong. πŸ‘πŸ€—πŸ˜˜πŸ˜πŸ˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                Comment

                Working...
                X