No announcement yet.

I’m so terrified

  • Filter
  • Time
  • Show
Clear All
new posts

    The part about EMGs is that they can detect denervation (loss of axon) and re-innervation (growth of new axon) caused by ALS. This is a big reason they allow the EMG tests to be part of the diagnosis. The criteria originally excluded anything outside of the clinical exam, but enough evidence has proven that this is a strong diagnostic tool. Other conditions can cause the damage as well, and that is why they must rule out everything else before they can rule in ALS. MND is an umbrella for several related conditions, like PLS. The EMG's you have had should start showing de-nervation (fibrillations/fasciculations). They should also start demonstrating long MUP's which indicate re-innervation. Without this, you can be sure it is not MND. EMG diagnostics can be complex, and most laypersons have little idea what all this means, so I tried to simplify it so you get a little understanding.

    BFS will not show denervation or re-innervation. This is likely what the tech saw when he said BFS in your 2nd EMG. Still, the accumulation of symptoms should put a red flag on your medical file. They need to find out what is causing this condition. You are your best advocate at this point. If they tell you it is not ALS/MND, then your next reply should be asking what it IS, not what it is not.

    Mattew and the others also gave you a good suggestion. This is a very stressful time in your life, and it sounds like you are worrying beyond imagination into some very bad places. Fear is natural and that is where it takes you. Speak to a psych and tell them what you are going through. I do not think you are crazy, but I do know that they can give you something to take the edge off of your stress.
    Last edited by Johnny5; 10 November 2021, 21:54.


      Thank you for all the replies

      I know what has caused this it’s the spontaneous Cranial leak I had in April. If only I’d gone to hospital. Instead of waiting and seeing that awful GP I had.

      My breathing is now effected and really shallow and in reverse to what it should be.

      The clanking of jaws in the night bit my tongue last night and I woke up with a huge start tasting the blood in my mouth.

      I feel like I won’t be here by the end of the year.

      I was reading a link about tau protein found in lumbar puncture which gives a worse prognosis.

      My spine showed calcification which could have been caused by that.

      Last EMG was end of September which showed Nerve cond late F waves in 5 areas.

      Everything is changing so quickly, literally.

      Lisp is now noticed by people I’m being sent to a speech therapist urgently as GP thinks will get me Neuro appointment quicker.

      I just want to keep this as a diary of what Is happening.

      GP has given me sertraline and diazepam. I’m really struggling I hope it’s ok to say that here. I know what this is if only I could turn back the clock.

      kind wishes to all and I hope all are getting by as best as you can.


        Can’t seem to sleep for more than 2 hours at a time I either have a horrible snort that’s developed and wakes me or my tongue is bleeding. Tiny ripples all over calf and foot tonight. 2FD18690-000A-4E94-8F81-36F4A0D80E80.jpg my calf is literally half the size it was, and my shin bone now completely visible all the way up leg.

        apologies again for my postings but I want evidence of what’s been going on as it’s just all occurring so rapidly.
        Attached Files


          Do you take anything to help you drop off?
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


            Dr keeps giving me Valium but I have to take a couple at a time. I’m not allowed drink in refuge and I wake every couple of hours with the jaw clashing thing, or sound odd gurgle grunt. Salivas so thickly pooled. I don’t take them when I have my daughter with me. I can’t carry on much longer like this to be honest. I’ve been put on sertraline too.


              Ask your gp for a sleeping pills. They help you to drop off but they don't knock you out.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx