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I’m so terrified

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    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


                Could do with something to knock me out to be honest. The diazepam don’t seem to do much.



                  MRI of spine
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                  This gallery has 2 photos.


                    Does anyone know if it can bring on early menopause or affect periods the last two months have been all over the place after 48 years of clockwork timings. Sorry to the males to ask but it’s all happening so quickly I can’t keep up with my body.


                      Constant feeling of sticky saliva, every joint clicks as I move others are noticing. I Cried and had a jaw spasm which I literally had to hold to stop. I’ve started sleeping with my mouth open which I never used to do. Sleeping on side I don’t seem to get the jaw snapping tongue as bad. My friend videod my tongue alive at rest yesterday. Neuro barely looked in my mouth just asked me to press tongue into cheeks. I’ve kept a record of everything.

                      sending my thoughts to you all. I’ve looked at a couple of Facebook faces I’ve every single symptom I’ve had to stop looking though as some of the stuff is very sad, pictures etc.

                      my musings will be a world record thread and I hope you don’t mind me taking up this space. I’d hoped and thrived to get better, not worse.


                        Hello Helen

                        I'm sorry that this is still a concern for you. We've discussed your symptoms at length many times, both on the forum and on the telephone. The symptoms that you have are not typical symptoms of motor neurone disease (MND).

                        You need to discuss your concerns with either your GP or a neurologist. Whilst the forum is here for people with MND as well as those who may have MND, it is not an appropriate place to discuss concerns. Many of our members are people living with MND and it can be quite distressing for them to have people who don't appear to have MND, posting about symptoms and asking for advice.

                        If you'd like to discuss your concerns further then please do give us a call on 0808 802 6262.

                        Best Wishes

                        MND Connect Adviser
                        MND Connect
                        Contact us on 0808 802 6262 or at [email protected]


                          I apologise for offending anyone on here.



                            firstly I can 100 percent see how My previous posting has been not really appropriate and again I apologise for anyone I’ve angered or upset. This was never my intention I can’t reiterate that enough.

                            I had my first abnormal EMG on Thursday. I am very worried. I have an appointment in Sheffield on Tuesday having to travel a great distance. This is NHS and I hope and praying someone who will listen. I was fitted in within 2 weeks and for this I’m so grateful.

                            May I please use this thread in the future for some support as I’m very lonely in all this. Understand little of it all.

                            I move a week on Monday with my daughter. She’s amazing. Masking all this is becoming hard though.

                            I understand everyone of you everyday has little energy for undiagnosed people like myself. I’ve spoke to Jackie at mnd connect at length she’s been so kind. Friends of 25 years seem to think ‘you’re ok you had that test in august’ the 2 close friends have read there’s more to it than that have seen my symptoms and understand. Admitted they’d be terrified too.

                            Again I accept my posting has been innapropriate and I’m very embarrassed when I read back.

                            sent with utmost respect from a really worried Mum of 1.

                            Wishing only kindness and good things to all



                              Helen212 Glad you have a follow up consultation so soon. Of course people will give you support based on their experiences- remembering that none of us are medically qualified.

                              If you feel embarrassed about some of your previous posts on this thread, why not start a new thread with a less scary title? I have to say every time I see ‘I’m so terrified’ it makes me feel really anxious and uncomfortable!

                              Best wishes for this week.
                              Diagnosed October 2020 - See my blog at


                                Originally posted by Helen212 View Post
                                I have an appointment in Sheffield on Tuesday
                                With which Neurologist?
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.