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Bulbar symptoms and clean EMG

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    #31
    More info:

    Current Landscape of Treatment Options for Patients With Amyotrophic Lateral Sclerosis (ALS)


    February 15, 2022
    Supplements and Featured Publications, Current Landscape of Treatment Options for Patients With Amyotrophic Lateral Sclerosis (ALS),

    "Exploratory study findings noted a mean time from symptom onset to diagnosis with ALS of approximately 19 months and a median of 12 months"

    (There is no "rule" on how long it takes.)

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    • Given no blood tests yet (disappointing), ask for a spinal tap. Our spinal cords fall apart with MND and your neuro may test for that.

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        #33
        Originally posted by Oliveroldc View Post
        I talked to my consultant about that test and they don't offer it in ireland. I can see from the Web that svar life sciences in Sweden do it but I don't think my neuro will sign for it as they say its research only at this stage. Has anyone on here actually got that test? Are there places in the UK offering it. I didn't see any on Google.
        Hi Oliver,
        I hope you're doing as well as can be expected. I'm just checking whether you found out anything more about the nfl blood test from Svar Life Sciences? I've also had ALS worries for a while now - recently allayed by a neurologist, but no othere explanation offered for worsening symptoms - troublingly, and I'd be keen to potentially have the test. But it's hard to find info on it. I'm not even sure whether it can actually reliably diagnose ALS, or more importantly, rule it out.
        Let me know if you have any knowledge,
        Flex

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          #34
          Just an update i had another EMG and it showed PSW/Fibs increased duration and amplitude and reduced recruitment in my calf and thigh muscles. Im totally inconsoleable. Will have a follow up in Beaumount from my diagnosis next week

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            #35
            Dear Oliveroldc,

            If you would like to talk to a member of our helpline team, MND Connect, please do call them on freephone 0808 8026262, they are here to support you.

            Kind regards
            Forum Admin
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]

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              #36
              I'm very sorry to hear that Oliver. I hope you don't get the diagnosis you're fearing.
              Last edited by FlexyWex101; 21 May 2022, 16:57.

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                #37
                So even though i have 2+fibs 1+psw and 1+ amp, 1+ duration and reduced recruitment in my legs. My professor neuro still doesnt think its ALS.

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                  #38
                  Originally posted by Oliveroldc View Post
                  So even though i have 2+fibs 1+psw and 1+ amp, 1+ duration and reduced recruitment in my legs. My professor neuro still doesnt think its ALS.
                  "Legs" - both legs? Multiple muscles?
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #39
                    Both calf muscles. S1-S2

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                      #40
                      That's odd - can you post the EMG results?
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                        #41
                        Screenshot_20220602-215028_Write on PDF.jpg

                        is that visible Ellie
                        . Tbh besides twitching in my calfs i have zero probs with them. The main issue i have is with my tongue and it was normal
                        Last edited by Oliveroldc; 2 June 2022, 22:08.

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                          #42
                          That's one muscle - have you the summary/conclusion page?

                          Either way, I don't think anyone is going to disagree with your top professor...
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                            #43
                            Summary says acute denervation with partial chronic reniveration. Possible L5-S1 radiculopathy. However i have had spine mri and it was fine, Prof Aisling Ryan reviewed the findings and shrugged them off so im just going along with it.

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                              #44
                              Originally posted by Oliveroldc View Post
                              im just going along with it.
                              That is music to my ears and I truly hope you can stick to your plan and start living - life is precious.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                                #45
                                Will do, thank you Ellie

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