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Bulbar ALS confirmed...

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    Bulbar ALS confirmed...

    Brisk jaw jerk reflex confirmed. Difficulty swallowing, increased salivation, increased gag reflex, is this bulbar ALS onset? My mouth jerks upward when I strike the middle of my chin and my gag reflex has gotten more intense...

    Hi. So have you had a diagnosis of ALS?
    Diagnosed May 2021 bulbar onset als.


      Originally posted by shelly21 View Post
      Hi. So have you had a diagnosis of ALS?
      Not officially... But with difficulty swallowing, slurred speech, exaggerated gag reflex, positive jaw jerk and facial jerking with tongue weakness, the only thing I'm missing is tongue fasciculations, which only occurs in 66% of cases


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          Confirmed MND... Progressive loss of swallowing function and weakness of neck/swallow reflex


            Forgive our caution, but what we mean is - have you been diagnosed by a Consultant Neurologist?
            That is the only way you can get into the system that can start coordinating care for those with MND.
            Hi, I'm Eddie.
            Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
            Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
            Still wondering what the future will bring.


              Originally posted by Arkotract View Post
              Confirmed MND... Progressive loss of swallowing function and weakness of neck/swallow reflex
              who has confirmed MND? You need to see a GP who will initiate various tests before you receive a confirmed diagnosis. We are not medical professionals. Please see your GP.
              Bulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.


                so you have been diagnosed or not i don't understand?


                  Arkotract The diagnosis of MND is usually something that takes a long long time. In my case about nine years. It is usually a diagnosis of exclusion because it is so rare.

                  Often the diagnosis comes because so many things have come together. I think most try and battle through and make work arounds to the symptoms as we have things to get on with.

                  My falling started nine years ago, so I designed some more comfortable crutches than the ones that were on the market. My choking on liquids started about three years ago and I had to scopes put down, both people saying it was neurological, so I ignored it.

                  Then admissions to hospital for more falls and them asking had I seen a neurologist (and me saying yes when I hadn't because I thought they were saying I was going mad).

                  Then lots more hospital admissions and the nurses telling me to stay in bed because of falling.

                  Then seeing a neurologist privately a year ago and telling me I had a neurodegenerative condition and go and live my life. So just carried on and ignored it.

                  Only in the last few months with more hospital admissions and being told off and diagnosed that I listened.

                  We all hope you haven't got MND.

                  Everyone is here for your support. Everyone has been a great support to me.


                    EMG in the tongue is OUCH. Hurts! not fun.

                    Some of us were diagnosed right off, but that is rare. My first diagnosis took 4 years. Second one was another 2 years. EMG's and NCV's and tests and tests..and then they repeat them over and over until they are certain.

                    You only need to deal with it one day at a time though. Keep it simple stupid I was told, what will be will be. So I stand tall and fake it. This is my life and I live my life on my own terms, its just compromising that is not so fun but I do it just to placate those around me and this monster that wont let go. This is something that none of us wanted, I mean, who would? Its like pieces drop of and you can't put them back on, they are useless. Praying for a cure, but it hasn't knocked on the door yet.

                    Be patient friend. There still may be something else causing the symptoms that only the best of the best can diagnose...hope is the beacon of light in a dark world. Never surrender!


                      Originally posted by Patw View Post
                      so you have been diagnosed or not i don't understand?
                      NO, he has NOT been diagnosed, not that it stops him posting such offensive and outrageous claims on multiple forums...
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                        Originally posted by Arkotract View Post
                        Confirmed MND... Progressive loss of swallowing function and weakness of neck/swallow reflex
                        Has a neurologist given you this diagnosis?
                        Foxes Never Quit 💙


                          I'm experiencing jaw clonus whenever the chin is struck, I'm currently substituting a reflex hammer for a watch face, and that triggers jaw CLONUS about 80% of the time, but, that's likely down to my error, missing the right spot. That means I have jaw CLONUS, slurred speech, difficulty swallowing even my own saliva... It's all but confirmed at this point, and I'm only 19... The only thing I'm missing is tongue fasciculations because my tongue has shrunken in both length and width


                            so its a no then. Well all I can say is i hope you haven't and please until you are confirmed refrain from posting as u are upsetting beautiful people on here.


                              Due to my own 18+ month ambiguous diagnostic journey before confirmed MND (and relatively unconnected complex permanent health conditions clouding part of the diagnostics), I'm sympathetic to anyone coming to the forum with concerns, if they can't get past their GP or local hospital referrals.

                              I do think it is unfair on others on the forum to have a forum heading that gives a message somewhat different to the content.
                              I do empathise with your concerns, as I had early unconfirmed indications of symptoms that were possibly (probably) MND.
                              However, once I had 2 visual suggestive symptoms, my GP promptly put me on a more structured differential / exclusionary diagnostic process, that rapidly escalated to EMG and an interim diagnosis - but, another 6 months of ambiguity.

                              A Doctor of Neurophysiology and a Doctor of Neurology interpreted those results. (There isn't a binary 'yes / no' biomarker, so every aspect of the presentation has to be considered).
                              The diagnosis can then include a consultant sitting back 4+ months then reassessment based on symptoms change / progression.

                              Other rarer and less serious neurological conditions overlap with MND too, clouding the diagnostic certainty.

                              I would strongly suggest putting your symptoms list on a timeline, booking a 'double' GP appointment to talk about it and request a hospital referral.

                              I'd also book a private (experiend neuro) Physiotherapist appointment to assess your symptoms and for them to write up their observations to present to your GP. (This is what got my GP to take things seriously once I had 2 physical symptoms and was waiting for referrals).

                              Your post uses a lot of medical terms, I'm not sure if that is your work background, or what you've read to match your symptoms.
                              It's not going to mean much or impress on a public forum, but is a handy list to mention in your Neurologist referral appointment, as that is his daily language when writing his assessment before giving someone an interpretation of tests and clinical assessment.

                              I'm open minded to your concerns here, but the tone of the post massively alienates and disturbs people who would otherwise be very supportive on practical and emotional aspects if on a confirmed diagnostic pathway.

                              I have personal experience of a local younger person initially being disregarded because of their age and potential MND.
                              In the time between your first forum post and this, their symptoms and disabilities have overtaken my own.

                              You really have to push your GP to consider your concerns and referral to a specialist. Nobody here is going to say "Oh, this is how mine started..." because the condition is heterogeneous and so variable between people.

                              12 months in from my own (initially ambiguous) symptoms, I just wanted to know, one way or another, because you end up putting things on hold with the uncertainty - the only way around that is a Neurologist excluding or confirming diagnosis.
                              The problems don't go away after formal diagnosis. There's also no special treatment, your friends / family will want to limit talking about it too often.
                              No medical professional will tell you rate and severity of progression or 'time left' - your GP will shrug, as there's nothing he can do and will refer back to the Neurologist and how he handles his waiting list, you can visit local MND branches, but you'll meet people in challenging levels of illness and mobility trying to make the best of their lives.

                              Push for that referral from your GP and see what the Neurologist says from your own observations and symptoms.
                              What you have mentioned will not get diagnostic or positive responses from many folk.
                              2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                              Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...