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    #16
    Originally posted by Shepster34 View Post
    ... but I have fibrillations going on all night in bed
    That is impossible to know. Fibrilations simply cannot be felt.

    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #17
      Welcome to our community forum Paul

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        #18
        Originally posted by Ellie View Post
        That is impossible to know. Fibrilations simply cannot be felt.
        Is that true. Ok, the people on fb mnd group said thats what i was feeling. I guess it must be just internal tremors then.

        thank you. It may be my anxiety.

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          #19
          Originally posted by Shepster34 View Post
          Is that true.
          Huh??? I would not have written it if it were untrue...

          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

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            #20
            Facebook is for fun not facts ๐Ÿ˜x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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              #21
              social media clap trap !! showing me age
              Husband Albert diagnosed PMA Feb 21

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                #22
                Originally posted by Ellie View Post
                Huh??? I would not have written it if it were untrue...
                Apologies, i wasnt questioning you it was more of a shocked comment. Lots of them were stating categorically it was fibrillations i was feeling.

                i need to stay off that bloody group. It sent me in a big anxiety spiral.

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                  #23
                  Could i ask a question. I keep seeing fasciculations are a symptom, other sites say not. But how many of you actually didnt have any fasciculations in the first few years of your journey? I dont have any yet and have had symptoms for at least 18 months maybe 2.5 years when i first felt a little weaker in my legs.

                  Or are fasciculations a later symptom once the muscles have started wasting badly?

                  I cant work out if it is a good sign i dont have any or if it doesnt mean anything?
                  Last edited by Shepster34; 16 February 2021, 19:18.

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                    #24
                    I've had them in my upper arms from day one. One year on and I'm weaker but not yet helpless. MND is indeed a path but it twists and turns so much that no one knows where it leads. ๐Ÿ˜x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                      #25
                      Originally posted by matthew55 View Post
                      I've had them in my upper arms from day one. One year on and I'm weaker but not yet helpless. MND is indeed a path but it twists and turns so much that no one knows where it leads. ๐Ÿ˜x
                      Thanks Matthew

                      are you one year on from diagnosis or start of symptoms?
                      Strange I havenโ€™t felt any Fasciculations. I do however have bad tremors internally and in my hands. I havenโ€™t read about this being a symptom but it may be because of my weak muscles.

                      ive been trying to get diagnosed for so long.

                      my neuro keeps telling me I would be much worse than I am by now if it was als but my limbs have become much weaker and thinner this past year. Just no failure yet.

                      im due an emg in March. Iโ€™m currently shielding with my wife so very worried about going for it in a hospital. Part of me wants to cancel but the other half needs to know if I have als.

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                        #26
                        Symptoms start Jan 2020 diagnosis May 2020. If it looks like a duck, walks like a duck.... ๐Ÿ˜x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                          #27
                          Originally posted by matthew55 View Post
                          Symptoms start Jan 2020 diagnosis May 2020. If it looks like a duck, walks like a duck.... ๐Ÿ˜x
                          Sorry for the diagnosis mate, Your neuro did well finding it so quickly.
                          I actually had an emg 6 months after my first symptoms but it was a poor test. He tested 1 leg muscle and 1 arm muscle. I was in and out in no time.
                          To be fair i donโ€™t think I had any wastage at that point, maybe it was too early.
                          he asked me if I had sciatica which I thought was a strange thing to ask. Maybe he found the beginnings of my mnd but she said it was normal.

                          i never saw any results, just my doc stating normal.
                          Last edited by Shepster34; 16 February 2021, 22:10.

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                            #28
                            Shepster my husband was 2 years to get a diagnosis and only got that last week, - probably suffering falls etc 2 years prior to that.

                            He had much twitching to start with but now hardly has any - there are several types of MND and my husband has the PMA version slow progression which is why it took so long so diagnose. He does have slight hand tremor now but the twitching was legs, stomach and chest.

                            We didn't really want to visit the hospital last week but also felt that we needed to know what the score is........they are well prepped for the virus.

                            Sue
                            Husband Albert diagnosed PMA Feb 21

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                              #29
                              Originally posted by Shepster34 View Post
                              Hi im Paul from Yorkshire

                              awaiting diagnosis

                              Ive done another post in the mnd connect section about my symptoms so i'll not repeat myself

                              Currently struggling with it all, very depressed and found out i also have a small air ways restriction in my lungs pribably pulmonary fibrosis. I need more tests to confirm diagnosis. Biopsy most likely.

                              The mad thing is i may have mnd and ipf, both terminal in their own way and because im not diagnosed in either, i cant get a vaccine. Ive rang the hospital and rang my gp, both said nothing they can do until confirmed diagnosis.

                              Im currently shielding with my wife (she has no immunity due to medication) and im working from home. Dreading Boris ending lockdown as my wife will need to go back to work in a shop and the possibility of bringing covid home. Shes gets her vaccination tomorrow.

                              Anyhow, if you fancy a read of what happening to me its in the other section. Its not good and my right arm is fading fast. Although my grip is strong my right arm is very weak and quite painful. The speed im losing weight is worrying. Im nearly losing a pound a day this week. I dont get it. Im eating
                              Paul - I totally get where you are coming from ,I am 4 years and two months from when symptoms started and seen 5 Neurologists and all said not MND but I have bodywide Fasiculations , weakness ,muscle loss in both legs and arms , fatigued etc ,last saw a Neurologist in December 2020 said all issues caused by my spine and that need to lose weight-its brain draining and I just do not know what to do now , the last Neuro said that based on timescale (just under 4 years when i saw him) I would be a lot worse than I am as still mobile ,driving etc -must also point out I have bodywide pain too-All the best Andy

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                                #30
                                Originally posted by Suefromwakey View Post
                                Shepster my husband was 2 years to get a diagnosis and only got that last week, - probably suffering falls etc 2 years prior to that.

                                He had much twitching to start with but now hardly has any - there are several types of MND and my husband has the PMA version slow progression which is why it took so long so diagnose. He does have slight hand tremor now but the twitching was legs, stomach and chest.

                                We didn't really want to visit the hospital last week but also felt that we needed to know what the score is........they are well prepped for the virus.

                                Sue
                                Hi Sue

                                Can i ask what his progression is at now? How has he changed in the last few years? How slow is slow progression? My legs felt weak 2 years ago and have lost alot of muscle especially around my ankles and shins, they are pure bone, but i can still go on my tip toes and havent fallen. I cant still walk for a mile or even two but uphills i definitely struggle.

                                However, i would say my worst limbs are my arms. Again in the 2 years my grip hasnt changed. I use a stress ball and squeeze that each day and i can still squeeze that using either hand fine 50 times, no problem.I have never dropped anything, can pick up full kettles etc. However, when i do pick something up it sends a shock down my forearm and into my elbow.
                                My shoulders and bicep muscles, especially right arm are my worst muscles. I can see my right bicep circumference is 1.5cm thinner than my left. Which is quite alot on a small muscle area. Muscle around both elbows has totally atrophied. I can still use my right arm, it moves at 100% speed but lifting anything with weight sends shocks down my arm as my biceps and shoulder struggles. My right shoulder and bicep aches most of the day. I get pains in the shoulder and elbow area when i bend my elbow. Pain is a big thing with this right arm. It hurts to use it.

                                But i just dont know if this is slow progression or not. I have pics of my arms from 18 months ago and the elbows were atrophied even back then. I can see my shoulders anf biceps are definitrly thinner than 2 years ago. My neuro said if it was als i would be much worse and at least one if my limbs would be failing. But as i dont currently have any umn signs mine is more likely to be pma.

                                does my progression sound like your husbands with pma?
                                Last edited by Shepster34; 17 February 2021, 10:20.

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