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    2nd opinion

    Well, today I had another EMG and saw a different neurologist at the ALS clinic (my neurologist called it 1/2 of a 2nd opinion ). Good news is, my EMG was okay. He said a little worse from previous EMG? Don’t know what that was supposed to mean?
    But he confirmed the PLS diagnosis. He said “odds are that within first 5 years it may likely shift to ALS, but good news is that it is slow progressing.” He also said to watch for sudden weight loss, and that my neurologist will follow me at the ALS clinic.
    Slow progression sounds good to me 👍😅

    My husband booked tickets for he and I to go to Paris in July! 🇫🇷 My parents and mother in law will watch my daughter while we’re gone. He said he was going to surprise me for our 10th wedding anniversary, but he thought it would be better to go sooner rather than later…yolo!

    #2
    Angie what wonderful news. A trip to Paris as well. Lovely to have something to look forward to.

    I'd be thinking - what to pack!

    😘
    when i can think of something profound i will update this.

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      #3
      How lovely. Enjoy every minute of it. X
      Diagnosed May 2021 bulbar onset als.

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        #4
        That’s great news 😀😀😀
        Foxes Never Quit 💙

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          #5
          Pleased for you AngieCanuck

          You will love Paris. I lived there for two and a half years.
          Diagnosed 3rd November 2021 Bulbar Onset

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            #6
            AngieCanuck Yep, I'm in the YOLO camp too - we're spoilt this side of the pond in having Paris so close, it's a unique city 👍👍

            And Les Parisiens flee their city in droves for July & August, so it tends not to be so busy.

            Good news about your symptoms still presenting as pure UMN xx
            ​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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              #7
              AngieCanuck - glad the symptoms are still progressing slowly. Interesting the line between PLS and ALS. I apparently have suspected UMN dominant ALS, so there must be something that has tipped me over that line.

              A trip to Paris sounds great - I've never been. Always good to have something to look forward to xx
              Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

              Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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                #8
                Originally posted by TinyLady View Post
                ... there must be something that has tipped me over that line.
                An abnormal EMG result, most likely...
                ​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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                  #9
                  Ellie - ahhh maybe. All I know is I'm atypical and although it is MND, they are not quite ready to put confirmed ALS variant stamp on me. I'm too unusual for some reason 😆 - yet somehow I feel I fit in here perfectly... 😉
                  Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                  Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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                    #10
                    AngieCanuck am really pleased for that the emg didn't show als. So relieved for u because I know u were anxious about the tests and any possible changes. I was worried twitching was always a sign of lower motor neuron involved so must be that twitching can occur with pls but is different? I am the same in that mine is currently only upper motor neuron involved. But my last emg was back in November so don't know when they plan another one. Not sure I want to know.
                    never been to Paris before. Looks incredible. Not too long a flight if u r east coast Canada? Really happy for u xx
                    Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                      #11
                      Hi everyone,

                      I am so pleased that things continue to be confined to UMN. I feel so fortunate and am trying to make the most of things.
                      I’ve travelled a lot in my life; working and living in Kenya and Egypt and backpacking a lot of Asia and Africa and South America. I never really explored Europe, except in the UK and Iceland, so visiting France is a bucket list dream. I’m a bit worried about my stamina and mobility for Paris, but my husband assured me that we’ll take things slowly and he can push me around in a wheel chair.
                      I’m actually living in Ontario, between Toronto and Niagara Falls. So, it will be a long flight…and worried about that given all of my difficulties, but I’ve decided to just take the plunge.

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                        #12
                        Zante I’m not sure about the twitching…? I do have constant twitching, and it is visible, but not as severe as if LMN and UMN were involved? My twitching is definitely becoming worse as time passes, but it only lasts for a couple seconds in one spot and then moves to a completely different location for a couple of seconds and then moves again. The 2nd opinion neurologist told me that PLS and ALS are the same disease just on a spectrum, and many PLS people shift down the spectrum to ALS within the first 5 years of diagnosis and some even after 5 years. 🤔🤷‍♀️

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                          #13
                          I went to Niagara and Toronto a few years ago and loved it. As a treat we went business class and the bed /seat is really on another level. U can stretch out and are not so cramped. Mind u.... been skint ever since! Am sure u will love Paris and being away. U r very well travelled!
                          the twitching sounds exactly like I would describe mine only lasts for a few seconds and moves about to different areas. I had to study my legs and hold phone ready for ages to capture the twitching when asked to film it. I then really noticed the tremor in hand arm area because on the video the phone is moving everywhere. Dont know if a tremor is normal for pls?
                          Angie I hope u continue to have umn only and can make the most of everyday getting out and about if that's what u want that day. Take care.
                          Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                            #14
                            AngieCanuck In most of Europe, a 'diagnosis' of PLS is not usually given until ~4yrs of absent LMN involvement - the duration in diagnostic criteria is 3-5yrs - I know that North America gives a PLS diagnosis much earlier.

                            One region isn't doing it 'right', nor is the other doing it 'wrong', it's just different.

                            And, another school of thought is... Does PLS actually even exist? 😏

                            Btw, any joy on Botox? xx
                            ​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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                              #15
                              AngieCanuck Wow, Paris! I hope you have a wonderful trip and make lots of great memories.

                              Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

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