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    Confusion and hope?

    Hi everyone!
    I had another appointment at the ALS clinic yesterday that was very unusual. My neurologist had another neurologist to review my case, and I met with him. He said that there was a possibility that I didn’t have PLS…!?! He said that I need an angiogram of my brain/spinal cord to rule out dural arteriovenous fistula? He said that he had a patient who had a normal mri with contrast, but ended up having an angiogram that revealed the fistula. He was a little unusual, and said PLS is rarely unilateral (which contradicted what I had heard, but I’m no doctor??). My neurologist then appeared, and did the usual checks for clinical weakness. He seemed to be very annoyed with the other neurologist, and they argued a bit, in front of my husband and I. My neurologist then said the angiogram was a “Hail Mary” and he felt was very unlikely, which seemed to annoy the other doctor. It was very strange!
    They agreed that my left side is weaker (a 4?) and they both saw fasciculations. My neurologist then said he would like me to have a 3rd EMG in August.
    To say that I’m confused is putting it mildly. But today, I felt a lightness and such hope. If it’s the fistula, I could have brain surgery and the progression would stop. I’m putting all my eggs in that basket, but I feel like I’m riding an emotional roller coaster 🎢
    Angie

    #2
    AngieCanuck I’ll keep 🤞 fingers (and toes) crossed for you that you hear something good from the next round of tests.

    I’ve been on that rollercoaster several times in my life. All you can do is hang on until the ride is over. Hugs.
    Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

    Comment


      #3
      Oh Angie we await your news.

      Must have been weird having doctors exchanging words infront of you. Think they would have gone into the corridor and had their fight out there.

      Fingers and everything crossed.

      Love and hugs
      Denise xxxx
      when i can think of something profound i will update this.

      Comment


        #4
        AngieCanuck- that sounds pretty overwhelming for you to deal with. I think it is hard to know whether to get our hopes up. But then hope is such an amazing gift.

        I really hope you get the tests promptly and that the outcome is conclusive, would be amazing if it is not PLS. I expect I'm not alone in wondering if mine is something else, really rare, that has been missed xx
        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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          #5
          Angle what a weird and roller coaster appointment for you as you said. Sending 🤞🤞 and love xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            #6
            Its very overwhelming news. I had a similar experience at the beginning. Whilst waiting to see the mnd consultant, another neurologist told me it would be wrong to not tell me that he didn't think it was mnd. He did gene testing for 2 other rare disorders. I cried with relief. It was short lived when 3 weeks later I was told it was mnd.

            I know by me saying this on your post might seem very negative. Just my experience of the roller coaster of diagnosis.

            You cling onto that hope but I know you will remain realistic xx
            Diagnosed May 2021 bulbar onset als.

            Comment


              #7
              AngieCanuck Roller coaster ride for sure, Angie...

              Now that doubt has been cast, testing should be carried out asap in order to address your "confusion and hope" - have you a date for the angiogram?

              Is your own Neurologist not fully confident with the PLS diagnosis, which is why your case was reviewed? Or is he again trying to rule out ALS, hence the EMG in early August?

              Yes, you are correct in saying that PLS can certainly be asymmetrical, especially in the early stages.

              I can only hope that your confusion can be settled asap. xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                AngieCanuck I so hope for you that the initial neurologist is wrong and you don't have mnd. It must be playing on your mind all the time now. I echo with what Ellie also said about the need for the tests to be done as soon as possible. Can you go to a totally different neurologist for a second opinion? I would have hoped the repeat emg would have been done before August.
                I have had my pls tentatively changed to "highly indicative of als" due to the fasciculations witnessed by the mnd nurse and am going to have another emg sometime soon also. The mnd nurse asked if I wanted a second opinion anyway about the mnd and I said no because I didn't want them thinking I had no confidence in the consultant. But have changed my mind so need to somehow ask for one now.
                Angie i really hope so much that u can manage to be open minded and not get too over hopeful only because it would be devastating to wish for something so much and for it not to be. I have everything crossed. Take care xx

                Comment


                  #9
                  I don’t have a date for the angiogram yet. I’m assuming it will be a painfully slow wait, since our healthcare system moves as fast as asparagus grows. I have a feeling the EMG in August will happen before the angiogram.
                  I think my neurologist thinks ALS because of the increase in weakness and seeing fasciculations and figures the EMG will eventually show that. I’m trying not to get my hopes up, but playing pretend that it must be the dural avf thingy. It is nice to hope ☺️ 🤞🏻
                  Never did I imagine that I’d be praying for brain surgery 😂🤣🙌
                  We are leaving for Paris tomorrow (amidst the airport chaos at Pearson in Toronto and the strike at Paris airport). I’m exhausted just thinking about it! Is it weird that I kind of wish I could just stay at home?

                  Comment


                    #10
                    AngieCanuck Paris wow. have a fantastic break away Angie. I am sure the thoughts of staying home is probably more to do with the upheaval of the journeys and flights etc because its stressful enough at the best of times. But once you are there the dream trip is finally started! And I know what you mean about how hoping for something else even something so serious sounds crazy!! Long ago I was excited at the thought of progressive ms instead when read up on the similar symptoms... enjoy your hols xx

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                      #11
                      AngieCanuck Is your daughter going too or is it just the grown ups?

                      Once you're on board the aircraft, you can relax and enjoy.

                      Have a fab holiday/vacation. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        AngieCanuck you only wish the health care system moved like asparagus grows. You’d have your angiogram in 3 days. I would compare it to a sloth, around nap time. My “urgent” breathing test may happen in July, or not. Still, you’re in good hands at Mac.

                        I totally understand not wanting to deal with the airports, but your trip sounds wonderful otherwise. Safe travels and have fun!

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

                        Comment


                          #13
                          Sounds like your appointment would be enough to confuse anyone! I hope you get the tests as quickly as possible and get the best possible news (even if that involves brain surgery!). Hope the travel goes better than expected and you have a fab holiday.

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