Well, I went for my 3rd EMG today and my neurologist has said I have Upper motor Neuron dominant ALS 😟… LMN degeneration starting and some muscle wasting and more clinical weakness. I guess I kind of was expecting it because I could feel the changes and progression but it is still a shock. He is apparently starting me on “ALS meds”, which I’m assuming is Riluzole?
-
-
Sorry it’s confirmed Angie, even though you sort of expected it. I would presume riluzole XxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning! -
Maybe amx0035 too it is approved in Canada and I read people are now receiving it. I am sorry for the diagnosis change. Difficult no matter how much expectedComment
-
Sorry to hear this Angie.
And edaravone (Radicava) is available under public formularies, last I heard AMX0035 (ALBRIOZA) was under negeotiation, which may have changed by now - if you can get, ALBRIOZA, grab it!Originally posted by AngieCanuck View Post
We feel your pain Angie. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
Comment
-
Hi angie
Horrible news. All I can do is offer a hug.
😔😘🤗😘when i can think of something profound i will update this.Comment
-
Hi Angie even though you were expecting it, its a bitter blow.
Hoping you can choose a med that you can start quickly xxxDiagnosed May 2021 bulbar onset als.Comment
-
AngieCanuck I’m so sorry to hear your news, but you’ve at least got a diagnosis.
Hugs and positive vibes being sent your way that you get the medications quickly and that they help slow progression. 💕💕💕Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.Comment
-
AngieCanuck Angie am so sorry to see this. I really feel for you so much. Even though it might have been expected its incredibly difficult to hear it out loud. I hope you can do something this weekend to stop the thoughts going around and around. thinking of you, xxxDiagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.Comment
-
Sorry to hear the update AngieCanuck, even when you are expecting the news it's still a shock and each new thing is difficult. I hope they can get you started on the medication and progression is as slow as possible xComment
-
So sorry AngieCanuck. As others have said even when you're expecting bad news it's still an awful shock.
Big hugs to you xx🤗😘Comment
-
AngieCanuck so sorry to hear this news. I have another EMG booked next week and expect similar news. At the moment my diagnosis is mainly clinical as I have widespread weakness, some wasting and crazy reflexes. But no spasticity.
Sending hugs xxDiagnosis 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!Comment
-
sorry to hear this unwelcome news.Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
-
AngieCanuck sorry to hear your news. Hope you’ve got support at home. It will take some time to accept this I just wish you all the best wishes and sending love to you.xxComment
-
Thanks everyone❤️ I spent the weekend on the couch, watching Netflix. Feeling better today, with a sense of determination. Lots of things I want to do 👍. I feel like I’ve got to make the most of things.Comment
-
Comment