Recent content by Snowbird270

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    Canadian Connections

    Hi, also to correct my above note, it is also Radicava that I could not go on as I was over two years of on-set ALS.
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    Canadian Connections

    Hi Nikki, yes I did mean Radicava, the trail was still recruiting a 2-3 months ago, I was going to go in it, but I’m over the two year mark. May-be it is closed now? I will look into other trails. Thanks for spotting my error!
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    Canadian Connections

    Hi pirate wife, I’m from BC too. I found out, we can be in trials in Seattle, USA. I believe they have 2 trials at present, one is oral riluzole. You may want to look into it. I found out you have to go on Riluzole within two years of having ALS or it is not covered under bc medical. Perhaps if...
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    Canadian Connections

    Hi Pirates Wife, I too am in BC, I advice you to ask question on this forum about treatments options and once you have decide, be firm with your neurologist at the clinic. I allowed myself to be talked out of taking any meds. Now I’m too late for one, and found out the other is most effective...
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    Voice banking

    Hi, I’ve heard people write on here about voice banking. What is it, and how do I start doing this? Thanks in advance.
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    Do you stop dreaming

    Interesting I’ve come across this topic, I’ve been dreaming a lot lately. I too like firefighter 58, dream of work and many interesting situations. I also dream of walking and then relize in my dream I can’t walk, but I continue to walk, and love the way I feel, so free again. I must keep having...
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    Newly Diagnosed

    Thanks Laurie, I am looking into a 3 opinion. Im thinking of going to the Mayo Clinic, Minisota. Any suggestions?
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    Newly Diagnosed

    Hi, it’s been a hard 1 1/2 years. I was originally dx. With ALS Limb onset Feb 2020. I had right foot drop for about six months. NCS and EMG abnormal. All blood work and MRI’s done prior dx. (Slowed no cause of foot drop). I than found a neurosurgeon, whom did lumbar surgery on me six month...
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    EMG

    Has anyone with limb onset (at the earlier stage) experience joint pain. I can barely walk due to hip pain and hip weakness. thanks!
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    EMG

    Hi, thanks for your response. I find this whole dignosis overwhelming! How long does it take to come to terms with it? Also are you taking any medications to slow down the disease? Thanks!
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    EMG

    I completed: I was diagnosed after the third NCS and EMG with “probable ALS” I had a second opinion which agreed I had ALS. I was re-assessed a year later. My EMG to upper arms showed no change and NCS to all limbs had not changed. All my reflexes are brisk, 3+. So normally they do not reassess...
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    EMG

    Yes I was dignosised with ALS.
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    EMG

    Hi, I had a abnormal NCS and EMG. A year later the same test abnormal with no Changes. Same score. Has anyone come across this? I have had some progressive foot drop and progressive hip strength. Thanks.
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