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  1. azmully

    recently diagnosed C9

    Thanks Nikki! It's been a good week I was just fitted with leg braces so I can walk much better and was able to take my Brittany out today for a short jaunt. I think my progression is slow since my initial symptoms were 8-9 months before my first failure ( foot / leg ) in June and my diagnosis...
  2. azmully

    recently diagnosed C9

    Thanks Kim, and yes Nikki has been a really great resource for my past questions.
  3. azmully

    recently diagnosed C9

    Hi everyone, I was here on the forum for questions about my larger family's history with ALS (c9) and my own personal situation back in June/July of this year. I shared my EMG on this forum back then and was waiting to be seen by the Barrow Neurologist here in Phoenix, AZ. In August I was...
  4. azmully

    fals, c9 gene identified, big family, concerns on risk

    I ordered my EMG on my own. I had a delay with my new insurance on seeing the Barrows Neurologist who saw (dx) both of my Uncles, so I went ahead with no guidance and got this EMG done. I plan on seeing Dr. Ladha. I hope soon once it's scheduled...
  5. azmully

    fals, c9 gene identified, big family, concerns on risk

    Thank you. Not sure and my head is really spinning with this. I had thought my initial symptoms of "waking my tight legs" every AM for 6 + months didn't align, but in June when I lost the ability to stand on heels I was concerned. For much of June I was still working out until the shut down and...
  6. azmully

    fals, c9 gene identified, big family, concerns on risk

    Yes here are the other docs, no I'm due soon for a neurologist exam, this EMG was my only evaluation for my current issues at the moment. Thank you Nikki for your time on this.
  7. azmully

    fals, c9 gene identified, big family, concerns on risk

    I just received my EMG, and I have not yet talked to my doctor as of yet. This does not look positive from what I see in the interpretation and impression summaries. Would appreciate guidance on this.
  8. azmully

    fals, c9 gene identified, big family, concerns on risk

    I asked about the results and he apologized and said he could not confirm anything and only suggested I get a MRI for my visit with the ALS doctor. I wish I would asked where or what for, but I was a bit thrown off by not his being able to share at that time. I'll get the results soon enough so...
  9. azmully

    fals, c9 gene identified, big family, concerns on risk

    To ease my mind I did get a EMG last Friday since my left leg still can't do a calf raise and I'm still unable to stand back on heels. Tippy toes are good but after a walk at times the left foot seems weaker then recovers for the tippy toe test. My overall strength is good when he tested my...
  10. azmully

    fals, c9 gene identified, big family, concerns on risk

    Thanks again Nikki this starter study is very helpful. I'll see what I can do to kick this off!
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