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  1. Blondrea

    Newly Diagnosed (Bulbar Onset)

    So sorry you are going through this. You sound like a lovely person. If I lived closer, I'd come hang out with you.
  2. Blondrea

    Unapproved ALS Drug

    Thank you, mich5! If it wasn't for you, we would not know about this drug. Thanks for your generosity! Andrea
  3. Blondrea

    Unapproved ALS Drug

    Sorry, meant Mich5! (Not Mitch.)
  4. Blondrea

    Unapproved ALS Drug

    Hi, Mitch. Did you need to get your neurologist's permission to get this drug? (I see this on their website: It will first be necessary for you to find out if your doctor is willing to try to obtain permission from the drug Regulatory Authority in the country where you live to treat you on...
  5. Blondrea

    Unapproved ALS Drug

    Thank you for sharing. Very helpful!
  6. Blondrea

    Concerned twitcher

    Hello. The neurologist didn't find clinical weakness. Later, an ALS expert did (at UCLA). He had twitches for two years before he had weakness in one finger on one hand.
  7. Blondrea

    Concerned twitcher

    Mod clarification: Blondrea's boyfriend was reported to have had fasciculations for two years, was noted as having hand weakness at a doctor's visit, and was unable to turn a key less than a week later. So to add to her post below, he had both weakness and twitching when ALS was first...
  8. Blondrea

    After ALS...

    When my partner was diagnosed, I went to a psychiatrist for the first time. He said something I found reassuring. He told me that I wasn't suffering from post traumatic stress disorder, because there was nothing "post" about it. I was smack dab in the middle of the trauma. And that made me feel...
  9. Blondrea

    newly diagnosed

    So, so sorry. I understand your pain. My boyfriend of ten years was officially diagnosed last Tuesday. "Sweet dreams and flying machines in pieces on the ground." The folks on this forum know how you feel. You will find friendship and understanding here. Andrea
  10. Blondrea

    "I have been diagnosed..."

    So sorry. You have friends here.