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  • Users: janicebuf
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  1. J

    Need you opinion, I'm scared

    Hi All, I've read the 'Could this be ALS' info and don't see my answer. I've lost many, many, family members to ALS. I noticed my right eye was drooping a few weeks after Botox so just assumed it was because of that. My family noticed it in photos and I told them the same thing. Then my...
  2. J

    Need advice SOD1

    Hi Everyone, I have not been on this forum for many years when my brother was diagnosed. [He passed at age 50]. I have been living with the fear of ALS since childhood, and am now about to turn 60. I've lost more family members than I can count, including a cousin at age 21, so you can...
  3. J

    Humor And Hope

    Hi Everyone, My name is Janice and this may come as a shock to some of you but here goes: I am a 45 year old married mom of two great kids. I have had a lot of tragedy in my family; my sister died at age 41 of breast cancer, I have lost 25 family members to ALS, including my dad at 57. My...
  4. J

    Bed, Trach, Suction, boredom. etc...

    Hi All! So, so glad that you are all here. I know I don't post alot but you have all been wonderful...Some may remember, my brother age 46 was diagnosed several months ago with Familial ALS. Long story very, very short (could be very, very, long), his weight dropped from 155 to 107lbs in 2...
  5. J

    Disease slowing down?

    Hi Guys, I know you're not Dr.'s but have a question....my brother had constant muscle twitches for several months. He has ALS which started in the Bulbar region (age 46). Anyway, I emailed him today as he is finally getting his tube put in tomorrow (thanks to you who answered my emails which...
  6. J

    feeding tube question

    hi everyone, my brother was diagnosed with bulbar als about 5 months ago though his symptoms started in april (familial form). anyway, he is 46 and determined to continue to stay positive and fight it, which is wonderful. he is very active every day ar work however, he refuses to think about...
  7. J

    update

    hi everyone, i don't know if you remember me but my brother was the one who had the 'bulbar' sympotoms a few months ago. i wrote about him and you all were so helpful. we just found out for sure he does have als. he is 46 years old and i don't know what to say to him! i am so disgusted with...
  8. J

    bulbar symptoms update

    Hi Everyone, I don't know if you remember but I am the one who has the brother that was experiencing bulbar symptoms. Since then, the neuro has said 'possible' als due to our family history. I don't know if anyone can help but he was over last night and to me, it looked like he was at the...
  9. J

    BULBAR SYMPTOMS

    Hi again everyone! I don't know if you all remember me writing but I talked about my brother who has been exhibiting Bulbar symptoms....We went to the neuro and he did an EMG~it wasn't 'clean' as he noticed something in both of his arms (nerve damage? i am not sure) he repeatedly asked him...
  10. J

    bulbar symptoms update

    hi again everyone. if you look at my last post on bulbar symptoms and then read this post maybe you will have some thoughts.... in speaking with my brother tonight, who has some bulbar als symptoms, he was telling me that for about 6 months he's had a tingling or burning sensation in his left...
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