boston

  1. P

    One week since diagnosis...

    My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation. The first few days were spent crying/ holding her. She now...
  2. T

    Just found out - please help.

    My husband is in his late 40s. We were told yesterday by our regional ALS specialist that he has ALS. I am in shock and devastated. They started him on drugs already and we are getting him a second option in Boston soon. Hopefully next week. I need help putting the next few weeks together. We...
  3. W

    Update from recent neurologist visit

    Hello again, to all the wonderful helpers here. Had another EMG yesterday and my fine Dr doesn't think my weakness is caused by ALS. She thinks I have a progressive muscle disease. Again she is recommending I go to Boston's Brigham and Women's hospital and see Dr Amato. He is a respected...
  4. A

    My mother’s diagnosis

    Hello to all, As I’m sure everyone here can understand, I never thought I would need to post on this forum. My only knowledge of ALS was through the ice bucket challenge! My 70 year old mother was diagnosed with ALS at the beginning of August this year. I first noticed something wasn’t quite...
  5. Nikki J

    Boston Marathon

    ALSONE is a designated charity for 2019. This means they have a certain number of entries for their team that do not need to be BAA qualified. If any CALS or friends are interested in running and fundraising contact ALSONE I always wanted to run Boston!
  6. W

    Wyoste update neurologist visit

    Saw neurologist today. A couple of days earlier because she had a cancellation. She recommended I go to Brigham and Women's in Boston to a muscle specialist. She said he was best in world lol. I suggested she do another EMG before I go to Boston. She agreed to that idea. I'll have to wait until...
  7. Kristina1

    Boston area PALS..

    Is anyone else going to the ALS ONE conference? Link: https://alsonecareconference.org/?utm_source=ALS+ONE+Community+Care+Conf.&utm_campaign=Tickets+push+1&utm_medium=email My husband and I are planning to go.
  8. David

    ALSA PSA Appearance and Awareness Opportunity

    On behalf of the The ALS Association and Vitamin Enriched, a real people casting company in NYC, we reach out to PALS and CALS for participation in a public service campaign. We are looking for people who are living with mid to advanced stage Amyotrophic Lateral Sclerosis (ALS), and their...
  9. O

    Genetic Testing

    I've asked this question before but want to see if anyone has new information. When I was going through the diagnostic process, the neuro I was seeing suggested genetic testing through the Athena Lab in the Boston area. (Think this lab has a new name now) The cost was about $35,000, so it was...
  10. lgelb

    ALS survey

    I'm no longer eligible, so don't know how good a study it is, but in case you're not on the mailing list: This initiative, titled IMPACT-ALS (Investigating and Measuring Patient And Caregiver Trends about ALS), is a collaboration with three industry partners (Biogen, Ionis, and Cytokinetics)...
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