Recent content by Hal

  1. H

    ALS

    Question… there has been an increase in the amount of diseases that now have vaccines associated with them... given vaccines work by releasing antigens into your system has any study been done on the overall effect vaccines might have on the immune system? It seems that a lot of ALS research/...
  2. H

    ALS

    Given I have a significant history of autoimmune disease in my family, I have often asked top Drs if there’s a connection…the answer is typically they don’t think so but they also don’t know enough about the ALS to fully rule it out. Everyone's immune system is unique so it’s hard not to say...
  3. H

    Healey trial

    i applied for a trial a few years ago understanding there was a 2 year onset cutoff but I felt ok about that as I was just 21 months in to initial symptom. 3 months later they told me I was past the cutoff… not something I was very happy about.
  4. H

    ALS

    Hi Nikki….question…have you heard of any ALS ties to Shingles vaccines? Asking because there is definitely a concern regarding GBS and the Shingles Vaccine and personally my symptoms started soon after getting my shot. Thanks
  5. H

    Feeling quite Confused

    Thanks for all the feedback…Nikki, you are a true resource but more importantly a truly good person. i think my overall point of view is simply very little advancement has been made in the world without curiosity and sincere questioning of the status quo. In talking to Drs that are considered...
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    Feeling quite Confused

    Thanks Nikki…I’ll look at the Healey webinar. I’m not trying to be difficult…just saying that with all the variables associated with ALS and with the rather limited size of the trials that are conducted one could make a statistical argument that from a data point of view all the trials can be...
  7. H

    Feeling quite Confused

    Buglaw, thanks for the reply. Identifying those with a slower progression is pretty straightforward. I’m simply suggesting it might be beneficial to approach trials without blocking those that have had the disease for a bit of time. Perhaps a dual approach… or perhaps having a secondary control...
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    Feeling quite Confused

    Thanks as always Nikki for your thoughtful and intelligent response. The simple fact that you have not qualified for trials speaks to my concern on why it is either time for a change or time for a parallel approach. Again…many thanks .
  9. H

    Feeling quite Confused

    I’ll be honest… I’m writing this post to reach out for clarity and hope. Having now bee on this journey for @ 4 years I’m at the stage where I’m beginning to wonder about the research process for ALS. The more I learn about the disease and the more I understand the trial protocols, the more I...
  10. H

    Co-morbidities - how common?

    I’ve often been curious of both my family history and conditions I had prior to my diagnosis. My mother passed after year’s suffering from Lupus and my sister has been living with MS for 45 years. Additionally, I have spinal issues from sports injuries that happened many years ago and currently...
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    Sept 29 FDA and Nurown

    Hi Nikki, Thanks as always for your insight. Completely agree and understand the need for increased bio markers as well as the possibility to truly measure certain protein levels and other elements in patients. I was on Riluzole for 4 weeks but had to go off of it when I had all the symptoms of...
  12. H

    Sept 29 FDA and Nurown

    If ALS affects everyone differently, is it not fair to question the validity of virtually every trial? And if the majority of trials focus on recruiting those just a few years in with fast progression, is it not fair to question whether the cause for the disease is different for those PALS vs...
  13. H

    ALS EXPERTS

    I’ve been “fortunate“ in being able to be seen both at MGH in Boston and Mayo in Jacksonville. the teams at both hospitals have been great … more than anything, I’ve very much appreciated the willingness to engage my endless questions and curiosity about the disease.
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    Relyvrio update

    Might have been one more person on it but my copayment was scheduled to be @6k a month
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    In person study at MGH

    I participated in the same / similar study early last year at MGH… the folks running the study were great!
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