ALS News Today Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search
  • What can we help you find today?

Stephanie

Home Members Stephanie
show less show more
Profile picture of Stephanie

@sjmarcum4

  • Activity
  • Profile
  • Friends 1
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Profile picture of Stephanie

    Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 8 months ago

    Lisa – from reading your challenges I realize there may be significant differences between the way we obtain care in the U.S. and Canada.  I return to my recommendation that you contact the Mayo Clinic in Rochester, MN or an ALS certified center to obtain a consultation and understand the cost to do so.  Advocate for your care and make informed m…[Read more]

  • Profile picture of Stephanie

    Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 8 months ago

    Lisa.  My dad definitely has extensive wasting in his hands and weakness as described with split hand sign.  I tracked the hand wasting and weakness as one of the symptoms he was having out of diligence when we were trying to find out what was wrong with him.  None of the neuros we saw mentioned split hand sign but they did consider his hand wa…[Read more]

  • Profile picture of Stephanie

    Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 8 months ago

    Hey Lisa.  I know for certain that Mayo is open to people from every country.  They have an excellent team who probably can answer insurance questions for you in advance as they regularly care for non-US patients.  Another step you might take that I see others recommended is to make an appointment with an ALS Association Certified Treatment Ce…[Read more]

  • Profile picture of Stephanie

    Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 8 months ago

    Hi Lisa.  I’m sorry to hear about your health and your frustration.  I’m not an expert.  My 76-yr-old father was diagnosed in June with late-stage ALS.  It took us 3 years to get a diagnosis.  We spent so much time and have had a significant amount of anxiety about the root problem that resulted in his symptoms and caused us to see neur…[Read more]

  • Profile picture of Stephanie

    Stephanie replied to the topic Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 11 months ago

    We saw a number of doctors at Mayo Clinic.  Dr. Eric Sorenson is the neurologist we saw who diagnosed ALS (https://www.mayoclinic.org/biographies/sorenson-eric-j-m-d/bio-20054094).  Applying was much simpler and less intimidating than I expected.  I sent in an online request for appointment (https://www.mayoclinic.org/appointments).  They fol…[Read more]

  • Profile picture of Stephanie

    Stephanie replied to the topic Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 11 months ago

    Hi Michael.  I’ve been working with my dad to get a diagnosis for what we understand is respiratory onset ALS, which we received at the Mayo Clinic in Rochester MN in July this year.  The EMG at Mayo didn’t reveal anything related to ALS but I understand from the neurologist that this isn’t unusual as there are very specific things that have to b…[Read more]

  • Profile picture of Danielle Uskovic

    Danielle Uskovic and Profile picture of StephanieStephanie are now friends 2 years ago

  • Profile picture of Stephanie

    Stephanie changed their profile picture 2 years ago

  • Profile picture of Stephanie

    Stephanie replied to the topic Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years ago

    My father was diagnosed at the Mayo Clinic with late-stage, respiratory onset ALS three weeks ago (July 2020).  We’ve been searching for answers, seeing many doctors, and having numerous diagnostic appointments for 3 years trying to understand the cause of his rapidly declining health (breathing problems, significant weight loss, weakness in his…[Read more]

  • Profile picture of Stephanie

    Stephanie posted a new activity comment 2 years ago

    Hi Amanda. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m reposting what I sent Dagmar as I’m not sure if you’ill see my reply to her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his…[Read more]

    View Conversation
  • Profile picture of Stephanie

    Stephanie posted a new activity comment 2 years ago

    Hi Dagmar. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m not sure if Amanda will see this so I’ll also post it for her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his rapid…[Read more]

    View Conversation
    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years ago

      Hi Stephanie, here is the link to the discussion of “Respiratory Onset.”

      – (@) August 4, 2020

  • Profile picture of Stephanie

    Stephanie became a registered member 2 years ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years ago

      Hello Stephanie,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]

      • Profile picture of Stephanie
        Stephanie replied 2 years ago

        Hi Dagmar. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m not sure if Amanda will see this so I’ll also post it for her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his rapid…[Read more]

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 2 years ago

          Hi Stephanie, here is the link to the discussion of “Respiratory Onset.”

          – (@) August 4, 2020

    • Profile picture of Amanda
      Amanda replied 2 years ago

      Hello Stephanie, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]

      • Profile picture of Stephanie
        Stephanie replied 2 years ago

        Hi Amanda. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m reposting what I sent Dagmar as I’m not sure if you’ill see my reply to her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his…[Read more]

Profile Photo Della Davis Profile Photo Denise Burstein

Register

Search forums

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages
Search in posts
Search in pages

Who’s Online

There are no users currently online

Recent Replies

  • EXCESS MUCUS
  • What is Your Self-Care Plan?
  • EXCESS MUCUS
  • EXCESS MUCUS
  • EXCESS MUCUS

Members

Newest | Active | Popular
  • Profile picture of Patricia
    Patricia
    Active 1 hour, 20 minutes ago
  • Profile picture of Dagmar Munn
    Dagmar Munn
    Active 2 hours, 10 minutes ago
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 3 hours, 1 minute ago
  • Profile picture of Bill
    Bill
    Active 3 hours, 11 minutes ago
  • Profile picture of Jeff
    Jeff
    Active 3 hours, 21 minutes ago

Forums

  • Coronavirus (COVID-19) and ALS
  • In Loving Memory
  • Living With ALS
  • ALS Awareness Month
  • Flash Briefings
  • A​ ​Forum​ ​for​ ​ALS ​Caregivers​
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • Mobility Aides, Assistive Technology and Medical Equipment
  • ALS ​and​ ​Relationships
  • Research Topics
  • ALS Awareness and Advocacy
  • ALS News
  • ALS In The Media
  • Using our Forums
  • Most popular topics
  • Topics with no replies

ALS News Today Forums

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy

Recent Posts

  • ALS Patients Have Higher Lead Levels in Blood, Review Study Finds
  • My Motivational ‘Bumper Stickers’ Help Me Live Well With ALS
  • Radicava Seen in Real-world Study to Prolong Survival With ALS

ALS News Today Forums is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

BioNews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2017-2022 All rights reserved.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or     Create an account

Lost your password?
Verify you are not a robot

Forgot your details?

I remember my details

Create Account

Verify you are not a robot