Muscular Dystrophy News Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search

Gail Sullivan

Home Members Gail Sullivan
show less show more
Profile picture of Gail Sullivan

@gailsullivanlive-com

  • Activity
  • Profile
  • Friends 0
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Gail Sullivan

    Gail Sullivan replied to the topic Medical Gaslighting in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 months, 3 weeks ago

    I’m sorry you had to go through it for that long Carl. I thought my time is long but you beat me by at least 20 years. It’s totally frustrating when they won’t listen to you and disagree with the diagnosis that’s been done through DNA. I no longer have a neurologist so I’m pretty much on my own with this with help from my GP who admits she doesn…[Read more]

  • Profile picture of Gail Sullivan

    Gail Sullivan replied to the topic Medical Gaslighting in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 7 months, 3 weeks ago

    I can totally identify with the problem that you had with that neurologist. When I started my journey to find out what was wrong with me I was given five different diagnoses and each the role of just asked what my first symptom was and when I told them it was that I had the inability to stand on my toes I was told over and over but that was not a…[Read more]

  • Profile picture of Gail Sullivan

    Gail Sullivan replied to the topic Recovery from Muscle Pain in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 7 months, 4 weeks ago

    My MD has progressed so far that I am bedridden right now. I haven’t been able to walk in at least 10 years. I also cannot set up at the side of the bed nor can I turn on my own so exercises are out for me. One thing my neurologist has had me on is creatinine which does help with the cramping. I purchase it online and take it bid. It doesn’t get…[Read more]

  • Profile picture of Gail Sullivan

    Gail Sullivan posted a new activity comment 8 months ago

    Thank you very much for the welcome Leah. I hope I’ll be able to learn something from being in this group and then I’ll be able to pass on information I might have. At the very least it’s a page where I can tell someone my frustrations rather than keeping them to myself or burdening my children children with more MD problems. I’ve been bl…[Read more]

    View Conversation
  • Profile picture of Gail Sullivan

    Gail Sullivan posted a new activity comment 8 months ago

    Thank you for your welcome. I have a rare form of MD It’s called Miyoshi myopathy, General diagnosis at the age of 22 and it took me 35 to 40 years to find out exactly what type I did have. I’ve had so many biopsies and EMGs that I’ve lost count. I’ve worked as a nursing instructor at University until the 90s and then slowly became bedridd…[Read more]

    View Conversation
  • Profile picture of Gail Sullivan

    Gail Sullivan replied to the topic Cost of Living with MD in the forum Mobility Aids and Medical Equipment 8 months ago

    for me it’s getting me out of the house to somewhere else like the dentist. I have to hire an ambulance taxi. My dentist is 15 miles away from my house and last Thursday it cost me over $800 to go to the dentist and back home. I can’t afford to spend this kind of money to go to the hospital for test or to the dentist. However there’s no other…[Read more]

  • Profile picture of Gail Sullivan

    Gail Sullivan replied to the topic National Registry for Muscular Dystrophy in the forum Clinical Trials 8 months, 3 weeks ago

    Is there a national registry for Miyoshi Miopathy?

     

  • Profile picture of Gail Sullivan

    Gail Sullivan became a registered member 1 year, 8 months ago

    • Profile picture of Danielle "Dani" Liptak
      Danielle "Dani" Liptak replied 1 year, 8 months ago

      Welcome, Gail! My name is Dani Liptak, I am a moderator, along with Leah, for the MD forums! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at the age of 12. Please feel free to respond to any of the open discussions that we currently have in progress! Also, let me know if there is a topic that you would like to discuss or…[Read more]

      • Profile picture of Gail Sullivan
        Gail Sullivan replied 8 months ago
        Thank you for your welcome. I have a rare form of MD It’s called Miyoshi myopathy, General diagnosis at the age of 22 and it took me 35 to 40 years to find out exactly what type I did have. I’ve had so many biopsies and EMGs that I’ve lost count. I’ve worked as a nursing instructor at University until the 90s and then slowly became bedridd…

        [Read more]

    • Profile picture of Leah Leilani
      Leah Leilani replied 1 year, 8 months ago
      Hi there Gail. My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.

      Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and judgment free…

      [Read more]

      • Profile picture of Gail Sullivan
        Gail Sullivan replied 8 months ago
        Thank you very much for the welcome Leah. I hope I’ll be able to learn something from being in this group and then I’ll be able to pass on information I might have. At the very least it’s a page where I can tell someone my frustrations rather than keeping them to myself or burdening my children children with more MD problems. I’ve been bl…

        [Read more]

Profile Photo Jason kent

Login

Register

Search forums

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

Who’s Online

There are no users currently online

Newest Topics

  • Saying Farewell to the Forum by Leah Leilani
  • Rare Disease Day 2023 by Danielle “Dani” Liptak
  • Why Does Rare Disease Awareness Matter to You by Leah Leilani
  • Disability/ADA Lawyers by Danielle “Dani” Liptak
  • Creating a Culture of Broader Inclusion in Fashion and Beauty by Leah Leilani

Recent Replies

  • Arm Numbness
  • Arm Numbness
  • Arm Numbness
  • Traditional Family Values and Disability
  • Caregiver Appreciation

Members

Newest | Active | Popular
  • Profile picture of Emily Carfagna (wife)
    Emily Carfagna (wife)
    Active 1 day, 12 hours ago
  • Profile picture of Ron Forth
    Ron Forth
    Active 1 day, 12 hours ago
  • Profile picture of Kimberly Reynolds
    Kimberly Reynolds
    Active 1 day, 13 hours ago
  • Profile picture of Patty
    Patty
    Active 1 day, 14 hours ago
  • Profile picture of Joannie Fortier
    Joannie Fortier
    Active 2 days, 11 hours ago

Forums

  • Coronavirus (COVID-19) and MD
  • Muscular Dystrophy Awareness
  • 30 Days of MD
  • Adults​ ​With​ ​Muscular Dystrophy
  • Clinical Trials
  • Member Spotlight
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • Muscular Dystrophy Events And Activities
  • Mental Health and Positivity
  • Mobility Aids and Medical Equipment
  • Muscular Dystrophy ​and​ ​Dating/Relationships
  • Muscular Dystrophy Parents and Caregivers
  • Muscular Dystrophy Tips, Tricks and Advice
  • Using our forums
  • Young Adults with ​Muscular Dystrophy
  • Most popular topics
  • Topics with no replies

Muscular Dystrophy News 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

Disclaimer:

Muscular Dystrophy News 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 © 2017-2023 All rights reserved.

©2023 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?

Forgot your details?

I remember my details

Create Account