@gailsullivanlive-com
-
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]
-
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]
-
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]
-
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]
-
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]
-
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]
-
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?
-
Gail Sullivan became a registered member 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]
[Read more]
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]
[Read more]