Muscular Dystrophy News Forums | Gail Sullivan | Activity https://musculardystrophynews.com/forums/members/gailsullivanlive-com/activity/ Activity feed for Gail Sullivan. Fri, 24 Apr 2026 18:13:34 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 71d02b0ff426318463429daf5b78aee7 Gail Sullivan replied to the discussion Rare Disease Day 2023 in the forum Advocacy Work https://musculardystrophynews.com/forums/forums/topic/rare-disease-day-2023/#post-18354 Sat, 15 Jul 2023 03:17:39 -0500 Reply to Rare Disease Day 2023

I just received this today. So if rare disease day is in February, then I’ve missed it by months. i’m not sure why this came so late. But I am more than willing to share my story so if you could let me know if you still wanted then I’ll write it out.

 

]]> 5efead7012c9575b11f9053d27902b5a Gail Sullivan replied to the discussion Cost of Living with MD in the forum Mobility Aids and Medical Equipment https://musculardystrophynews.com/forums/forums/topic/cost-of-living-with-md/#post-18353 Tue, 11 Jul 2023 20:20:17 -0500 Reply to Cost of Living with MD

I thought I had replied to the question about but apparently I did not. I apologize for that. It is not covered by my insurance, even though I live in Canada and I have O’Hare which covers almost everything that Americans have to pay for. But there are some areas that are sadly lacking and this is one of them. It cost. almost my entire… Read more

]]> a262f7a605f9c408630b5f2fe90acc74 Gail Sullivan replied to the discussion Medical Gaslighting in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://musculardystrophynews.com/forums/forums/topic/medical-gaslighting/#post-18134 Wed, 31 Aug 2022 03:12:21 -0500 Reply to Medical Gaslighting

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… Read more

]]> 15f45988894c13193e4640bc2e268e3f Gail Sullivan replied to the discussion Medical Gaslighting in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://musculardystrophynews.com/forums/forums/topic/medical-gaslighting/#post-18105 Wed, 03 Aug 2022 18:29:23 -0500 Reply to Medical Gaslighting

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… Read more

]]> 6c831f3154b095f273383bb871f9d026 Gail Sullivan replied to the discussion Recovery from Muscle Pain in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://musculardystrophynews.com/forums/forums/topic/recovery-from-muscle-pain/#post-18098 Sat, 30 Jul 2022 18:47:25 -0500 Reply to Recovery from Muscle Pain

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… Read more

]]> b5419e5c4b363c44ac3288c584dd2a8c Gail Sullivan posted a new activity comment https://musculardystrophynews.com/forums/activity/p/7112/#acomment-8175 Mon, 25 Jul 2022 02:47:13 -0500 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… Read more

In reply to - Gail Sullivan became a registered member ]]> c6f8a5947c6040d0bbc02531654fdc28 Gail Sullivan posted a new activity comment https://musculardystrophynews.com/forums/activity/p/7112/#acomment-8174 Mon, 25 Jul 2022 02:37:51 -0500 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… Read more

In reply to - Gail Sullivan became a registered member ]]> f69ef3c5f12ad2d19d9e07f6bda11d8d Gail Sullivan replied to the discussion Cost of Living with MD in the forum Mobility Aids and Medical Equipment https://musculardystrophynews.com/forums/forums/topic/cost-of-living-with-md/#post-18096 Sat, 23 Jul 2022 03:13:34 -0500 Reply to Cost of Living with MD

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… Read more

]]> af85ea0c802612eec838ddcbe573e562 Gail Sullivan replied to the discussion National Registry for Muscular Dystrophy in the forum Science, Research, Clinical Trials https://musculardystrophynews.com/forums/forums/topic/national-registry-for-muscular-dystrophy/#post-18061 Fri, 01 Jul 2022 21:41:35 -0500 Reply to National Registry for Muscular Dystrophy

Is there a national registry for Miyoshi Miopathy?

 

]]> b1951a00e29b433cb9a4c6df37a75046 Gail Sullivan became a registered member https://musculardystrophynews.com/forums/activity/p/7112/ Wed, 14 Jul 2021 14:02:17 -0500 4