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Thank you Holly! I got diagnosed just 6 weeks ago and have had two crisis that ER thankfully got under control just by IVIG and steroids and kept me in ICU. Being able to relate to stories of real people going through this is warm. Thank you for sharing your story.
thank you Dr osuma for your cure remedy against my fibrosis disease ...herbs are the best
I view this brave lady's post after 6 years. She is right. Learn all you can about this aliment. As a male aged 73 I caught it 3 months ago as an Australian living in Vietnam. Luckily, I got back to Australia just in time just as I was having difficulty breathing. Few doctors know about this, but luckily I got diagnosed almost immediately because I am 'pushy'. The steriod treatment is hard to handle; however, it is a must because the IV treatment only lasts 3-4 week. Every case is different. Learn what yours is. This is an insidious ailment and 'ambushes' you with muscle weakness when you don't expect it. Be strong. Learn how to manage the MG. Don't try to fight against it. No matter what the hardships and limitations the MG imposes, be happy if you manage it well, it is not fatal, as are so many other neurological diseases. Cheers my fellow suffers. BE STRONG. NEVER GIVE UP. WILL TO WIN.
Mam i need your help.my daughter also affected this deadly disease.now it has any cure for this.pleasr help me
Hi. My dad passed away due to IPF this October. We bought a Philips simply go mini and a Philips concentrator for 2.4 lacs inr and 1.6 lacs inr. Dad didn’t survive. I hope your patients do. If they can help with these two devices let me know. We don’t intend to make any profit out of these. Just hit me up. Maybe the machines can be used by you?
Thank you for your KZread Billy. You are truly an inspiration and a positive person. I had J pouch surgery more than 30 years ago. I have had problems with pouchitis and life isn't always easy but is definitely worth it. I am retired but choose to still work some days. I see my grandchildren often and love to do activities with them. I used to travel sometimes and lately that's more difficult due to my dependency on nearby restrooms, but I still hope to travel in the future. I visit the bathroom between 8 and 25 times per day depending on whether I'm going through a rough patch or not. I often get up to visit the restroom multiple times during the night, so need to be extra kind to myself and to rest when I need to during the day. I'm alive and enjoying life and I'm so thankful for that. I am presently on biologics although not sure whether it's making much difference. I've tried Visbiome and it does seem to alleviate some of the pouchitis issues for me. I also have had problems with ligaments and didn't realize that it was related to my Crohns. This life is not for the faint of heart, but everyone carries some kind of burden and I'm used to mine now. Most of the time I do not let it prevent me from doing things I want to do. There are sometimes adjustments to be made, and I'm still searching, still learning better ways to cope with the diet, food, nutrition, output issues. The main thing is to be like you, Billy, try to remain positive, keep looking ahead and if you get stuck in a quagmire of depression and disease, do seek help. Sometimes, when things aren't great, I make myself count my blessings. I spend extra time in nature, or with people who uplift me. This helps me. I'm not going to live forever, but I do want to live my best life and do things to help others. I cannot choose my health or circumstances but I can choose how I live with them.
Thank you so much Doctor for useful video. I am a IPF patient since October 2018.
So where are we in 2023???
My brother died of it in past.very cruel genetic disorder
I was diagnosed MG even though no antibodies and interested in working with a functional doctor that you could recommend to get specific dx and coach for carnivores or keto diet. How can I get in touch?
Robert I have sc as well. I was 17 when I found out. It was à month b4 my 18th birthday and pain hit me bad. I got admitted 3 days b4 and early morning I had my gall bladder removed and 31 gall stones.
Mine started as Ocular MG and then went to gMG about 6-months after that. I truly believe it was brought on by a specific high blood pressure med I was on...as soon as I stopped it, it was an almost instantaneous change. I'm back to semi-normal. Not perfect, but a 60mg Pyridostimine (Mestinon) cut in half (to make 2 doses) usually is enough for me to keep it at bay on any given day...
My mom believes it was the flu vaccine she received - it happened right after that.
I’d love to know which med you were on. I just had the same experience with aldactone. 4 days I took it. I stopped it myself and notified my dr. I said nope won’t take it anymore. I thought I was going to go into a crisis any second. I feed 75% better today. I just take prednisone 10mg because for some reason this flare after many years of remission, I cannot tolerate any mestinon. I’ve tried so many different ways of taking it. When originally diagnosed I was on mestinon, prednisone 50 mg and imuran. I was even working full time as a nurse. I did feel quite horrible though from the steroids. But I had no choice but to work. I felt very flu like too. That was like 2014 or so. I have many autoimmune diseases along with it. I’m seronegative too. Musk too. Not sure how I went into remission. But glad I did. My stress level has been through the roof for 2.9 years. My other diseases are always acting up too. I’m seeing a third neurologist in my group. I think I might try to find an mg clinic down in Philadelphia to see if I can get better answers. I have Medicare and I have to pay an enormous copay for each ivig treatment and I just don’t have the money. It be close to buying a new car 😢
@@wendymcevoy7135 - I was on Pyridostigmine (Mestenon). But what I did was split the 60mg tablets in two and take them every 2.5 to 3 hours instead of the 60mg. It still gave me the benefit without the stomach issues. But since my post 7-months ago, I've slid down hill. I got Covid in April and have been really struggling with it ever since. Neurologist asked if I wanted to go back on Prednisone and I begged off waiting to see if I can get qualified for Vyvgart. Which, looks easy to get on TV, but definitely isn't!!
@@wendymcevoy7135 - I forgot to mention, the drug that I stopped was Amlodipine. It's contraindicated for people with MG...I had no idea.
It makes me want to blow my brains out
My medicaid would not approve my IVIG through outpatient.. only if I use the ER and I'm admitted. You are so right about the advocate in the family. Idk what I'll do when my mother passed away because she is the only advocate that I have ...
May your prayer go answered.
Thank you Holly for sharing your story. I was diagnosed in 2019 with Ocular MG that has fortunately responded well to Mestanon. I do experience lingering fatigue, especially in my legs when I walk too far. I am learning to live with my limits, and am no longer apologetic to friends or family when I have to rest. My latest visit to my neurologist was good, and she's pleased with how I'm doing. Listening to your video gave me great encouragement as though we were in person- thank you dear lady!!
I recall the days when. Usa and some others wanted tried the wrong journey for us
Sending much prayers to you all.
More about AMN, my brother recently diognos with AMN
You are an amazing guy and I salute your honesty - bless you forever!
God Bless and get you well I fully understand your experience- as MG also struck me down It is like no other disease and unless you suffer from it - no one will ever understand it. I use the analogy- what if you were confined to a wheel chair - but could walk around normal following medication What would that do to your mind - and to those around you MG is like this My closest ones - seeing me as normal - but never allowing for the massive debilitating effect of the disease Take care
Thank you for your story. I am just now getting a diagnosis after years of symptoms
Does anyone else feel as though there is such an emotional component to MG. I feel so weak emotionally somedays, I can’t get a sentence out without tears. I was kind of bada$$ if you will and now I feel like an baby. I eat, sleep and cry it is so overwhelming. I hope to be on the other side soon, been getting Vyvgart (6) treatments this year
This was two years ago. Where do things stand now?
They don’t even have it posted on the website anymore
This is such a great video. I’m awaiting my jpouch surgery, but just hearing you say you want to be a supporter for others is amazing! I’m currently designing a brochure for people who wake up from emergency stoma surgery. It’s great to know there are others wanting to help people!
Good advice on self advocating for oneself
I start my IVIG in a few days and this made me much more hopeful for it to work
Thank you so much for sharing. I experienced my very first symptoms 2 months ago. Everything happened so fast. Within weeks, I couldn't see with double vision then chewing, swallowing, and now breathing. I did IVIG a month ago. And now I'm currently going through plasmapheresis treatments. My last neurologist was just a general neurologist versus the current neurologist specializes in Myasthenia Gravis. I think I'm in good hands, hopefully we will find a way to get my symptoms under control soon!
Well I have this. I am not going to go to the medication route. No way. Pharmaceuticals and I don't get along I have snp gene mutations. Any synthetic is a bad recipe for me. No. My immune system's already dysfunctional. I've been in and out general and dystopia. Today it's affecting my mouth in my eye. My whole body is just weak. The pain in my center the chest is getting very noticeable. I've noticed that the thymectomy works for some and doesn't for others. So I read a study about the dysfunction of the thyroid. Overactive underactive immune system. Found an animal study. Without saying the pincushions given to try and trigger immunity overworked thymus gland. Which caused a dysfunction. Overworking it. Disrupting the T cell production. Annihilating the immune system. And issues with myasthenia gravis. If that isn't my life I don't know what is. Every single one of those pins I got my arm. Every year it would get worse and worse and worse I'd miss more school. More school more school. Years ago my diaphragm went crazy on me. Couldn't breathe. Definitely had fatigue and weakness. My leg wouldn't work. Then my eye. My eye is only giving me dystopia. Seeing double vision. Did the test. Have it. Both of them. within these years that I have been in and out in and out. I think I know what to do. I'm excited. Working with Dr tenpenny's office. Cuz this is an adventure. Got to put this puzzle piece back together. I'm going to do a nutritionally. I hope. Cuz if not I'll just sleep and sleep and sleep. And have a good day and sleep and sleep and sleep. God I hope not.. there's so much I want to do.
Please be careful. You can go into crisis quickly & the ER may not react quickly enough. Also, be sure if you have a small mouth that the doctor doesn’t intubate you with too large of the device that goes down your throat. The idiot did that to my mother & it caused her throat to swell…. Bad, bad situation. She was in the ICU for a month!
Thank you for this!
I’ve experienced all u are saying
I know the feeling I been on steroids 60mg since January an still on them an I’m takin antibiotics 3 days weekly an mestinon had surgery an did 2 5 day IVIg an Plasmapheresis still go into crisis’ now I’ll be doin a form chemo this month
I began having eye problems around age 40yo. I was diagnosed with dry eyes. Finally recently gave me Restasis that helps but obviously I still need 3 pairs of eye glasses to. see close, distant and sun glasses. I have been fatigued since bone reconstruction surgeries in the military 80s-90s.
Sounds great. You do Have to register and add your phone number 😞 hugs to all fighting this. Most stories I find the comments are off. Thanks for sharing. I hope your doing well
I tell myself all the time, it could be worse. I've known people with ALS and MS which is devastating. But living with MG is no picnic. Thanks Holly for sharing your story.
are you on immune supressive meds in long-term? that's the most important thing.
My mom battled with Idiopathic pulmonary fibrosis for years but I am glad right now that her condition swiftly changed positively as my mom can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from Dr.Schneider Lon on KZread..,
My mom battled with Idiopathic pulmonary fibrosis for years but I am glad right now that her condition swiftly changed positively as my mom can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from Dr.Schneider Lon on KZread.
My mom battled with Idiopathic pulmonary fibrosis for years but I am glad right now that her condition swiftly changed positively as my mom can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from Dr.Schneider Lon on KZread.
My husband battled with Idiopathic pulmonary fibrosis for years but I am glad right now that his condition swiftly changed positively as my husband can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from ( Dr.Schneider Lon on youtube
I Known myself to be a fighter ever since I got diagnosed with Myasthenia gravis, having symptoms reoccurrence of muscle or arms and legs weakness, impaired voice, double vision, difficulty swallowing, fatigue, shortness of breath and drooping of upper eyelid. I was pain everyday, My greatest Joy is that today I don't experience any of this symptoms anymore and I am completely cured of Myasthenia gravis after using a herbal medicine from Dr Madida on KZread.
I've been diagnosed with Fibromyalgia but I'm wondering if I have this instead, or this in addition to Fibro...I've tried to describe it to people as I feel like my muscles are wasting away.
I’m in the same boat. I was diagnosed with fibromyalgia even tho I think I have MG. My grandma passed away from MG.
you need to adjust the content
I know that one doubts herbal medication even Dr Ehimare, so is everyone i believe but right now i can boldly say i don’t doubt anymore especially herbal medicine treatment from DR EHIMARE from doctor Ehimare on KZread which cured my idiopathic pulmonary fibrosis
All thanks to Dr Madida on KZread for accepting to help me the first place, he indeed cured me of my IPF(Idiopathic pulmonary fibrosis) with his herbal medicine.
Thank you Holly..I do have my share for almost 4 years now..ptosis,double vision... fatigue..are all in..mestinon 3x per day as prescribed..when eye dropped .. bitter taste of steroids came to rescue .. yack.. worst thing with this are moon face and buffalo hump.. I'm used tó diplopia..I'm 63 now.. losing weight..I wonder if it's part of the disorder...hoping to hear more treatment and progress..I also got vitiligo...auto immune disorder too...stay positive guys we can skip this..from Philippines God bless us
Be your own advocate. I deal with insurance and send nurses to do infusions, please seek copay assistance programs
Thank you for the information, I just recently was diagnosed with it. It’s really scary to learn about the effects of the meditation the doctor prescribed.
I starte a month ago. The medication, it's side effects, the need to time it exactly and know what to avoid when taking them are a big issue to overcome. We have no choice if we wish to suvive.
I want to thank Dr Ediale herbal home for the help he rendered to me by getting Rid of idiopathic pumanary fibroids,(IPF) i was Diagnosed in June 2021,Dr ediale on KZread channel cured me finally
God healed my son(4yr) of this disease keep believing in him
My uncle is in intensive care with this on a ventilator right now hope he pulls through 😢
My mother had the same thing happen to her. She was 78 & pulled through. She had her thymus removed & is doing well.