Holly's story: My experience with MG treatments
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- Опубліковано 12 лип 2017
- Holly is a wife and mother of seven, living with myasthenia gravis (MG). In this video interview, Holly shares with us the first symptoms she experienced, her journey to a diagnosis and her experience with some of the approved treatments for MG, including intravenous immunoglobulin (IVIg).
- Наука та технологія
I have had all the symptoms,like Holly was living life 7 min at a time , went through diagnosis hell for 5yrs. Finally, this old nurse was indulged and given Mestinon which took my single breath count from 15 to 44, let me walk without pain, sit straight up, breathe better at night but will still need bipap and oxygen.I no longer feel like I will die very soon. Still can't decide what is worse all the symptoms of MG or the way neurology and pulmonology acted towards me.
Yeah . I was told I must be on drugs even though they never did not one round of blood work or a urinalysis. I was at 3 different hospital s.. x 2 through their ER. It took almost 3 yrs 60 pounds less of body weight..to finally be properly diagnosed. So shame on all of the medical staff for the way that you have been treated and the way I have been treated. Like you said.. I don't know what's been worse
I teared, when you said you was able to wash dishes standing up. I truly understand you!! Thank you for sharing your story.
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.
Holly - thanks so much for sharing your experience. I was diagnosed in October 2021. My lupus doctor arranged for me to have testing done through the neurology clinic at that time; but because of the Covid situation, I am not able to get in to see a neurologist who specializes in MG until April 4th of 2022. Your down-to-earth description of your everyday experiences has helped me so much! Thanks for taking the time to do this. (For instance, I really related to not being able to stand long enough to wash the dishes. For some reason the things I can't do in the kitchen have bothered me the most - I can't stand long enough to prepare a meal - and sometimes I can't stand long enough to fix even one thing. The description of how you changed your hairstyle was helpful too - it actually made me laugh. Your description of your excitement about being able to stand long enough to wash dishes made me cry though - but they were *hopeful* tears of happiness for all of us experiencing this disease. I am happy to know that I will be able to stand to wash dishes again - really and truly! Thanks again for informing me and making my heart lighter!
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!
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!!
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.
Love hearing your story. Hearing bits and pieces which mirror my journey gives me comfort .
Thank you for making this video, you did a very good job.
Thank you for doing this. You did a great job!
Proud of you btw. I only have it in eyes and have fatigue late in the day. You being able to stand and do dishes was moving. Stay strong and thanks for your story. I’m going to start mine.
Can you imagine that she “has to hope her insurance company will pay for her treatment” That made me so sad to hear. God Bless you, I hope you are doing well. Thank you for sharing your story.
I start my IVIG in a few days and this made me much more hopeful for it to work
May all this new treatment takes you to the best place of you! Be blessed, have faith, pray and ask the lord you want to live a good life!
Thank you for sharing this, I’m grateful for this being newly diagnosed myself.
Thank you for sharing. 💜 I am trying to find other people with Myasthenia Gravis since it is so rare and most people do not understand how much it affects our lives. Finding a neurologist has been very difficult as there are not many where I live. It wasn't until I was airlifted from our local hospital to a specialized hospital that I finally saw a neurologist. I am scheduled to see him once more, but not sure if he takes my insurance. He said if he doesn't, he will refere me to another neurologist.
Hi my daughter 16 yrs old has mg i hope all mgpatient haved a normal life in jesusname
Thank you for your story. I am just now getting a diagnosis after years of symptoms
thank you for this, it was very helpful!
Bless her heart. She's a beautiful person. God bless you. 🌙💚🌙
I am very happy i got to hear your story i just found out i have mg. Omg you go through so much but god bless you and stay strong as i will as well
Thanks and best wishes Holly
Thank you so much for this video..
Exactly Holly, exactly. Everything you have said is so true. Good luck finding a new neurologist. I live in Florida. The last time I had a crisis the ER Doc told me they are taught about Myasthenia in med school now. Let's hope. I have been to ER's where they are looking in med books to read about the disease. One time I had an orthopedist come in the ER of a small hospital I was at and stepped in because he knew what was going on. Who knew?
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.
Hi Holly I just found out I have Mg my eyelid won’t stay open . You take care I’m more relaxed after seeing you and listening to you . Thanks love take care
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.
GOD BLESS YOU BEAUTIFUL LADY
Thank you for sharing your experience..I am MG patient since 2017 and had under go a series of procedure/laboratories..last check up is february 2020 and continued my meds.but last week of April i experienced drooping my left eye..its really hard coz i cant go to my nuerologist to see my condition now...i tried my best to look for an advise from any nuerologist but i cant..its really hard to have this especially that im a single parent and the sole provider of my kids..
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.
Good advice on self advocating for oneself
Holly, you are so brave. It takes courage to be vulnerable and share your story in a way that is so helpful to others. I am requiring that my occupational therapy assistant students learn about MG from your lived experience. I wish you continued progress and healing. Thank you!!
Thank you for your kind words
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
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 ...
Thanks so much for sharing your experiences and your advice will be taken on board. My husband has MG.
I so hope you're doing ok.
Plz send your contact number. My number 9501212277.dr sadheesh Kumar
@@dr.sadheesh8714 hyyy broo
Thank you for your video. You did a good job. My husband was diagnosed with MG 2 years ago, he has general and ocular. He use to wear an eye patch, but stopped wearing it because of the irritation from the strap. Now he has a piece of material that slips over his glasses and it looks very sharp and is much more comfortable. I have been a promoter of clean eating and benefits of supplements for a very long time. In re. B 12 vitamins, we use a liquid that is Methyl because it is much easier and faster absorbed by the body. He recently stopped taking Mestinon (spelling?) because it made him nauseous all day and we are supplementing with vitamins and staying off things his body is allergic to. For example, nightshade foods (tomatoes, eggplant, etc.). Sometimes he gets headaches behind the droopy eye and for that he uses an all natural pain cream. His neurologist was so impressed with the natural products he's using that the doctor even refers people to us. We're having good success with it.
Plz send your contact number. My number 9501212277.dr sadheesh Kumar
Hope your husband is well. Can you please tell us more about supplements?
Hi! I have been recently diagnosed with MG. I would like to know more about clean eating. I would appreciate any information you could share with me. Thank you so much
My husband been diagnosed 2 month ago. Our DN doctor placed him on AIP diet, and after few weeks his double vision and eye droopiness subsided. He’s being tested for food allergies and leaky gut. He had seen a neurologist who prescribed mestanon even without blood test. The drug caused bad side effects. No other option was given and the doctor dismissed a diet route basically said you can’t beat this disease. We’re on the look out for a new neurologist. We need to have someone with open mind and compassion to fight this disease. Good luck for everyone who is struggling with this!
Yes for sure get another doctor . Look into natural healing herbs Asian medicine. Is on point be well ❤
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 making video , this really help me , I MG since November 2019 , new diseases MG
Plz send your contact number. My number 9501212277.dr sadheesh Kumar
Mirtazapine works good for Myasthenia Gravis
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
That neurologist doesn’t sound entirely competent; I feel like he should’ve had you down for follow up sooner than a year because of your complaints consistent with generalized. Also, that’s an extremely fast taper of prednisone for starting at that dose! Glad you’re feeling better otherwise!!!
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
IVIG is the best treatment. I always feel normal. It really I'd love me a miracle ❤️. unfortunately my Medicaid will not cover it once a month anymore.. according to my Dr. So I go through the ER to get it done
After how many days the effect of magnesium appears
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?
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!
I have MG too, soon ill get surgery
Hello how are you now?
Are you of negative blood type? I have ocular MG as well. Working on an hypothesis about MG and - blood types.
I have myasthenia and I’m o negative.
@@kathyperalta2270 My mother has it & she is A negative.
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.
I’ve experienced all u are saying
Prednisone makes makes me violent..it helps..but just can’t take it
God healed my son(4yr) of this disease keep believing in him
Lol i had to lower my prednisone dose for sure
you need to adjust the content
very ill . I don't know... I have symptoms of either food poisoning or something more serious like myasthenia gravis or MS. multiple sclerosis I hope it's not serious..At first I thought it was a reaction to a hobo spider bite.
Be your own advocate. I deal with insurance and send nurses to do infusions, please seek copay assistance programs
When you said you couldn’t stand for more than 10 minutes was it because of pain or what? I really need to know because a neurologist has told me I may have ocular mg but watching your video there were certain things that rang true for me...
I got MG 1 yr. ago while on my birthday cruise in the middle of the Atlantic Ocean. They thought I was having a stroke. Voice garbled no energy or strength couldn’t eat! Still get a back ache doing dishes. 🥲 thanks for sharing.
How u doing now
i get a upper backache washing dishes. so glad you posted!
So back aches are part of the mg did your give you anything for pain
@@Angelahuskin hahahahahahahahaaaahaaaa I'm going to go out in a lemon answer her question heck no. I have ehlers danlos syndrome hypermobile and vascular. I get gastroparesis pots I have methylation issues. And my goodness I can't wait to get a doctor lined up cuz I think I have this. As I use talk text, I can see two lines of writing. Yeah I think I have this. Yesterday a total of driving there and back 2 hours. I walked for maybe 20 minutes. I feel like I ran a marathon, or like the air that I walk through has become water. My limbs are heavy all over. If I hold my phone and look at it sometimes I will tire and drop it and nod. And my speech is messing up. Oh yeah I think I have this. Finally. Yesterday I took my son to the doctor and I'll be going to the same one. The front desk lady asked me if I wanted to switch the one doctor and I said no I'll stay with this one. As I was leaving I heard, you're going to find out some information in your going to change that appointment. I brought it up to my son and he's like well what is it and I said I don't know I haven't found out the information yet. Found out last night. And I'm like no way. What do you know this morning it hit me so hard. I'll go grocery shopping and it'll take 3 days for me to recuperate. Yep oh goodness.
@@Angelahuskin I don't know if you live in America but in America doctors don't hand out pain pills. I forgot to put this in. I live with pain everyday of my life. If doctor's offer you anything for pain, they offer you methadone. Heck no I can't believe that they put ultrams as a super deadly class drug. Ridiculous. Those things weren't even habit forming. An addict would be like no way I'm not taking that. Of course not. Because it wasn't like a pain medicine like they have today like the oxys or even Percocets or Vicodin. I use medical Mary, and kratom. Red vein. Helps a lot. Lots of heat and ice.