Myasthenia Gravis: My story from Diagnosis to Remission
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- Опубліковано 31 тра 2024
- Myasthenia Gravis Diagnosis and Remission are on two opposite sides. My story with MG was a journey like it is for most. Being diagnosed with MG is the beginning, often followed by lower points after deteriorating and remission is seen as the highest point one can get to.
When I got diagnosed I search for information. I found some useful things, but one of the things that I always wanted to know was, how long? What was the time period it took to get worse, or to improve? So based off my own interest and seeing others asking the same questions, I thought this would be good information to share.
It will also serve as an introduction to myself and a timeline of the last 4 years, with MG, as well as what I think I can share that will be able to help other MG patients improve their own health too.
Chapters:
00:00 Pre Music
05:55 Stream Start - Intro
12:50 My Timeline Story
29:35 Q: Do you ever see yourself being "normal" or being able to work, train and be social in a full day?
30:45 Q: What ONE lifestyle change would you recommend that will make the biggest difference?
34:05 My Timeline Story (continued)
47:08 Q: What would be the first thing someone should change once diagnosed with myasthenia?
53:00 Q: When it comes to diet and food, which diet would you follow. is there one suited to myasthenia or should it forever be evolving?
56:20 Q: What would your advice be to "healthy" people when it comes to food and lifestyle?
1:00:00 Q: Moving forward, how should we help people become more aware of MG and its symptoms?
1:02:25 Q: Is there a place for alcohol in the "perfect" diet?
1:06:05 Going Forward: What's the plan? What will I share?
WATCH:
My Symptoms Video
• Myasthenia Gravis Symp...
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Music: Looking Back by Sappheiros.
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Time Stamps: (click on time you would like to go to)
05:55 Start
12:50 My Timeline Story
29:35 Q: Do you ever see yourself being "normal" or being able to work, train and be social in a full day?
30:45 Q: What ONE lifestyle change would you recommend that will make the biggest difference?
34:05 My Timeline Story (continued)
47:08 Q: What would be the first thing someone should change once diagnosed with myasthenia?
53:00 Q: When it comes to diet and food, which diet would you follow. is there one suited to myasthenia or should it forever be evolving?
56:20 Q: What would your advice be to "healthy" people when it comes to food and lifestyle?
1:00:00 Q: Moving forward, how should we help people become more aware of MG and its symptoms?
1:02:25 Q: Is there a place for alcohol in the "perfect" diet?
1:06:05 Going Forward: What's the plan? What will I share?
Whenever I am facing a bad flare I come back and listen to all your golden thoughts.
Hello and thank you for offering this resource!! My mom was diagnosed with MG about 2 years ago. Started with speech and swallowing issues then a crisis. No medications are helping. I appreciate what you are doing here!!!
I appreciate your testimony in battling MG. I have also been dealing with this issue since 2019. I have gone in and out of remission 3 times. Mine is aggresive general MG. I crashed once and almost met my maker. I am presently in remission. I agree with you in the need to change or modify your dietary lifestyle. In my case, I was initially prescribed Mestinone and Prednisone which have helped but they also carry lots of negative side effects. For me, cutting down sugar, salt and fatty foods has helped. I decreased my intake of Prednisone from 40 mg to 5 mg daily. From 14 daily pills of Mestinone to 9. My vision is quite normal now. In sum, MG is not the end. Life is precious and we must be willing to change our life style in order to enjoy more years.
Thanks for the insights! It was nice to hear about your story so far and respond to the questions. Keen for the future livestreams!
Thanks for the moderation! Also keen for future ones!
Will you both do an update? It’s been so long….
I believe MG is bit like how Hemmingway went bancrupt; First slowly then suddenly.
I got first droopy eyelid 1.5 years ago. It went in to remission after some weeks. Now it came back with double vision and with my jaw feeling bit funny/tired. The other day i looked at some older photos though from 7-8 years ago and noted that the droopy eye was slightly smaller already back then. So it has probably been building up for a decade or more before it was really noticeable.
Extremely helpful n ur vdos are a constant source of motivation n confidence i m a mg athelete tooo ! Cheers
Glad to hear that, all the best!
I’m so glad i’ve found your channel. I’m really struggling with MG. Diagnosed only 4 months, on mestinon and its helping a little. What sort of things did/do you eat which helped remission?
Mestinon helped me in the beginning, but I noticed that people seemed to need more and more of it, or moving onto other more serious medication. So I tried to find more sustainable ways to have lasting improvement.
If you seem my video about top resources where I mention the online copy of an MG book, that is sort of the basis for my eating. Low polyunsaturated fat, lower phosphorus relative to calcium, more glycine/gelatin rich proteins over methionine proteins, and then getting manganese rich foods in too.
I had a big focus on stress reduction in terms or diet (easier to digest foods), lifestyle (stopped studying and work for a bit), sleep/exercise/circadian rhythm (used to be awake at night a lot), and then relationships too.
Myasthenia Gravis Brooke Goldner, M.D. ua-cam.com/video/bCxUqyll-T0/v-deo.html
I have read a lot and watched a lot of videos. This disease is too rare, inconsistent and unpredictable to even give advice. One person success is another’s failure and Vice versa. Each person symptoms are different as well as successful treatment is different. I’m coming to the understanding that this disease is more of a spiritual illness than anything because it behaves like a bad spirit than an actual disease. I think we need more spiritual and chakra clearing and realignment that will ultimately reset the total energetic body. Resetting the energetic body will reset DNA code which is basically the problem because your DNA has been hacked and programmed to attack the body. MG patients including my self need our DNA codes reprogrammed back to its default setting. I believe is possible however, it hard finding a authentic shaman or healer to work with in this modern world where ancient remedies have been shunned and totally disregarded for modern technology. With all these technological breakthroughs we have more illnesses now than when we didn’t have all this technology. In fact MG is less common in developing countries with little technology than modern countries with access to resources in abundance. I’m will to try any and everything, but I believe a spiritual breakthrough is where the cure really lies.
Interesting ideas. Keep reading and keep learning. Share you experience, then we can all take in each others experience and put the pieces together for ourselves.
Im 5 moths taking my meds you are just giving me hope my symptom comes and goes.. I believe MG will leave me alone one day yes i will recover MG. Fo how long do you recover??
Thanks for sharing your story. Did you have your thymus removed by surgery?
No problem. No, I decided to not have the surgery. I saw that some people still were the same or worse afterwards, and I didn't think that the surgery was fixing the problem.
What book did you read? And what was your diet like to helped your remission
When your symptoms first started, was your eyelid slightly droopy, or was it extremely droopy off the bat? If not, did it get droopier over time? No need to answer if you don't want to. Thank you so much for your time and effort in this video! It is extremely helpful. Glad you were able to get better and stay positive. God bless!
Started slightly droopy. Like it was a little bit down. Then I took a break from work for a week or so because I thought I was just tired. It was fine then for a couple weeks, then started to get droopier over time. Thank you, you too!
Interesting. How long did it take before it went really down? Also, did you experience overall facial weakness? Thank you for answering all these questions. This is extremely helpful.
@@quail57 about 2-3 months until it went really down, and then better for a bit when starting medication, but after a while starting getting worse again. Yes, I did have trouble chewing and talking, so my jaw was weak
Did you experience any alternating eye turns along with ptosis?
Have you experienced Low Blood Pressures, Mild fever (-+101 F) with Breathing difficulty while MG was at generalized stage?
I haven't had any issues with low blood pressure, fever or breathing
I've had Ocular myasthenia gravis for 3 years. I've improved without meds, but still experience vertigo 24/7. Anyone else have vertigo with their ocular myasthenia gravis?? If my vertigo would go away I'd feel very close to 100%. I have no more double vision. My droopy lids are much better, but I feel I may be misdiagnosed because of my 24/7 vertigo... I haven't read one study article that says ocular myasthenia gravis causes 24/7 vertigo. Trying to see if anyone else has experienced this...
I have mg also and experience vertigo and dizziness. Neurologist diagnosed me with (persistent postural perception dizziness). I did vestibular therapy which helped a little but not enough so doctor put me on an antidepressant which helps with dizziness. It has helped a lot but not 100 percent yet. I might need to increase my dose.
OMG.....what medicine did u use for your vertigo?? I’ve been trying to figure this shit out for a year !!!! Does your vertigo feel like your drunk? Mine feels like I’m drunk all day but I don’t drink it’s literally the worst !!!
@@kathyperalta2270 what medicine did u get ?? I feel drunk all day everyday it’s awful I can’t go anywhere without having panic attacks sometimes I feel like I’m a faint
How are you after the vaxxine? I didn't take it. Was scared ....
Hi this is Vivaan
My mother has MG
From her mouth chewing to sitting to
Her neck and stomach muscles
All.are weakened due to an overdose that induced MG
Please please please help my.mom
You stated you healed naturally
Please explain
I want my mother to be fit and healthy like earlier
Please help ross
Hi Vivaan
If you see my video about "my top information sources" I talk about what info I used to help me.
In the description box of that video I have linked an online copy of an MG book and other articles that I read.
The focus for me was stress reduction, so stress coming from poor diet, bad work/living environments and relationships.
Myasthenia Gravis Brooke Goldner, M.D. ua-cam.com/video/bCxUqyll-T0/v-deo.html
What you think about the virus?
Any MG internet group in S.A.?
My husbands symptoms get worse when he gets overheated, so sitting in the sun isn't really an option...
So were you only on Mestinon ? dont feel you need to answer.
I understand. Heat used affect me badly too. I think it's stress related and the heat exaggerates that. But as I was able to lower stress, and get out more I saw more improvements. Being in full light is good, even if you can't be in direct sunlight much.
I was only on Mestinon. For general MG, that's risky but I didn't want to take predisone. But as I mentioned I had to give up a lot of other things, and pretty much stop my life to manage symptoms permanently at the time. So maybe taking immune suppressants is a 'safer' option short term.
@@mgathlete1431 Thanks for your reply.
Well done on your new health regime.
@@THEELDER1 No problem. Wishing your husband the best!
@@mgathlete1431
Thanks!