Thank you for sharing your story! I was diagnosed with Seronegative MG in Dec 2018 after five years, four hospitals (including Mayo) and more doctors and tests than I can remember. A Mestinon trial was the key to unlocking the mystery of how I went from being very physically active to needing a cane and then a wheelchair within only a few months. I've been receiving IVIG for about six months now and it really did wonders, except that the better I feel, the harder I push myself to do those physical things I probably shouldn't be doing anymore. My Neurologist recently added Mycophenolate (immunosuppressant) to the mix but I understand it can take several weeks to see any real benefit. I too am continuing my own MG research and trying to find a way to improve upon the progress I've made and hopefully be able to help others one day. Stay positive and stay well!
Thanks! I appreciate you sharing your story. I teach respiratory therapy and your story helps others learn. Hope you don't have to experience an MG crisis, but if you do, we will be part of the team caring for you at that point.
+Carol Lopez Myasthenic crisis is a potential complication of MG where the respiratory muscles become affected. Just as with other muscles when you have MG, they get weaker with repeated use, and since the respiratory muscles are obviously being constantly used, during myasthenic crisis the respiratory muscles quickly become too weak to provide sufficient oxygen to your body. It is a life-threatening complication of MG, and usually requires being put on a ventilator until the crisis is over. If you ever experience shortness of breath or any difficulty breathing, you need to _immediately_ call 911 (or the emergency services number in your country if you are not from North America) and be transported to the emergency room. This is something that you really should have been told when you were diagnosed with MG, since unlike other MG symptoms which are typically only quality-of-life issues, without prompt treatment, myasthenic crisis is fatal.
I had serious blood poisoning after visiting Vietnam and then strong pain-killing injections in my lower back under aneastthic. This immediately triggered Shingles and a few months later triggered MG.
Indeed. The two big triggers that affect MG symptoms are 1. Negative: STRESS. 2. Positive: LOVE and understanding from family and friends. This is a definite plus, but unfortunately, not always easy to get. BTW, I was on 50mg of steriods per daym I had no physical symptoms, but it made me intolerant and very confused. Family members did not understand this at all,, despite my many pre warnings about the effects of steroids. After 3 months I am down to 30mg per day and a little better, though still a bit confused at times.. Cheers from a 73 year old male in Western Australia. @@oldtimefreedom
watching this because i am currently having worse flare up since diagnosed 2018 - Not a happy bunny at the moment as i was doing so well... Stay well everyone :) Thank you for sharing
Hi, my biggest battle now is the drugs prednisolone and Azathioprine. The disease itself, seems to be ok… the drugs cause serious mental health implications! My advise would be …. Don’t take them. Not long left I will be drug free! Thanks for asking,hope you’re well too!
Hi thanks so much for this. I have been "diagnosed" with MG in august of 2017, and my symptoms have all been more aligned with occular. I am lucky that for the most part my symptoms have been fatigue with the eyes and facial muscles, but of course being a young person who struggled with body image issues for a while and was finally feeling confident in myself, these sort of changes have been a huge hit. I am currently on 45mg of prednisolone and desperately want off as I have all the terrible symptoms. your story gives me hope and courage though. thank you for sharing.
Hello Rachael I was diagnosed with ocular MG in my eye started with Mestinon yesterday 1 only worked for about 12 hours … did you need a surgery ? Hope you are going and feeling better 😊
Matt your videos are really informative and I have just started taking a Vitamin B supplement with apple cider vinegar (1tbs daily). Have only got Ocular MG (first diagnosed in July 2017) at present but obviously don’t want it to spread. On 60mg of Mestinon 4 times a day, but have to take 15mg Propantheline 3times a day to counteract the side effects (wind and diarrhoea). Best Wishes to you from UK.
I m diagnosed with generalised MG gone through thymectomy now i m doing well....but sometimes people make fun of me because of face paralysis i have to just ignore them nuthing else i can do...can u help me regarding this.....
Hi, I have ocular MG too. I came down with this 4-1/2 YO. I changed to a whole food plant based diet 6 months after the positive diagnosis ocular MG. In four months most of the symptoms went away. I still take 120 mg of Mestinon 3 times per day for weakness in voice and jaw muscles. I know everyone has different symptoms and varying degrees of severity, but this worked for me.
that's great John! Do you follow a particular eating plan? while i don't take Mestinon daily, i take it when needed and it does help me for about 4 hours...
I follow a low-fat vegan diet. There are a lot of websites with info on how to get started. There is a Dr MacDougall site and nutritionfacts for more information.
Hello John I hope you are doing great Finding this videos and great comments makes me happy I got diagnosed with MG ocular yesterday No other symptoms in my body I started Mestiton is working g for 14 hours so far 1 pill only ! Did you have a surgery ? They are suggesting surgery wich I’m not into I’ll follow the natural advice Adding Vitamin B, C, D starting today and changing sone stuff in my diet Thank you 😊 for your help
Thanks for sharing. I've had MG for 35 yrs, diagnosed as a 26 yr old male. Now retired am looking into your solutions having watched your vitamin vids.
Hi, I'm sorry to hear about your diagnosis, even though it was so long ago. I was wondering if over the 35 years, although it's a relapsing/remitting condition, if on average your symptoms have gotten worse or stayed the same as you've gotten older?
Imuron sounds like a great alternative to prednisone. I am allergic to Prednisone. i stayed ill with MG until my allergy to Citrus was found. Also, I have had MG for 35 years. Also, I cannot use Splenda (it has freeeze dried fruit in it). You are very good at your taping. I have many of your symptoms, also. Captivating work you did on this, my husband likes it's message, also.
This really helped me feel Better about things. I have ocular MG. I also had a stroke which makes me walk like I'm drunk because it affects my balance. I've started the vitamins and the diabetes diet. Will you please let me correct you on something? ......A theory is a hard proven fact. Like the Theory of Relativity or the Theory of Gravitational Pull. Before the proof it's a hypothesis or an opinion or something. Almost all of us use the word In the wrong way. learned this when I took science classes.
My hubby really 'got this' video in a great relief, since I am dx'd with MG for 36 years now. I am like you, similar. I have droopy eyelids and have experienced 2 catastrophic events, which hospitalized me. I am thrilled you are doing this well, sure seems you may being doing so well that as you become older you may not have an event like mine. I share my home with a mobility dog..her pic is accompanying this. I have a mobility chair, and every time I hear congenital diseases may get dropped from healthcare I wince! My healthcare pays everything. I joined AARP at 55 and when I became 65 I was assured of my care on United Healthcare's Plan F. Love it. Only the monthly is 195.00 per month as my age is now 69. I was getting IVIG for 6 months with in-home care. It would cost less in a hospital care facility or a clinic providing IVIG. I had it at home..cost is more. Now I take liquid Mestinon. I am active as I can be. Today I had difficulty walking for very long. I, still, would rather walk while I can or I may loose the ability, right?!! I did loose the full usage of my left ankle and require a cane for my left foot ..use the cane on the right side. I had (in the crises-hospital stay) a "rag-doll" left foot. Pretty much speaking is ok...some days all wrong.
Hi, I'm sorry to hear about your diagnosis, even though it was so long ago. I was wondering if over the 35 years, although it's a relapsing/remitting condition, if on average your symptoms have gotten worse or stayed the same as you've gotten older?
Thank you for sharing your story. I was recently diagnosed with MG and I am currently taking 20mg of Prednisone. I need to change my eating habits for sure. Something my wife will be happy about :) Do you have any experience with CBD oil and MG? I've started with CBD oil, Charlottes Web, about 2 weeks ago. It has been helping me to sleep and relax so that's good I guess. I will be tuning into your other videos for sure.
Very good video, I would like to talk to you more and see if you could help me on some tips because i been diagnosed with MG since i was a little kid i was around 7-8 years old and im just so frustrated can’t talk much hardly anything, can’t eat anything by mouth only liquids, i am taking Mestinenon also and some other experimental drug for quite some years now, I’m glad I found your videos, hopefully to hear from you soon, am at the point where I’m off bed for like a few hours and i have to rest for 2-3 hours and like that all day every day for the past few years, now i seen you said Vitamin D has been helpful. I’m gonna try that hopefully it works for me as well. Im 35 now btw hope to hear from you, take Care btw i weight 67lbs
Hi M G Matt,I have seen all your videos on MG.(and your hobbies too!)I appreciate and really like your very simple and studied tips and Nutrition-centric approach. I know you are not a doc but can you help me and tell me ur opinion on my queries?.. Is there any relation between IBS-C (Constipation prevalent)and Myasanthia Gravis?Because my Chronic IBS C responds to any laxative only 10%.I have tried all forms of laxatives.Surprisingly all natural and Allopathic antibiotics work on my constipation a couple of days only,and even antibiitics fade away in 2-3 days. .......... Like you said,Eat as if you are a diabetic,I strongly agree.So can we eat the substitutes to Sugar?or substitutes act same as sugar? Does ptosis include No blinking of eyes? Regards,Mac B.
Greetings from Perú 🇵🇪 Thanks for sharing your story. I'd like to know if you Think that if thimectomy would have helped you faster or maybe you think that you should have changed everything on your remission. Hugs!!
I hope you see this how long did you doctor take you off prednisone and how did you step down from it? I am at 40 mg right now I mean my doctor this week and hopefully to discuss coming down from the 40 mg of prednisone.
Thank you for this video. You look great for having myasthenia i still have a droopy eye and my voice fades aswell. Do you feel imuran has help? I was diagnose in 2013 and only taken prednisone and mestinon nothing else. Had to get off prednisone and now im only on mestinon. But i feel like it's not working. I will look at your other videos for tips and help.
thanks Carmen, I wish I had the footage of when I was a total mess to compare this to... please watch my "healthy tips for better days" video, that has my basic philosophy and what is working for me...
1) Cutout sugars and eat like you have diabetes 2) Discover what are your sensitive foods - abstain for 2 weeks to find out... gluten, dairy, legumes...etc... 3) High doses of Vitamins B, C, & D
Thank you for your video testimony! My brother 60y/0 was just dx with MG but none of his tests (blood work/MRI/ Exam) confirm the dx. Any thoughts? He slurrs his speech and has difficulty swollowing 5 months now
Tops to you! Great job in telling your story. I have had several crises that put me in the hosp. I am, now, found to have a "non-alcoholic fatty liver disease" NAFLD. I believe IVIG is responsible for this. IVIG and Non.....and they will state it. I am allergic to Pred. as it choked me worse than MG does. I have no thyroid condition but have thrroid nodules...seen in ultrasound as growing. Severely low energy. Now in remission ...was on a huge bottle of liquid Mestinon and now on NONE. My neurologist gave me an MRI (probably looking for MS) and found my brain to be normal. Diagnosed at 32 when seen at Kaizer clinic of Bellflower, CA....mestinon helped me when I was choking and with droopy eyelids. I can be seen at facebook as Katherine Hershey and Karen Whitefawn Hershey, and Karen Hershey.Now 69 yrs. old. I work as a Federal Claims Assist for War Veterans with my associates. Hot weather is the enemy, and now at 110 today in Dallas, TX. Staying indoors. Married 33 years, happily.
Hi I just been diagnostic with MG last week after 10 years of ......., I do believe that our blood type is involved in this disease. plz are you A blood type?
