Myasthenia Gravis - Healthy Habits

Can one really enjoy a better life after Myasthenia Gravis? 

You may have heard or read that there is no cure for Myasthenia Gravis (Myasthenia Gravis) and it will only get worse.  Many people tend to talk or think about suicide but is it possible that Myasthenia Gravis can be a blessing?  Can people really lead an even better life after getting this scary disease?

There are people who manage to recover and who feel that they lead an even better life after Myasthenia Gravis, it is possible but it is not easy. 

For thousand of years medical wisdom has kept repeating, softly, reminding us again and again the most important list of actions we need to practice to reverse many chronic illnesses.

Practicing even a simple correct healthy habit it can be much more difficult than we think.

We need to have the correct view, correct focus and right action. In order to be able to achieve these, we need the right thoughts and right speech. We also need to do good and right things so our minds will not be confused.

A person who practices constant mindfulness will find it easier to see things more clearly. On top of all these we need to understand and practice how to control our ego.

One common mistake a person can make is to keep talking uncontrollably, thus not being able to listen and understand how to solve their problem. They have to manage their ego, their thoughts, speech and action. They need the right mindfulness, concentration and livelihood to be able to learn to listen to the whispering solutions. That is why there are many places in the world where people gather in more peaceful settings to learn how to see the solution more clearly and reverse their chronic illnesses and improve their health.

Ancient wisdom talks about letting go a lot of meaningless pursued, letting go of our ego and planting the right seed to achieve more happiness. With this will one be able to have a even more enjoyable life. 

There are people who have Myasthenia Gravis and still have a very good life even after going into crisis, being intubated and losing most bodily function.  Almost all patients can recover from a flare or crisis, to a certain extent.  There are many testimonies of patients in remission with medication and there are also a few cases of patients in full remission without medication.  

The key is not to be stressed and to keep learning. Stress, worry, anger and doing too many things can cause Myasthenia Gravis to get worse. There are Myasthenia Gravis patients who have recovered to have no more droopy eyelid, run 5km, walk 20km, carry 40kg, drive, go to work, enjoy and travel the world, etc.

I have no money for treatments, I am afraid I may die soon.

If you do not have the money to pay for expensive treatments and you think that you may die. You can study supplements like Shilajit, Huperzine A and more. They can be bought from iherb.com, or other cheaper places. Keep looking, searching and asking to find cheaper prices and better solutions. Shilajit can cost as little as $15 for a year supply. There are people who have tried Shilajit and was able to get off myasthenia gravis medication. Many people who have weakness in the body have tried shilajit have amazing testimonies to share including those with myasthenia gravis. We do not know if this can be long term or is there side effect. Shilajit have been said to been used for thousands of years for body weakness and longevity and is easily available. Shilajit is rich in fulvic acid and other ingredients similar to those found in some fertiliser that make plant grow big, healthy and strong. Some claim it is the fulvic acid that helps make us better and increase our strength. Many different brand of shilajit even have high amount of fulvic acid stated. More research are needed to be done. They are also claim that shilajit helps promote the half life of cortisol in our body that is why people with autoimmune disorder who takes steroid seems to have good result switching to cheap shilajit. There are also statement that say those with autoimmune disorder should not take shilajit. Hopefully there will be a study soon on this subject to clear out this contradiction.

Treatment of myasthenia gravis in China

There are specialised Doctors in China who have claimed to have reversed many Myasthenia Gravis cases.  There are also Chinese remedies that claim to help Myasthenia Gravis. 

There are books from China that discuss how to reverse myasthenia gravis. It may be possible to find them on Amazon.com. You can use Google translate to read the book page by page. 

Spend your time researching over the Internet to learn what you need to do to get better. Get second, third or many opinions if needed. Keep asking politely.  With the internet, it is easy to search for possible cures around the world.  Make this research your top priority, keep looking and don’t give up!

The correct medical treatment with healthy habits may sometime see recovery very fast. 

The correct medical treatment with correct healthy habits may lead to remission for some patients with Myasthenia Gravis, even if you are above 50. 

In your quest to find answers to your problem, give yourself some time to learn all about Myasthenia Gravis and its treatments.  Many people who make an effort to find solutions for Myasthenia Gravis may still take years just to understand the basics of this autoimmune disease, and most people give up too soon.  

Make the effort to look into the details.  Search the comments section on social media for testimonies on Myasthenia Gravis patients and what they did to recover from severe Myasthenia Gravis.  Join support groups on Facebook or Telegram to ask your questions and find your answers.

There are people with severe Myasthenia Gravis who were intubated, bed ridden, and at one time even lost their hope for life, but still recovered to lead an even better life than before they had Myasthenia Gravis.  Overcoming their Myasthenia Gravis crisis helped them to appreciate the valuable things in life.  They slowly learn to enjoy their new life, by giving up the stressful life they used to lead and learning to relax and enjoy the real important things in life. Some learned to work and even do a new business online. 

Stress is a BIG factor in worsening Myasthenia Gravis

Stress may cause Myasthenia Gravis to get worse, and severe stress can cause you to go into a flare or crisis.  So managing your stress is crucial for a Myasthenia Gravis patient.  Take lots of rest.  Relax, don’t stress over the unimportant matters and focus only on getting back your health.

Deep breathing is a very helpful tool in reducing stress.  When faced with a stressful situation, take slow, deep breaths to bring down your stress levels.  In fact, doing deep breathing a few times a day (and any time you feel stressed) can help your Myasthenia Gravis weakness, lower your cortisol levels and prevent tiredness.  

You can try meditation, breath yoga, qigong or other exercises that focus on deep breathing, together with frequent rest, to help alleviate Myasthenia Gravis symptoms.

What to do in a crisis

If you are in a crisis, the right treatment may see very good results within 30mins, a few days, a few weeks or a few months.  Your eyes, strength, eating, talking and breathing can recover very fast.  

Medication must be taken precisely.  A slight incorrect dose can have very different results.  If you are not recovering, it may be because your dose or medication or timing is still not at optimal levels.  Learn and research these in detail over the internet.  Don’t be afraid to clarify your doubts with your doctor, with other Myasthenia Gravis patients you know or even in the forums and support groups.  Seek a second opinion if you think your doctor may not be experienced enough. Go to the hospital emergency department if you feel you have hard time breath, choking or becoming very weak. If you have a choice learn which is the hospital that have good experience with myasthenia gravis. Not all hospital have good Doctor's that can treat myasthenia gravis. 

A BiPAP can prevent the worsening of an Myasthenia Gravis crisis

If you are in a crisis, learn to fall in love with the BiPAP even if it feels uncomfortable at first.  The BiPAP can help prevent you from being intubated when your crisis worsens, especially if you have breathing difficulties and you can’t breathe on your own.  

Because the BiPAP helps to regulate your breathing, it may solve your inability to breathe while laying down to sleep.  It keeps your breath even and deep, calming you down, and may also help you to sleep if you have insomnia. A few days on the bipap have been known to solve breathing problems that even intubation cannot solve. 

Sometimes, you need to use the BiPAP for only a few days before you start to recover and be able to breathe comfortably on your own.  Other times, it may take much longer (for your medications to kick in) before you can stop relying on the BiPAP to help you breathe.  Many people may find it a struggle to use it at first, all will come to love using it as it helps them to sleep and can prevent intubation in a crisis.The alternative may be intubation which is a lot more suffering. 

Finding the right doctor

Rather than worrying and stressing over your Myasthenia Gravis condition, focus your energies on working with the right doctor, studying and researching for solutions.  It takes time, sometimes many years, to find the best combinations of treatment.  Some patients even go through over 50 Doctors.  It is common for Doctors not to give enough medication as Myasthenia Gravis conditions can change very fast.  

So it's good to learn about the medications that you are taking and how they work to manage your Myasthenia Gravis symptoms.  This can help you understand what you need and help you to discuss with your Doctor what works and what doesn’t.  Don't give up!  Once you get it right, you will be up and doing all kinds of things. 

If you are struggling and cannot get a neurologist appointment soon, you can try asking in the support group for advice, some are able to find other doctors. Others are able to find ways to cope better. 

Should I do surgery to remove my enlarged Thymus?

For those who are offered surgery to remove their thymus, there is a chance of remission without medication according to the doctor.  This is especially so if you have an enlarged thymus and are able to practise the correct healthy habits.  

Delaying your operation may keep you on a high dose of steroid/prednisolone for an extended time.  Steroid/prednisolone is a medicine that is frequently prescribed by doctors to Myasthenia Gravis patients.  It is effective in treating patients but is known to have detrimental side effects if taken over a prolonged period of time.  These side effects include osteoporosis, breaking your bone easily, bad eyesight, diabetes, weight gain, etc.  

Surgery to remove the thymus may enable you to reduce or stop your dosage of steroid/prednisolone.  This can reduce the side effects, and with healthy eating habits and lifestyle, help to reverse osteoporosis, diabetes, weight gain to a certain degree, if not almost all.

There is a lady who removed her thymus at 43 years old and lived to 90 from the small community we know. There may be many more who lived longer that are outside of our community. If you have decided to remove your thymus, it is better to do it as soon as possible. Those who delay their operation for a few years may see more long term damage to the body, especially from high and frequent usage of steroid/prednisolone. 

Is Thoracoscopic Thymectomy Operation a viable solution? It’s very expensive 

If thymus operation, thymectomy for Myasthenia Gravis is too expensive in your country and you cannot afford it you may research in India. In India there are very famous hospital specilize in myasthenia gravis and thymus sugery with advance key hole surgery performing da vinci robotic thymectomy. This type of operation can be found in India at much lower cost with good reviews. They also can be found in China. 

Take note on side effect of western medication and learn how to prevent them

For some people who are in crisis, they may need a combination of mestinon, prednisolone(steroid), cellcept, ivig/plasmapheresis or their equivalent to get back their strength.

The prednisolone/steroid can make you lose bone density fast. There are people who can break their bone just from a very hard cough, when taking prednisolone in high dosage for a long period of time, eg. 60mg prednisolone for a 60kg person. If you are taking a high dose of prednisolone, you want to reduce it as fast as possible, eg. 2mg prednisolone instead of 60mg. 

If I stop taking my meds, I will go into crisis; but if I keep taking my meds, my health will be damaged in the long run.  What should I do?

Many people go into crisis because they refuse to take, reduce or skip their prednisolone, when they need to take them accurately. The more they do this the more they cannot lower their prednisolone fast.

The way to reduce prednisolone is to take all medication correctly, including your high dosage of prednisolone, eating healthy and leading a stress free healthy lifestyle.  Work with your doctor to gradually taper down your intake of prednisolone (too quickly and you can revert into a crisis, too slowly can be bad for your health in the long run).

Dealing with the side effects of medication: 

Osteoporosis

If you have developed osteoporosis or osteopenia from prednisolone/steroid, you can study the benefits of supplements like vitamin k2mk7, calcium, d3 and natto.  These food supplements work together to keep the bone strong, and can help to prevent worsening of osteoporosis or osteopenia.

Doctors also recommend certain weight-bearing exercises like weight training, stomping and jumping, depending on the severity of your osteoporosis. Exercises to improve balance like yoga and taichi can also help prevent falls.  Do check with your Doctors to make sure you can do them. 

Steroid-induced Diabetes & Weight gain

Consuming high amounts of steroid/prednisolone can cause diabetes and weight gain.  You may find yourself having to urinate every 30 minutes or even peeing in your pants.  This may be due to steroid-induced diabetes.  It can be reversed when you take the correct medication to reduce your hba1c.  

It is possible to manage or reverse your diabetes in as fast as 90 days to a few years. You have to reduce your intake of sugar/carbohydrate and unhealthy meats. It is important to eat lots of nutritious green vegetables and plant food, and take the correct amount of healthy protein.

Eating healthily can also have a positive effect on your Myasthenia Gravis condition.  Work with your doctor to slowly reduce your steroid medications and you should be able to reduce your diabetes medication.  And when these are under control, the weight gain, puffy face, twitching, peeing frequently and some other problems would be significantly reduced or reversed.

Can changing my diet and lifestyle help me recover?

Foods and Supplements that can help to manage Myasthenia Gravis symptoms and get you out of bed in the mornings

Some supplements that may help Myasthenia Gravis patients are: moringa leaf powder, shilajit, pregnenolone, huperzine A, ashwagandha and blueberries, healthy oil, creatine, etc.  Study their benefits and side effects and see if they can help you. 

There are people who have used huperzine A to replace mestinon/Pyridostigmine. Huperzine A does not give you side effects like diarrhoea and severe stomach ache like Pyridostigmine does, but it may take time to figure out if you can use them.  Severe stomach ache can be prevented by eating food or a banana before taking your mestinon medication. 

There are Myasthenia Gravis patients who use shilajit to lower the amount of prednisolone/steroid they use. It is said that shilajit helps to prolong the half life of steroids or cortisol in the body.  

There was a case where a person claimed he was having an Myasthenia Gravis flare and had to increase his medication to 60mg of steroid, 4x120mg of mestinon, plus 3x500mg (8am) and 2x500mg(8pm) of cellcept.  He was still having double vision.  He took 500mg of Shilajit in the morning and 500mg at night and his double vision cleared within a day.  He continued taking Shilajit everyday and he was able to taper down his steroid, mestinon and cellcept.  When he increased his Shilajit to 4x500mg a day, he was eventually able to get off all Western medication totally.  He was also using the cheaper kind of Huperzine A, creatine, moringa leaf powder and astaxanthin as supplements.  

There are claim that taking a high dosage of vitamin D helps with Myasthenia Gravis but information is limited. 

Please be very careful when studying and testing alternative solutions as it may take time to learn how you may use them.  It may be incorrect or unsuitable for you.  Some of the information can be misleading.  It is very common to create an overdose situation with a combination of current medical solutions, which can lead to a crisis or make Myasthenia Gravis worse.  However, if you get it right after taking the time to learn, the results can be amazing for some. 

Magnesium can worsen Myasthenia Gravis weakness

Be very careful in taking magnesium or foods that are high in magnesium. It may cause severe weakness very fast. 

Eat enough protein to prevent too much muscle loss, also do light weight training to keep your muscles 

During a crisis - especially during intubation - where there is a prolonged period of inactivity, Myasthenia Gravis patients tend to lose too much muscle.  Learning about protein-rich foods and supplements like creatine powder, whey protein, bcaa, protein like beans, lentils, nuts, eggs, etc can help to reduce muscle loss in patients.

This, together with simple weight training, can help to increase or retain your muscles.  It can also greatly improve your ability to balance and move, and may also help reduce muscle pain.  Weight training can also help treat or prevent osteoporosis and reverse diabetes.

A simple 30 seconds squat and 2 minutes dumb bell arm workout can result in great improvements to your well-being. It is important to start with very light weights and slowly increase the weight as your body builds strength. 

Focus on taking enough protein. Too little protein will mean your body is slow to recover and may cause it to ache more.  Too much protein may also cause problems.  Be very focused on finding out what is a balanced diet for you.  It is subjected to change with age and other variables. 

Modest exercise and weight training may help with sleeping well, osteoporosis and absorbing nutrients. Over exercising and pushing too hard can cause Myasthenia Gravis to get worse.  Monitor yourself as you exercise and find a balance of exercise and rest that works for you. 

Correct healthy habits for long healthy life can also help you manage or even reverse Myasthenia Gravis

The correct healthy habits that help you reverse your Myasthenia Gravis are also similar to those that are used to have a long healthy life. The great news is you get to learn this earlier in your life if you are willing to study and keep testing. 

Learn about a very powerful vegetable soup (google hippocrates soup) and raw green vegetable smoothie (beetroot, blueberry, carrot, kale, spinach).  Both are very easy to prepare and can be bottled up in the fridge and drunk over a few days, saving lots of time and effort.

Research on acupuncture, Qi Gong, yoga and deep breathing for Myasthenia Gravis patients. 

Deep breathing helps to lower the cortisol and reduces the stress levels in your body.  Taking up activities like Qi Gong, Yoga, Tai Chi and meditation can all help to train your body in deep breathing.  

Acupuncture is another tool that is used by Traditional Chinese Medicine doctors to treat Myasthenia Gravis patients.  Take the time to learn how these alternative treatments can help to alleviate your symptoms and give you more energy.

Join Support Groups to learn and help each other

Use the internet to reach out to like-minded people on social media or chat groups.  You can talk to more people on Facebook or other social media from around the world who have recovered from myasthenia gravis.  You can talk to more Myasthenia Gravis Doctors both locally and overseas, and join many Myasthenia Gravis support groups to share your experiences and learn from others.

Spend your down days resting in bed, studying up on Myasthenia Gravis. Listen on YouTube or TikTok on how other Myasthenia Gravis patients cope, what supplements may or may not work.  Google “how to reverse diabetes naturally”, or “pros and cons of thymectomy surgery”, etc.

When work is too tough to manage, what can you do?

If you are facing financial problems and can no longer go out to work, you can try asking around for a work-from-home job. There are some jobs that can be done 8 hours a day over the handphone, while resting in your bed. You can also reach out to people over Facebook or other social media, explain your situation and if you try hard enough and speak positively you may find someone willing to help you to find a part time job online.

If you are too tired even in bed to work, there are supplements you can try, some are listed here that may energise, help clear brain fog and even reverse Myasthenia Gravis to a certain degree. 

When it seems your family is abandoning you, changing your mindset & adopting new habits and a new outlook in life can help you cope

If you are struggling with family members who do not want to help you, there are many ancient wisdom books, study groups and social media that teaches people how to change yourself so people will be more willing to treat you better. Try not to keep blaming others for what is happening, instead use your energy to learn how to change yourself. 

Keep learning, keep seeking answers

For thousands of years, knowledge has been passed down from generation to generation and from one culture to another on how to handle difficulties we all face in life, like health problems, relationship problems, money problems and more. 

Learn the power of "I do not know", learn how to learn, keep learning and changing everyday.  Practise to think, speak, and do positive, how to adopt the right view, mindfulness, focus, concentration and effort.  Understand the power of giving, gratitude and collaboration. 

There are many free professional organisations that have been helping people to get out of crisis, reduce suffering and even turn bad experiences into positive and enjoyable ones. You can join many of these different organisations that teach very powerful ancient wisdom till most of your problems are reduced.  Take the time to find the few organisations, systems, or books that are suitable for you.  

Once we are able to change your outlook in life and enlightened, it will be so much easier to see the many powerful and easy healing healthy habits that are free, and right in front of us that we do not use.  Such simple but powerful habits like deep breathing, proper sleep, reduce stress, not overeating, eating a simple balanced delicious meal, smiling, walking and swinging our arms, reducing stress, getting proper sleep, resting and many more that are usually under-appreciated. 

Learn what those old bad habits that caused us so much suffering were, and let it go. Develop new enjoyable good habits. 

So long as we do not give up, keep learning, and work to change ourselves and our habits, the possibilities can be amazing. 

Focus on the 100,000 things you can still do despite the Myasthenia Gravis, not the 1,000 things you can’t do because of Myasthenia Gravis

It usually takes many years to learn and test what works for you. Even after 20 years you can still learn new things. There are people who live an even better life after Myasthenia Gravis. There are people who had severe Myasthenia Gravis with intubation and have recovered, in remission without medication, by adopting the correct healthy habits and mindfulness. 

You may not be able to run an ultra marathon or a full Ironman but there are those who can run a decent 5km, walk 20km at 55years old when many non Myasthenia Gravis people cannot even run 1km. There are also Myasthenia Gravis patients with better strength and better eyesight than non Myasthenia Gravis patients. You may experience many different kinds of health issues when you are at the bottom with Myasthenia Gravis, but all of these problems may go away once you slowly learn how to heal your body mindfully. 

The key is to keep learning and asking.

People are also more likely to help us if we are nice and polite.

If you have learned a habit that works for you, do share. Every time you share, you will also be reminding yourself in the future not to forget to practise it. 

Breathe deeply, don't stress, get proper sleep and rest. Develop correct healthy habits. Keep Learning. 

Think, speak and do positive. 

Practise deep mindfulness daily. 

Ancient wisdom passed down for  thousands of years have indicated a few important things we must do to try and reduce our suffering to to start enjoying ourselves more:

1. Have the correct world view of things and information

2. Enough concentration

3. Must put in enough effort

4. Must have the correct livelyhood

5. Right intention

6. Right action

7. Right speech 

8. Right mind setting

9. Think, speak, do positive

10. Non judgemental, non self righteous 

11. Giving

12. Gratitude 

13. Collaboration 

14. Lean how to learn 

15. Practice that power of I know I  do not know and silence

16. Deep breathing

17. Good sleep 

18. Reduce stress

19. Give up superficial persuade 

20. Give happiness to others

21. Understand the power of reap what you sow and use it to help you heal

22. Practice kindness giving and compassion 

The best solutions can be right in front of us like deep breathing yet most cannot use it effectively and put it as first priority in our life. Ancient wisdom have taught us to start practicing kindness, compassing and giving and observe if this changes. When we practise more positive giving our ego clams down and we will then have the ability to control what we do more effectively. 

If you want to lead even a better life there are many organization around the world that share about ancient wisdom, health and happiness. Try as many of them till you find a few that you feel you can benefit from. Uovu.com is one of them. You can start with learning and volunteering with them and see if it fits what you are looking for. If not move on and try others. It is very hard to do it on your own. It us much easier to join a community that practice health and happiness together. 

These are not professional or medical advice and information may not be correct. Please do your own research and check with your Doctors.

WE ARE STILL GATHERING INFORMATION AND LEARNING, SOME DAY WE HOPE TO PUBLISH A MYASTHENIA GRAVIS BOOK.