I wrote this article for two reasons:

To help people understand the necessity for taking full responsibility for your health; and
To learn to take seriously and appreciate all that you can about a particular condition, illness, or disorder that you have.

Consequently, we recommend you should:

Have an annual physical,
Know your family history,
Research foods you consume,
Understand the medications you take, how they interact, and what side-effects may impact you,
Analyze your current lifestyle,
Seek as much information from various industry sources and medical professionals.

“Your better understanding of your condition may save your life. ”

— Anonymous

Here are the reasons to follow these suggestions.

Discovering My Illness

In 2008 a neurological ophthalmologist diagnosed me having Myasthenia Gravis (MG) after I experienced a bout of double vision - the condition is usually referred to as Ocular MG. There is no known cause or cure for the disease.

There were different ways to combat the challenge at that time:

Surgery of the thymus (i.e., if enlarged but my thymus wasn't)
Take a medication called prednisone in the short-term,
Couple the prednisone with other immuno-suppressants and acetylcholine, in the long-term.

Consequently, I began a daily regimen of prednisone beginning at 60 mg for about 60 days, then stepped down to 40 mg and remained there. The prednisone solved the double vision, and only two symptoms showed itself during the next six years: a very slightly droopy right eyelid at times and tiredness after 4 to 6 pm. I read about the potential side effects of being on high dosages of prednisone for extended periods. But, I never really thought of researching MG to know more about it: I was busy like we all are living my life.

Because I have had excellent health practically all of my life (e.g., except for six knee surgeries ending with a total knee replacement in 2006). I believed that I would be fine for two reasons:

I was living inside a belief (e.g., from my teens, 20's and 30's) that I was indestructible; and
My physician told me that many people with MG live healthy lives: I perceived myself as having that for my future.

Experiencing New Symptoms

To check-up on my condition, I decided to see a neurologist in February 2014, and he began with stepping down my prednisone dosage until I got to about 7 mg daily. Things began to change during the end of this step-down period because, at the beginning of June, I started experiencing more than the ordinary muscle aches, joint pain, and increased tiredness.

Since these symptoms were gradual and I didn't know the cause. My thinking was that it was related to my hip and sciatica problems, the flu or overwork. I also didn't think it was necessary to report these to my neurologist.

Things Began to Get Serious

I reported for hip surgery in late June 2014, but they rejected me for surgery due to shortness of breath. I was huffing and puffing pretty severely, as though I had run upstairs. Both the surgeon and the anesthesiologist agreed that we would need to reschedule, only after figuring out what was happening to me.

As soon as I was dismissed from my surgery appointment at 11:00 am, we called my neurologist who would see me at 1:30 pm. We had a quick lunch on the way to his office, and I noticed I had to hold my head up with my hand to eat lunch. My neck muscles were weakening with my chin gravitating to my chest. I put my hand under my chin for support.

A physician contemplating what to do next…

My neurologist diagnosed my problem, admitting me to the ICU by 4:30 pm with an "MG Flare-up" or an "MG Crisis." Because I had not researched the MG, I had no idea what that meant or the seriousness of the condition. However, before being admitted to the ICU, I was told by the pulmonary therapist that my lung capacity was tracking at 25% - I knew that wasn't good. It was pretty scary, especially combined with my chin wanting to rest on my chest. I wondered what was next for me!

Combating an MG Crisis

Due to the seriousness of my condition while in the ICU, I was fitted with a jugular catheter. I began a process called plasmapheresis. Also, to help my breathing, I was connected with a Bi-Pap machine. The plasmapheresis procedure takes ten days with five procedure sessions and a day off after each session. I had my blood plasma cleansed by pulling off the lousy plasma, replacing it with good plasma.

The effects of this plasmapheresis process were positive. I no longer experience shortness of breath, and my breathing test showed good progress. I was released from the hospital but experienced another MG Crisis within ten days and returned to the hospital again.

More MG Experiences

I had two more MG Crises, almost back-to-back, both with separate recovery procedures to stabilize me. Those times also included using a process called IVIG coupled with IV chemotherapy, all of which got me out of the crisis and maintained my good health.

As if that wasn't enough stress, I also experienced gall bladder surgery in February 2015. This process started another MG Crisis again with a longer than a typical hospital stay (e.g., usually four days for the operation but an added five more days for the IVIG procedure). My neurologist was aggressive with both the IVIG and IV chemotherapy procedures. I experienced IV chemotherapy in the cancer center as an out-patient and only requires about four to five hours per session - much better than being hospitalized.

All in all, I had three severe crises and the start of a 4th.

Common Symptoms During an MG Crisis

By the end of my third crisis, I had experienced many of the symptoms associated with an MG Crisis.

These symptoms included:

Weakened muscles rotating throughout your body,
Inability to raise your head from the bed or keep it upright while standing or sitting,
Palsied hands unable to grasp and hold onto anything,
Slurred speech but in my case only about a 5% reduction in pronouncing certain words,
Difficulty in swallowing necessitating the eating of soft foods,
Inability to shake someone's hand, shower, standup for more than 5 minutes, and walk, etc.

I believe this would be a challenging experience for anyone, but for me, it was devastating at times, both emotionally and spiritually. If I had spent time learning more about MG, I would have understood the symptoms I was experiencing in the run-up to hip surgery. And perhaps I could have sought help and potentially eliminated the crisis.

Or maybe not, and I will never know for sure.

Current Recovery Status

As of March 2015, I am currently on a stabilizing course of recovery using a series of immune-suppressant medications and chemotherapy treatments to attain remission. I have regained my normal strength, able to do almost everything I could before the crisis. I experience no breathing problems, and I have adjusted to most all the medications now. I am practically free of some of the more severe side effects of nausea, diarrhea, and vomiting (i.e., boy were those tough periods).

Besides, and for those of you that know me, I am back to my usual positive outlook and approach to life. It may take some months before I get back to a regular 40 to 60-hour workweek.

This revitalized status would not have been possible without the recent use of Wellbutrin. As is the case for most MG and chronic pain patients, clinical depression seems to be part of the recovery process.

After much denial and objection on my part, my wife Janet convinced me to seek guidance in this area. I did, and the result was taking this new medication. The medication has gotten me out the gloom, and periods of sustained and high-grumpiness. I stopped being adversely argumentative and swearing for no apparent reason (i.e., I was beginning to wonder if I had Tourette Syndrome). Since my mother was Bi-Polar, I was also concerned that I might even be so afflicted, but thankfully though, that is not the case.

Continued Progress

During this most recent nine-month period, I have been able at times to continue to write and develop products and services for the brand Choice Awareness Management, embodied in the website Choice Awareness and our leading blog site Benninghofen Company.

I started back on working a day two to three days a week, beginning at the end of January 2015. But when I experienced a gall bladder attack necessitating surgery, it set me back until now, where I planned to start the reduced workweek again in April 2015.

Gratitude for Expert Help

A short twenty-five years ago, people died from MG. That is a startling statistic. So I consider myself very fortunate to live in our current times and have present all the medical technology and pharmaceuticals available: I am here today because of it.

I am thankful for all the medical professionals that have participated in my recovery. This recovery process includes all the doctors, nurses, technicians, therapists, et al. that have contributed to me and the information, knowledge, and wisdom they continue to share with Janet and me.

Lessons Learned

Among the many things that I have learned along this recovery path that have touched me, include some of the following suggestions:

Take complete responsibility for your health, accessing as much data as you can. The information, knowledge, and wisdom from all sources available to you - it is enormous while sharing what you learn with your spouse, family, and friends,
Keep asking questions from every one of those sources, until you are sure that you have the most comprehensive alternatives and possibilities available today. Ensure that you understand each consequence of those alternatives,
Discuss all those alternatives with your intimate communities (e.g., spouse, family, friends, colleagues, associates, etc.). Do this until you can come to some set of conclusions and decisions about how to proceed. If it is not immediately life-threatening, sleep on it before choosing,
When you experience symptoms, pain, or anything which concerns you, seek professional assistance from your health team by calling on them. And go to the emergency room ASAP - it may save your life. Don't keep anything about these concerns to yourself; share immediately with them what is occurring.
Establish your special health team. Depending upon your illness or condition, get a primary healthcare physician in which you have absolute trust. Add specialties to your support team (e.g., nutritionist, pain specialist, physical therapist, cardiologist, psychiatrist, pulmonary, physiologist, etc.). Seek their counsel when needed and as often as needed.
Adjust your current lifestyle to accommodate meditation, prayer, stress relief in any available form (e.g., course study and session work, including massage therapy and the healing arts, etc.).
Ensure that you are up-to-date in all your age category recommendations for all treatments, including vaccinations, periodic physical evaluations, etc.
Begin to consider changing your beliefs about your health, aging, exercise, eating, etc.
Regardless of your present circumstances, no matter how moderate, severe, or grave they may be or seem, seek awareness, understanding, and acceptance of the current state of exactly where you at this moment. Visualize how to create, regain, or mitigate the situation and look on today as the only moments available to you. Forget about yesterday because it is already written or tomorrow because you haven't been granted it yet - I invite you not to fool yourself about these points.
Seek spiritual guidance from your Deity or High-Power and pray as often as you can.
Participate in all things humorous to you and learn to laugh at yourself and your circumstances. Find solace in smiling and laughter, then engage and participate with others who seek the same.
Your time on this planet is not yet up. If you are willing to endure the pain and uncertainty of the current day, let your Deity or your Higher-Power be responsible for ending your life. Not you or someone else.
- There were times that I considered this, even prayed for it but recanted after a night's sleep. My condition and illness are nowhere near others more afflicted (i.e., you name it, and someone is always in a worse state). But I have come to realize this is common among suffering of any condition: don't beat yourself up for thinking about it.

Footnote

ProviderTech.com team just published a comprehensive article on "Population Health Management During the COVID-19 Pandemic".
You can check it out here: https://www.providertech.com/population-health-management-during-the-covid-19-pandemic/