My story of how I got here with Myasthenia Gravis

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Good Evening Everyone, I wanted to share my story of how I got here with Myasthenia Gravis.

 

My name is Reuben Christopher Haynes, I am 49 and I am a native Texan.  I am the oldest of four children and I have lived one my own since 1990, mainly in the Chicago area.  I moved here mainly for music.  But, I started my own Technology Consulting Business so I have travelled around the world. From 1998 to 2007, I was a road warrior and enjoyed my life.  I had always prided myself with not getting sick or ill.  If anything would start I would briefly change my diet and stop a cold or any congestion from starting.  The last time I was “sick” was on the early 1980s.

 

I did not have a Primary Care Doctor and I never even went to a dentist!  In 1996, I twisted my ankle and in 2010, I slipped on black ice and busted gash on the back of my head.  All that I recovered from.

 

The only thing “WRONG” with me or what I have been beaten over the head with is that I have very heavy, or MORBIDLY OBESE.  I would go get checkups and everything was normal and I was heathy despite being fat.

 

Being fat is the last true prejudice. I swear that I am treated worse that I pedophile and mocked behind my back as being very sick, even though I was not.  That aspect of my life has been very painful so I spend most of my time in isolation, as no one want to have a relationship with me and to be laugh at for even considering such a situation as an impossibility.  Mind you in my work and wherever I go I am not a loner and I am a very happy and helpful person as everyone calls me a nice guy and with a smile on my face all the time.  I especially do we with kids and in helping other with this questions and problems.  Of course I always hoped that my kindness would in one day be rewarded with a relationship of my own.

 

So in October of 2014, I was resting in bed and I felt something fall inside my mouth.  Pieces of teeth! I freaked out and decided to go to a dentist for the first time.  However, it was not teeth it was plaque.  So I had my first dental cleaning and confirmed with a handshake from the dentist that I did not have one single cavity!

 

I was happy, so I took the next several weeks off and decided to go back to my love of music and play the (French) Horn again.  I started playing again in 2015 and was very happy preforming and working.

 

This all changed on May 27, 2015, I woke up with severe pain and weakness in my right hand and fingers.  I immediately went to see my doctor and try to figure out what was the cause of this. It soon spread to my left hand pinky and various other locations on my arms, back, neck and head.  I had multiple tests performed but no conclusive answers.  The doctors argued over Carpel Tunnel Syndrome or a pinched Ulnar Nerve.

 

I was not satisfied with any diagnosis.  So, I basically, took myself out of the equation and did not carry or lift anything heavy and made minor lifestyle adjustments to avoid (what I thought at the time was) further nerve damage.  However, late in the Summer of 2015 the condition worsened.   It has been very debilitating. I have been on the decline with moments free discomfort by basically not using movements to exacerbate the issue with cold weather making matter worse. However, the changes I made to my life soon turned things around and I was took better and managing everything.

 

The doctors wanted to perform surgery and I was against this.  They did not know with this was! I was not sure.  My world began to unravel.

 

So many tests, MRIs, CT Scan, Nerve Tests, Sleep Studies, etc. Everything was piling up! No one was there to support me and everyone began to talk behind my back.  Saying in was weight related so I received no sympathy from anyone.  I hid my illness from my work and clients for fear of losing their business.  Even to this day I am struggling with this.

 

So from the Fall of 2015 to the Summer of 2016, I basically took note and did not do anything that would cause me any discomfort or pain.

 

I became more sheltered by continued to work and to perform as the latter brought me joy.

 

Financially, things got tough and I moved it to a smaller place that only brought pain. But I started to concentrate on getting my life back and for me to talk control.

 

However, that all changed on July 13, 2016, I noticed at the end of band rehearsal that I could not play any high notes on my instrument and need to take frequent breaks. Which was very unusual.  Again on July 20th , it was much worse. After the first part of the rehearsal I need to stop frequently and I felt as though someone had punched me in the face with very sore muscles.  I wanted to go home and sleep.  But stayed.  However, things have turned for the worst on Friday - July 22nd and then I have been in the hospital. Unable to speak and eat properly with my entire mouth no longer functioning properly. 

 

I had breakfast in the morning and suddenly, I could not eat my food and my tongue stopped functioning and I was in danger of choking. I left the restaurant and went to work. I went to all my meetings and was getting a little tired as it was near the end of the day and I was in the middle of a presentation when I start to slur my speech and the more I fought it the worse it got.  I said, “I think I am having a seizure” and promptly excused myself and went home.

 

I spent the entire weekend in my room.  Silent.  Not speaking a word and drinking my food and eating with the possibility of choking to death is not on my list of things to do.

 

So I remained silent and do not do anything for over four days – including not eating (chewing food).

 

I then started slowing doing things again.  I could speak clearly for a less than an hour before my speech starts to slur and slow down.  I could no longer function.

 

I knew I had to go to the Emergency Room, I just did not know what to do.  I could barely talk and I could not stop wondering what is next?   I was sitting there staring at nothing.  I knew what I had to do, despite not wanting to do it.  Unsure of what is next.  So after nearly 14 months of medical issues and avoidance of anything to aggravate my nerves. My illness is now affecting my life and well-being beyond measure. I cannot go on with my life without speaking for functioning normally. It was heartbreaking.  I went into the hospital and waited.

 

The good news is that I finally have a diagnosis Myasthenia Gravis. 

 

I have also have begun to search for options for returning to normal life and see what can be done of anything.  I need to think creatively with new techniques. On living with the lowest amount of muscle tension and pressure.  I have very sore facial muscles.  I am researching natural remedies as well as I hope I can avoid complete muscle failure, which is fatal.  Hopefully there is something out there that can help me live a full life.  I know I am going to do all I can to make that happen.

 

Since July 28th, I have been on Pyridostigmine (60 mg – three times a day.

 

On October 4th, I moved into a new condo in Roselle, Illinois.  It has been a struggle as everything that requires muscle effort is extremely debilitating.  I am not here and completely alone. No one outside of work is speaking with me and I had to place my horn playing on hold – since July 22nd.  So I spend my time alone working or reading.  I do have some fear that something might go wrong but I just do not know what to do.

 

How could this get any worse?

 

Well then, on October 18th I have I started to notice that my vision is going and I am starting to have double vision at night or after reading or on the computer after a long day.  So I had to increase to having the medication (Pyridostigmine) 5 to 6 times a day and over the last few days my body and especially my face have been very fatigued as if I have I been beating up and left to die.

 

Since I live alone so I purchased a Medical ID bracelet and do not go anywhere without my phone (medical information) if I have a crisis.  So as of this writing things are not looking good, but I am doing all that I can do and I can live with the fact that I am doing all that is the best of myself at this time.

 

This is who I am and what my situation is.  I am in the process of researching and looking up frantically (before I can no longer see – if that is the case) anything to reverse the Myasthenia Gravis.  For me increasing the medication is just not the only thing I want to do.  I want to think out of the box!

 

I want to see what else is out there, to change my diet and to figure out what exercise I can do to improve and get my life back in control.

 

It is now March 11, 2017, I just turned 49 and I have been doing all I can to improve my health and living with Myasthenia Gravis.  I completed a physical and I am following up on my MRI results this Monday as I am still a bit worried.  I am continuing to take my Pyridostigmine (60 mg – three times a day and I have started to take Vitamin D 10,000 iu three times a day.

 

I just want this nightmare to end.

 

Thank you all for your time, I will be accepting friend requests and remember I am here for you as well.