Myasthenia Gravis- My story

by G. W. Schroeder - Date: 2007-01-16 - Word Count: 2780 Share This!

On Sunday AM Nov. 5th, 2006-a beautiful clear day, as I was driving to church it was as if I suddenly drove into a downpour. My windshield appeared flooded, my eyesight had blurred so badly that the road and traffic were barely distinguishable. I turned slowly around and made it home. The blurring stopped later that day but I had double vision and I wondered "What was that all about".

On Monday morning on my 2 mile walk (another clear day) I looked up at the full moon settling in the western sky and distinctly saw two moons.(2 moons apart) and my right eyelid was droopy. When I got home I called my cardiologist office to report it and Dr. Estes returned my call a short while later and told me to "Get in here, right now".

At first glance, when I arrived there he said "you look like you have had a stroke", and immediately ordered an E.K.G. The E.K.G did not indicate a stroke so he ordered A M.R.I. which I had that same day. The M.R.I. did not indicate one either so he arranged for me to see a Neurologist (Dr. Ken Jordan) but the appointment was not for 2 weeks.

The next morning I went into tell my supervisor (Rosie) at CRYROP that I would probably not be working for a while and as we were talking my speech totally failed. she panicked and called an ambulance. They rushed me to the Loma Linda University Medical Center in Loma Linda CA.

L.L.U.M.C. There was a very quick response to receive me there. I don't think the diagnostic testing in the emergency room could have been better. I was impressed with their every move. My bedside was buzzing with activity. Dozens of doctors, nurses, aides, therapists, and technicians had become involved. Before it was all over I had blood samples, X-rays, I.V's, scans and vital organ checks. Then there were dozens of questions which I answered on a clip-board with a pencil because I could not speak.

One of the tests was an injection (I.V.) of a mixture of a saline solution and Mestinon which was supposed to correct the droopy eyelid. It did briefly and that gave them their clue. They made me feel very special.

When it was finally over, they concluded that it was "Myasthenia Gravis" and gave me the phone # of a neurologist to call to schedule a recovery program. Then they released me.

By now my speech would come and go and my swallowing was growing more difficult.

I called the number and got a recording that told me that they would call back in 48 hours. My situation was approaching 'melt-down', my speech, swallowing and vision were all severely impaired. I could not deal with A long wait and decided that the 1 1/2 week wait remaining to see Dr. Jordan would probably be the best choice.

Redlands Community Hospital The next day another attack occurred. I was taken by ambulance to Redlands Community Hospital. There I waited about 20 minutes or so before I was pushed into a station. Then A male nurse recorded my vitals and prepared me for an I.V. I waited A long time and would ask every nurse or aide that passed by when help was coming and I was told "Soon".I had the feeling that they thought that I was some kind of "Nut Case" I think I waited about 2 hours before I was told that I had Conjunctivitis (Pink-eye) and was going to be released. I had no ride, I could barely talk, I had difficulty swallowing and I had very little money on me but they called a cab and told me to go, Redlands Community Hospital reminded me of a huge abandoned warehouse, with A few speculators "casing" it for possible use.

Back to S.B.M.G. As the day progressed the condition worsened and my friends across the street from my home came to my rescue. They took me to the San Bernardino Medical Group to see my Cardiologist. (Dr. Estes). When he saw my condition he arranged with my Primary Physician (DR. Awan) to admit me to St. Bernardine Hospital Emergency for treatment. Dr. Awan prescribed Mestinon (as directed by the neurologists office) to partially contain it and I was released. During this time my speech was slurred, my eye-sight impaired and my swallowing restricted but I managed to get by. It was a long wait to my appointment day with Dr. Jordan on Nov. 27, 2006.

My three main areas of concern were swallowing, speech and vision and the Mestinon partially restored the functions in those areas during that wait, which was a whole lot better than being totally dysfunctional and it was during that period that I really became acquainted with the "Monster". It never, ever let me forget that it was in control.

Swallowing: It often took two or three or more attempts to swallow a small bit of saliva (because I could not spit) and at other times it might be easier. Then I discovered "Boost Plus", A very delicious, nutritious and easy to swallow food product. I sustained me for a couple of weeks.

Speech: Once in a while, I would start out speaking clearly and in the middle of a sentence, then my speech would cut off again and I would need to finish with A pencil, paper and clipboard. I carried these with me at all times and have A stack of notes that I wrote on them.

Vision: Before the attack, I spent hours on the computer each day. I designed 3 web-sites and used the Internet to gather information for various educational projects but for 3 or 4 weeks after the attack I didn't turn the computer on at all. There was no use, I couldn't see the monitor clearly enough and I had trouble focusing on even the simplest projects. I had great difficulty managing with one eye but there were some chores that I could not avoid, there was no one else to do it:

Going to the store-The only things I needed were "Boost Plus", soups, paper towels,

tissues and bathroom items but they were essential.

The Post Office-I still used the Post Office for all my 'important' mail.

The pharmacy-for prescriptions and other support items CVS pharmacy proved to

be everything they claimed to be in their T.V. commercials and I relied on them A lot.

So I would put A patch over my right eye, slip on A pair of dark glasses and drive very, very carefully to my destinations.

The rest of the time I stayed confined as much as I could. My 15 year-old son and his mother came to visit me about once A week but I felt so much like A freak that I felt as uncomfortable with them as I would have with A stranger.

I also discovered something else, I had so much gas build up inside of me that I always felt bloated and that may be why I never felt hungry even though I ate very little. (I had lost 21 pounds in 40 days). I never realized before how precious those sneaky little burps were until I couldn't do it for several weeks. A therapist at the hospital told me to try a carbonated drink so one day I did and VIOILA! I had to rush to the bathroom and got rid of a months supply of gas-from both ends. It was heavenly and my appetite returned.

And then the big day came-my appointment with Dr. Jordan. I expected A lot and got A lot more than I expected.

Nov. 27, 2006- Dr. Jordan I was taken by the receptionist to the room where Dr. Jordan would see me. He was a very busy man.I waited about 15 minutes, then he stuck his head in the door and said that he had an emergency and would be with me soon. About ten minutes later he stuck his head in the door again and said that he had another emergency and it would be a few more minutes and he added "But, I know what your problem is and we are going to fix it"

I said "Good, take care of your emergency".

Finally, he came with a clip-board and a stack of papers (records of all of my accumulated tests). It was obvious that he had reviewed all the test data already gathered, very well.

He began with "The consensus is that you have 'Myasthenia Gravis' and I tend to agree but first we need to admit you to St. Bernardines Hospital for further diagnostic testing. It will take six or seven days. You will be getting an I.V. of Intravenous Immune Globulin for 5 days for down regulation of anti-bodies directed against AChR and the introduction of Anti-idiotype Anti-bodies". (All to improve the effects of the medication that would follow).

St. Bernadines Hospital-Diagnostic Testing: He admitted me that day and the testing began The diagnostic testing at St. Bernardines must rank at the top. It was precision and so was Dr. Jordans plan. There were many blood samples taken, several X-rays, E.K.G., Catscan and Sonogram and then my doctor wanted to do an Iodine scan. I had had one many years earlier to locate a kidney stone and it nearly tore me up. I thought it was the end. Some years later I was visiting a friend in the hospital who was in A room with an elderly gentleman that was in for his annual check-up.

He had just returned from an Iodine scan and his doctor told him that he was in 'Top shape'. He was very talkative and jovial and as we were talking he began writhing and gasping. He was having a massive heart attack. I have always believed that the Iodine scan caused it. It scared me to think of having one but I told Dr. Jordan that if he needed it, I would do it. He decided that he could do as well with A MRI, and I was happy about that.

About the second day in the hospital I was the sickest that I could ever remember being in my entire life and it was not my teams fault.I wrote the 3 doctors A note telling them how much I appreciated what they were doing but I did not tell them that I was losing hope. The monster literally had a choke-hold on me and was tightening it's grip. I wrote my 15 year-old son and his mother A note advising them how to handle my meager estate and then told God "If you want me to make the transition now, I am ready". And I put it to rest.

It must have been about the same time that the medications kicked in because the next day I began to gain new hope and from that point on I thanked God for the progress that was being made and the testing went on.

On the 7th. day the testing was finished and I was released to go home. The tests had proven that I had "Acute Myasthenia Gravis" and the recovery plan had been drafted. I would be carrying it out myself at home.

Then I messed up--big time. There were periods of time when, without provocation, I would begin salivating profusely. When that happened my upper denture would come loose and drop. I never wanted to be seen like that so in order to avoid it I purchased a popular brand of adhesive to keep it in place. This brand had for many years helped millions of people to look and feel better so my ensuing problem was not a product failure but my mis-use of the product. Two or three times A day I would need to add it to my denture to keep it in place. What I did not realize was that part of it was disolving and coating the inner lining of my throat and because of A constant need to swallow. (My uvula was dangling so far down that it was touching my tongue and that caused the sensation that there was something there to swallow. Then swallowing forced the disolved adhesive to enter and coat the lining of my throat. It got so bad that I could not swallow at all. When I figured out what was happening I got down over a toilet stool and tried to force it out. For the first 5 minutes A pink substance oozed out (the adhesive) and for the next 15 minutes phlegm and mucous oozed out. There was no vomiting. By then my throat was raw and swollen shut and the attack that followed was grotesque. My mouth gaped wide open, I could not close it. My tongue grew stiff and paralized. I salivated profusely and could not spit it out or swallow it. I had to stuff paper towels in my mouth to absorb the saliva.This lasted for about 5 or 6 minutes and then subsided.

I went across the street and asked my neighbor (by writing on a clip-board) to come over to my place and call my doctor. My doctor quickly called back and told me to meet him at ST. Bernadines Emergency admissions. There they immediately gave me two shots, one to reduce the throat swelling and the other was the medication that I usually took orally but could not now. Then told me to sit down and wait till I could sip water. About an hour later I could sip water so my doctor was called. He came quickly.

The doctor recommended that I be admitted to a convalescent hospital until I could manage on my own.

The Conv. Hospital: I will not mention the name of the hospital because it is a dark chapter in my whole experience but I will say this:

Each day that I was there I grew weaker and more despondent. I did not get one single 3-hour stretch of rest or sleep while I was there. On the night shift, the staff had plenty of 'canoes' (staff) but a critical shortage of 'oars'. (direction) For the staff, it sounded like a "Happy Hour" was in progress all night long.

Only one amusing incident occurred the 7 days that I was there:

One evening a rather attractive nurse with A stethescope came to my bedside and asked "Are you Gerald Schroeder"? I said "Yes". She said "I am your nurse and I am here to take your vitals". I said "OK". She then asked "Do you walk to the bathroom"? I said "Yes". She took a note pad out of her pocket, wrote "Yes" on it and left. (End of vital statistic check) That was sort of the way the whole operation went.

On the 7th. day I had an appointment to see Dr. Jordan. I asked him to release me from the confinement. I told him that I could do much better on my own and he agreed. He released me that day. It was the 13th. of December. I got home about 4:30 P.M. The first 16 hours at home I slept 10 1/2 hours Only interrupted to take my dosages. It was so quiet that it was heavenly. I could quickly fall asleep anywhere I rested my head. I was all alone for the time being and loving it. The positive changes from that time on were dramatic.(Prednisone had been added to my medication).

Christmas Day 12 days after my release from the con-hospital was Christmas. What a glorious day! I was back on the planet, I started to feel whole again. I could sip (through a straw), I could spit, chew, swallow talk, watch 2 hours of newscasts plus "Jeopardy" with-out split vision or droopy eyelids and I could read my e-mail without glasses.I was alone most of the day and did not mind it at all. All the new gifts that I had received from God made it one of my best Christmases ever.

Dec. 26, 2006 I had my second post-hospital appointment with Dr. Jordan. He was happy with our results and he had good news. He said that after six months of treatment M.G. usually goes into remission and that dosages could be cut back. (I had originally been told it would take 6 to 8 months to get it under control).

I feel right at this moment (56 days after the initial attack) that I am 2/3 of the way to total recovery.

I have a marvelous team of 4 on my side, my Primary Physician, my Cardiologist, my Neurologist and God.

The progress that I am making now is predictable and steady. I am expecting the best (God willing, of course) and I hope that I can help to encourage and inspire others that may be facing similar crises in their lives.


Related Tags: monster, sinister, grotesque, debilitating, neurological

Myasthenia-Gravis-My-Story A victims first hand report of his battle with a sinister, grotesque, debilitating neurological monster. Certain to encourage and inspire other victims in A similar crises and their loved ones. For a scientific medical summary of this rare disease, it is recommended that you log on to: Myasthenia Gravis-My story By G. W. Schroeder

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