Real Life Stories about Myositis Print E-mail

A rare case of myasthenia gravis, polymyositis, and thymus tumor (giant cell myositis)

 

It was the middle of June, 1999. I woke up with a headache—which was unusual, because I didn’t normally get headaches. I didn’t have a fever, but my muscles felt sore and I had very little energy. I figured if I rested a few days I would regain my stamina. That didn’t happen. Each day I felt worse.

After about a week, my wife, Joyce, drove me to our family doctor. He immediately had me admitted to a hospital. I had been there two days when it was concluded that I had experienced a stroke. Joyce and I politely disagreed. OK, we weren’t very polite.

After that brouhaha, Dr. Gus Noureddine, who was not directly involved in diagnosing my case, said that he would refer me to a neurologist named Dr. Aziz Shaibani. We readily agreed.

At St. Luke’s, Dr. Shaibani came to examine me. I told him how my weakness and exhaustion had come upon me suddenly. I showed him that I could not stand on tiptoe. He listened to my nasal “Donald Duck” (Joyce’s term) voice, and then he poured me some cold water and had me slowly sip it. My voice came back to normal. He said that he was pretty sure that I had Myasthenia Gravis, but that he wanted to run some confirmation tests. He checked me out of the hospital because he knew no tests would be done over the Fourth of July weekend.

After a long weekend of worrying and conjecture, the tests began. They indicated Myasthenia Gravis. A scan showed that I had an enlarged thymus gland. It had to go. Dr. Shaibani gave me a muscle biopsy, which indicated that I also had Polymyositus. He prescribed Mestinon to be taken before meals so that I could chew and swallow. He also prescribed a high dosage of Prednisone to build up my strength for a thymectomy.

On September 17, 1999, I was lying on a gurney at St. Luke’s waiting to enter the operating room. One of the anesthesiologists asked me how I was doing. I said, “I’d rather be fishing, and I don’t even like to fish!” I don’t remember anything between there and waking up in the recovery room.

Thanks to Dr. George J. Reul, and many others, the operation was a success. In fact, it was so successful that the doctors at a radiation clinic decided that I didn’t need radiation therapy.

After the operation, I received IVIG treatments, along with Prednisone, Imuran, and other medicine. In a few months I was actually able to get on my tractor and drive it. In fact, through Dr. Shaibani’s association with Channel 11 in Houston, I was shown on TV driving the tractor!

I now take only the minimum doses of medicine that Dr. Shaibani thinks I need. I feel pretty good, have good strength, and can do most of the things that I used to do.

Joyce and I owe a great debt of thanks to Dr. Shaibani and all his staff. We shall forever be grateful.


Inclusion Body Myositis & IVIg Treatment


Date of Diagnoses: April 2000

Male - Present Age 54


I have Inclusion Body Myositis (IBM) and was diagnosed approximately April 2000. I had the usual muscle biopsy and all the other tests that are required to make an accurate diagnosis. I am 54 years old now.

 

I have been a small businessman since 1977. At that time I was a one-man operation and slowly grew into a small 7-employee company.  My oldest son came to work with me about 1982 and took over the service operation of the company; I did outside sales and general manager work.  They say that stress may trigger IBM but that is a guess at best.

 

In 1980 my wife and I bought our first home in Houston and that was a happy event to say the least.  About two weeks after we moved into our home we learned my wife had terminal liver disease which was fatal within five years.  If stress could induce IBM then that is the period it happened.

 

It was not until 1999 that I started to think things were changing in me. I remember one day on the job that I had to walk up two flights of stairs.  When I reached the top, my legs were on fire to the point I lost feeling in them. I sat down for a short time and all was ok again.  Then one morning I was blow-drying my hair when I could not finish. I could not lift my arms over my head much less keep them there drying my hair. I knew at that point I had a serious problem of some kind.

 

I made an appointment with my doctor that week and told him what had happened. I told him that something was wrong inside. He agreed.  After an hour and half and dozens of tests later, I returned home. I returned the next week, telling him that things were no better.  After another set of testing, he thought the problem was neuromuscular.  He helped to get me in to see Dr. Aziz Shaibani at the Nerve & Muscle Center of Texas.

 

I was surprised that Dr. Shaibani did many of the same tests that had been done previously. Dr. Shaibani told me that we still needed to do more testing the following week.  He told me I could have one of two diseases and needed to do a muscle biopsy to determine for sure which one was the problem.

 

I planned to take an hour from work so he could do the biopsy in his office.  As he was cutting into my leg to get muscle tissues for pathology studying, he informed me that I would be in bed for a week and would need some pain medication.  The following week, he told my wife, two sons and my daughter-in-law and me that I had Inclusion Body Myositis (IBM).

 

Dr. Aziz Shaibani started me on IVIg a week after the biopsy diagnosis.  I called my health insurance company - Blue Cross-Blue Shield - and they gave a six month treatment of IVIg.  Receiving the news from the insurance company and I thought everything was all right.

 

At that time, I did not know about the problems associated with IBM or IVIg.  I had no idea of the cost and no one had told me of the costs involved in the treatment.  Well, after five treatments one week and two treatments a month, the insurance company turned down all claims saying it was not medically necessary.  I guess they think I can keep falling down.

 

I was told by Dr. Shaibani I was the first patient he’s found with IBM before the disease had destroyed the muscles and was in hopes to slow it or stop IBM so I could live with it without losing my job; that I might be able to stay out of a wheel chair for several years to come.


I still have strength in my legs, able to walk and should continue for sometime.  The disease is slowly doing its thing, but I am happy I am doing as well as I am.

Houston, TX


Inclusion Body Myositis & IVIg #2 Story


Diagnosed 1999

Female - Present Age 69


I am a while female, age 69 years of age.  I was diagnosed with IBM in 1999.

 

About the middle of the ‘90s, I began to notice a weakness in my thighs.  I began having trouble getting up out of chairs.  I had to use my arms to push myself up, then I began to fall, would just be walking and suddenly I was on the floor or the ground.  I fell more inside the home.

 

I learned to compensate, like taking smaller steps, watch for drop of foot or uneven, low places, not to climb stairs without rails to hold onto, wearing walking shoes.

 

I searched several years for a doctor that could help me.  I saw six or more doctors who had no idea what was causing the problems I had.

 

Finally, I talked my family doctor into doing a MRI on my spine to see if that was my problem.  The doctor seemed to think I had a bad disc, so I saw a surgeon, had CAT scan dye test and the works, but my back was not the problem.

 

The surgeon sent me to see Dr. Aziz Shaibani at the Houston Neuro Clinic, 6624 Fannin Street, Suite 1670, Houston, TX 77230.

 

He did a biopsy in December 1999 and found I had Inclusion Body Myositis (IBM).  I began immune globin injections (IVIg) February 29, 2000.

 

I know it has helped me because I am now much stronger.  I have not fallen in two months, get up from chairs with less problems, walk up stairs.  I now can walk 3-4 miles five days each week and ride my bicycle.

 

I have no pain, do not walk using a walker or cane. I am so blessed.

 

I am a nurse and I still work part time as a substitute at our schools and also sub for the nurses at an allergy clinic.

 

We made a 1,500 mile May 2, 2000 and I drove every mile.

Richwood, TX

Reprinted from “Coping with a Myositis Disease” book, with permission by the Kilpatrick Publishing Co

 
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