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Polymyositis ~ Rare Muscle Disease in the Myositis Family

invisable gif POLYMYOSITIS: An inflammatory muscle disease that causes varying degrees of decreased muscle power. The disease has a gradual onset and generally begins in the second decade of life. The most common symptom is muscle weakness, usually affecting those muscles that are closest to the trunk of the body (proximal). Eventually, patients have difficulty rising from a sitting position, climbing stairs, lifting objects, or reaching overhead. In some cases, distal muscles (those not close to the trunk of the body) may also be affected later in the course of the disease. Trouble with swallowing (dysphagia) may occur. Patients may also feel fatigue and feel discomfort and have weight loss or a low-grade fever. Polymyositis is a chronic illness, which means it is not likely to go away.

Nov. 1998

In the hopes of helping others that might find themselves in the same situation as I did, I would like to tell you a little bit about myself and what I have gone through. My name is Vicki, I'm single, 53 years young and live on 5 acres in southern California. My family consists of my daughter, son-in-law and three granddaughters, as well as 5 Arabian horses and 3 mutt dogs.

I had never heard of POLYMYOSITIS until I was diagnosed with it in October 1998. I started to experience weakness and burning in my muscle as early as 1990. At the time I was an avid work out individual and lifted weights to keep fit. My family doctor felt I had Chronic Fatigue syndrome.

The fatigue and muscle burning continued and in 1995 I noticed a lot more weakness in my legs and trouble catching my breath. I went to my primary doctor at which time he ordered an x-ray and I also had a sonogram of my heart. During that time, I was having a problem with my heart racing and skipped beats. Later this was diagnosed as having a bad heart valve and I was put on a drug called Lopressor. Lopressor is used to lower blood pressure, but is also used to regulate the heart valve. My normal blood pressure, at the time, was 85/60. Taking this drug lowered my blood pressure more making me very tired on top of my weakness.

As the years went by my symptoms became worse and the weakness was more pronounced. In early 1997 my hands became painful. I was sent to rehabilitation for Carpal tunnel syndrome treatment. I tried many times to ask questions and after awhile was immediately told that I was the patient and he was the doctor and HE would ask all the questions.

In December of 1997, my symptoms had now become very severe. I found it extremely difficult to breathe doing very simple tasks like getting dressed or brushing my teeth but I passed this off as part of a flu bug going around. I started stumbling and falling and although I had never considered myself old, I thought maybe old age might be catching up with me. I had seen my family doctor many times about my breathing and his end diagnosis was..."It's just your age and you'll have to learn to live with it."

Finally, in May of 1998 I made another appointment with my Family practitioner. The doctor, after a blood test and an x-ray, informed me that all my problems were due to a crushed disk in my neck. As the days went by I steadily weakened and it became much harder to breath. My arms and shoulders became very painful to move. I had feelings of electrical shocks running down my arm muscles and at times I was unable to touch my own skin. My hands ached and I had trouble using them. I had trouble sitting down and then getting back up. I couldn't climb stairs and would have to stop and catch my breath after walking just 10 feet. Vomiting and running a fever at night was a daily event and and every part of my body was swollen to twice it's normal size. My feet, legs and hands became huge. While I was eating very little I still continued to put on weight. My doctor referred me to one surgeon who told me nothing was wrong with my neck. I went to another surgeon who said he wanted to put me in physical therapy for a period of 2 yrs then reevaluate me at the end of that period.

I went to Urgent Care twice. The first time I was informed since it had been an on going problem I needed to see my primary. I was getting sicker and weaker by the day now. I tried to get in to see my doctor again and was told I would have to wait another 6 weeks for an appointment. I went back to Urgent Care again. It was on this visit I finally got some information. I saw a doctor who was very kind and after hours of waiting told me he suspected a Connective Tissue Disease. I was informed that I had very little Potassium left in my system and I had abnormal protein counts, and had a lot of protein and blood in my urine. He wanted to put me in the hospital but since it was up to my primary he would have to call him. My primary apparently said NO. I have surmised this because the look on the doctors face and the fact that the doctor said I would have to go see my primary the following day. Before I left Urgent Care that night the doctor took me aside and told me to call 911 if I got chills in the middle of the night.

The next day my primary informed me that the Urgent Care doctor was way out in left field on his diagnoses and all I had was an allergy.

During my visits with these various doctors I was given a variety of reasons of what could be causing these symptoms (that were all in my head), see if any of them sound familiar to you:

1. Maybe you're just going through the change.
2. You're just under a lot of stress.
3. Did you have a fight with your husband?
4. It could have been something you ate.
5. You must have picked up a little bug.
6. I think you just have an allergy.

After putting up with this for 6 months and hearing it was all in my head I decided it was time to find someone who would listen to me and not patronize me. After asking for a transfer and being without insurance for two weeks I started seeing my new primary who is an Internal Medicine doctor at Scripps Clinic.

It didn't take Scripps very long to see that I was very sick and barely able to breathe. After looking at the x-rays they had taken, and ambulance was immediately ordered to take me to Green Hospital in La Jolla, Ca. This is where Miss Poly and I officially met.

I stayed in the hospital from Oct 1st, 98 to Oct 14th, 98. In 11 days I had lost a total of 51 lbs and found a skeleton of a body hiden under all that swelling. I was informed that every major organ was swollen twice it's normal size. A muscle biopsy was preformed to confirm what was already suspected. To hear those words "YOU MAY HAVE POLYMYOSITIS" is overwhelming. What is Polymyositis? Who else has this disease? How did I get it? Can it be cured? How long will I live? Will I always have this pain? A million and one questions ran through my mind. I did wonder how long I would have left and to what degree would the quality of my life be. In Nov. 98, I had to return to the hospital for a lung biopsy and Interstitial Lung disease, BOOP and Connective Tissue disease was found. The antibody panel showed I have the Anti-JO-1 antibody which is a marker for lung disease and also tends to be a much harder case to treat.

I continue to do research on Polymyositis and all myositis in the hopes of sharing this information with others. Polymyositis at the moment can not be cured but it can be controlled. With new drugs coming out on the market all the time and the top rate doctors I have at Scripps Clinic, I expect to live a very long life.

In reading the Myositis Forum everyday, posting to it as well, there are individuals who are having similar problems as I once had but they are unable to get help. They don't know where to turn to next. It can be very frightening. It is a shame that our health care system has gone in this direction. This is not to say all health care providers are the same. But the number of uncaring, unsympathetic, irresponsible doctors is growing.

I ask each and every one of you to ask your doctor questions regarding your health. Get copies of your lab reports as soon as you can. Get a copy of your medical record every 6 months and make sure it's correct. If it's not, take it back to the doctor and have him or her correct it. This is your health we're talking about so take your health matters into your own hands. After I ordered my health records from my last health provider I was shocked what I found. False statements, medications that I never took, the doctor stating I was recovering when in fact I was getting worse, falsely stating he recommended sending me to another doctor.

If you keep getting the run around....GO TO SOMEONE ELSE and keep going until you find someone who will listen to you.

If you think you have a form of Myositis, I urge you to contact the Myositis Foundation or the MDA and get some information.

By the way, I did not have a crushed disk in my neck nor did I have a bad heart valve. I had Polymyositis with lung involvement.

Transferring to Scripps Clinic has been a true blessing for me. I hope if this helps even one person then it will make me very happy. Please feel free to email me with any questions. I hope each and every one of you finds that one special, caring doctor who can put you on the right path.

To My Friends Who Took Care Of Me and Who Gave of Themselves ~ You're Forever in my Heart!

A Special Thank You To My Rheumatologist, Dr. Kevin Kempf and Staff For Your Compassion and Understanding.


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