It’s rough being diagnosed with a very rare illness, but it is even rougher when you realize that the specialist treating you does not have any real experience, or knowledge in treating your disease. That was my experience when I became severely ill about twenty years ago.

I was a twenty-six years old, and a divorced single mother studying at our local college went it hit me, I went down like a rock. My joints and muscles stiffened. I had difficulty swallowing and breathing. I was so fatigued that some days I had difficulty just sitting at the kitchen table for a few hours. I was dopey, my brain fuzzy and confused, and I could not concentrate on even a simple conversation for any length of time. My hands and feet became very cold sensitive, and the blood flow to them would shut off at the slightest hint of cold, or physical or emotional stress.

Within a month the stiffness was so bad that I could no longer get into the bathtub, rise from a chair, or climb stairs without difficulty. The fatigue and brain fog made studies impossible and I was forced to withdraw from my studies. A diagnosis was made of severe Rheumatoid arthritis, but of course this diagnosis did have a few flaws as it did not explain the swallowing, breathing, confusion and fatigue issues. Two years later it was discovered that I had JO-1 antibodies within my immune system.

JO-1 antibodies are extremely rare, even today there is not a lot of knowledge known about them, and back then there was even less. I was sent to a specialist at the nearest large medical facility to be treated. He said that I would be dead by now if I had a brain tumor, that I should not be having breathing, severe fatigue, or swallowing difficulties, and that he didn’t have a clue what the dopiness was. I was also told that JO-1 antibodies indicated that I had Polymyositis and that steroids or immune suppressants were the method of treatment. He wanted to begin treatment with these right away. During the first two years of my illness I had tried Prednisone treatment, and had found myself extremely agitated on them, so extreme that I had thought that I might suffer a heart attack. I was uncomfortable with either drug treatment and explained to him that I had difficulties using Steroids. He looked directly at me bluntly stated that I just did not want to get well. I was on sick leave insurance at the time, and so naturally felt very threatened by this statement, so I agreed to undergo steroid treatment once again. About three weeks into the treatment the toes on my left foot began to blacken. The blood flow to my feet had stopped, and just as happens in a case of severe frost bite, without blood flow my toes were beginning to die. I was put on Adalat to open the small capillaries within my toes, told to stay off my feet, and to bathe them in salt water throughout the day to prevent gangrene. I was terrified. As the days passed, my center toe begin to die inward, the black slowly creeping deeper into the toe.

By some small miracle the circulation began returning to my feet; but was it too late to save my foot? My steroid prescription ended and I did not renew it. I started massaging the bottoms of my feet morning and night to encourage any blood flow that I possibly could. I continued the salt baths, staying off my feet as much as possible, and the Adalat.

I began seeing a local surgeon every second day waiting for him to make the call as to when to operate. Each visit he would lay the stethescope on my foot, and listen for the blood flow, then nod his head that it was okay for me to leave. My family doctor began to sound like a mother hen, pat your feet dry, never rub them, are you smoking, stay off your feet! The black on my toes began to dry and shrivel. The layers of black peeled off one by one. On my center toe the black pulled up like a cork coming out of a bottle and then the gaping hole slowly closed. I was safe. To this day my general practitioner still says that he is shocked that I did not lose my foot. He said that the very least that he thought that I would lose was two toes.

Now that I was well enough to travel, I was sent to the larger medical center once again, and placed in the hospital there. Here the Specialist who had prescribed the Steroids was to once again treat me. He looked at me and said something to the effect that I certainly looked different. Having gained forty pounds on the Steroids I would hazard a guess that I certainly did. He began prescribing plaquinel. He also hauled me down the hallway one morning to present me in front of a group of medical students. My diagnosis, and recent health difficulties were explained to them, then I was escorted out so they could discuss my condition.

After a week I was sent home. My doctor was sent a note that contained the following information: JO-1 antibodies are a marker for people with Antisynthetase Syndrome. Individuals with this illness generally suffer from polymyositis, multi-arthritis, interstitual lung disease, severe Raynaulds phenomenon, as well as mechanics hands. I have to wonder if this knowledge came from one of those medical students, whatever the case, I refused to see that specialist again. I was to later learn at Myositis.org that brain fog, swallowing, and breathing difficulties are common symptoms for people with myositis.

Since that time I have learned a lot about my illness. I have also learned to research every aspect of my illness, symptoms and treatments, and t to insure that I play a major part in my treatments and therapies. I’ve learned to never be afraid to question a physician. They have the medical knowledge to treat you, but you know your body, and to receive the most beneficial treatment you must work together on your therapies.