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SHIELA

(Submitted 7th June 2006)

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When I was 19 and in my first year of college I developed severe muscle spasms, bouts of vertigo and endocrine problems. My doctor first suspected a calcium deficiency. Wrong! Next he diagnosed me with hypoglycemia, but the suggested eat 5 small meals a day, high protein low carb diet did not solve the problem. Next I developed red butterfly rashes, severe joint and muscle pain, difficulty thinking, deep fatigue and facial charlie horses. A round of doctors gave up on diagnosing me so I tried to make the best of it. I eventually married and had three live births. Each pregnancy was so difficult, 24/7, I don't know how I lived through them. From day one of the pregnancy until I delivered I had severe vascular headaches which made me feel like I had brain tumors. The nausea and vomiting were beyond description and human endurance.

Then I had two pregnancies, still horrific to deal with, but at 4 and one half months along each time I suddenly began hemhorraging and lost the babies. That is when my G.P. started thinking I had a systemic problem. I developed more and more butterfly rashes, joint and kidney pain, heart palpitations, Raynaud's phenomena, numbness, sciatica, and at times I would collapse to the floor unable to get up. One day my G.P. was so frightened when I showed up with a bright red rash on my face, and so stiff I could hardly move, that he ran down the hall to get another physician to come look at me. He said, "Have you ever heard of lupus?" I said no and asked what it was, to which he answered, "Go home and don't worry. You worry too much."

The tests came back negative, and I went through a horrible year or so trying to convince him and my then husband that there really was something wrong with me. After a series of consults with specialists, I was given the following diagnoses: Raynaud's phenomena, fibromyalgia, non-sereal rheumatoid arthritis, then ANA-negative lupus (two skin biopsies for lupus were positive), Sjogren's syndrome, and then I was told I had a multiple sclerosis overlap with my lupus.

At age 45, while I was serving as a reporter and attending a city council meeting, my head and neck were suddenly forced to the far right against my control, and my heart raced so wildly I thought I'd have a heart attack. I was diagnosed with spasmodic torticollis (dystonia), and acupuncture helped significantly. (I had been told brain surgery would be the only way to fix it.)

Then at age 49 in preparation for surgery, a hematologist at U.C.I. Medical School in California diagnosed Ehlers-Danlos Syndrome #4. He said, "You are really going to hate this one." He warned me about being careful of joint dislocations and bleeding episodes. He and his staff had quizzed me prior to diagnosing me about my joint flexibility as a child and love of aerobic gymnastics and modern dance as a teen, and about my father.

My father had been extremely hypermobile, and I remember him wrapping his ankles and legs behind his neck and balancing on chairs that way, or curling his ankles up above his thighs and walking on his knees. When he was 35 he developed severe diverticulitis and his bowel nearly ruptured. At 42 he had to have a colostomy. He also had unusual heart problems and at age 61 had a huge clot hit the medulla and he died a week later.

At 49 I was also diagnosed with von Willebrand's subset disorder (another bleeding problem). Between the EDS #4 and von Willebrand's I must have DDAVP infused before a surgical event or extraction.

At 51 I was diagnosed with a double heart block, neurological in nature, not physical. Then I began to have watery diarrhea, black tarry stools, abdominal pain, watery wheezing, tachycardia and bright red flushing. Doctors suspect carcinoid tumors (slow growing neuroendocrine tumors), and I was attemtping to be diagnosed for those last fall when I suddenly had a very unusual stroke.

I felt light headed and distant, and my hearing and visual acuity seemed diminished. I was weak and tremulous and decided to go to bed to sleep it off. Two hours later I awoke to the sensation that my bed was twirling through space a thousand miles an hour and I was being thrown forward against my will in sommersaults at the same time. I tried to make my way to the restroom, and my body was flung against its will into the walls and the doors and the countertop. I prayed for help, and I lived. It took me an hour to crawl to the phone and call 911.

At the ER I told the doctor I thought I was having a stroke as I was having identical symptoms as those my father suffered and many of his aunts and uncles who also had cerebellar or medullar strokes. The doctor did not believe me. Even though I vomited projectile for nine hours straight, my head hung to the left and my head and neck shook, and I told the doctor I had suddenly lost all hearing in the left ear, he said that I was obviously not sick and was being discharged.

I said, "Do I really look OK?" and he answered, "Well how do I know what you normally look like?"

I said, "My hearing is gone, I can't stop vomiting, my head is spinning, I can't walk, my head is shaking, and I can't feel anything on the left side of my face. Does this really appear normal to you?"

He then said there was nothing wrong and he was calling a taxi, and he was sending me home barefoot and in my vomit-covered nightgown. I protested, so he sent in a nurse who tried to convince me nothing was wrong. Next, they sent in the ER administrator who also tried to convince me that nothing was wrong. The administrator called a friend, who took two hours to get there. When she did arrive I was told to leave with her, and so I asked to use the restroom. I walked into walls, fell over on the toilet, etc. A different nurse who saw me said I scared her to death just watching me. She called for a different doctor to examine me who then admitted me.

It was still hell, as the original ER doctor was assigned to me and he did nothing but debate with me, saying that the chances of my having more than one connective tissue disease and M.S. was about a billion to one. From there I was sent to a nursing home with no diagnosis or protocol. At the nursing home someone called an ENT specialist, and I was transported by ambulance to him. Fortunately, he had studied a lot about connective tissue diseases and autoimmune diseases. He diagnosed a cochlear stroke and explained that the artery feeding the cochlea is the smallest in the body, and so a tiny blood clot can make its way through the body and then lodge there. After five minutes without sufficient oxygen to the cochlea, the hearing cells die and then the balance cells.

After that he referred me to an Oto-Neurologist, who has done a number of tests. He has now determined the stroke began as a minute brain stem bleed, and a clot the size of a pin head moved to the area of the cochlea and lodged. He said recent tests show cerebellar lesions, cerebellar ataxia, vestibular disturbances, peripheral nervous system lesions, and we are looking to determine their etiology.

I didn't think too much before about the Ehlers-Danlos contributing to all this until two weeks ago when I finally met someone else with Ehlers-Danlos vascular type. I looked up EDS with cerebellar lesions or cerebellar ataxia on the Internet, and there were sites that came up linking Chiari Syndrome with some EDS patients. So the cerebellar lesions and the ataxia could be part of the EDS panorama of expressions. Now comments like the one my physical therapist made about my neck being so hypermobile, "and that's not normal," make sense.

Then I was told there is a study being done in Maryland, headed by Dr. Nazli McDonnell, regarding EDS patients and overlap connective tissue diseases. She told me that there is more propensity for lupus or rheumatoid arthritis or MS to occur in people with EDS. So now I will be a volunteer for the study.

Despite all my medical problems I have achieved much. I started the Lupus Foundation for the state of Utah in 1982. I won a special award from the governor for memorable volunteerism. I became a reporter and won nine writing awards, and interviewed presidents and movie stars. Each day I try to live my life to the fullest despite my pain and disabilities, and would recommend that to anyone just being diagnosed with any of these disorders.

Acupuncture, massage, herbs, vitamins, biofeedback, meditation and prayer have all been very helpful to me. Unfortunately, I have never had the support of family, and worse, my ex-husband has had a field day turning family members and employers, neighbors, etc., against me, meanwhile making me out to be a hypochondriac.

I moved three states away from him and my family. I now have a wonderful group of friends and loving healers and church members. Several wonderful "alternative healers" have been brought into my life, enriching it so much. So I am blessed through it all.

Shiela

skytoucher@sbcglobal.net