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Kellie: Overlap Scleroderma and Mixed Connective Tissue Disease (MCTD)

I found I am not alone.

[Butterfly] I recently came across sclero.org when I began researching my longterm illness. I was so relieved to read about many people who have had the same experiences and symptoms as me. Not that I wished this on anyone, but I was not alone!

In 1993, I developed toxic shock syndrome (TSS). At the time, I thought it was a bad case of the flu. By the third day, a friend came over to bring cold medicine only to see how sick I looked. He told me he was taking me to the emergency room. I was lucky, because I was near death, and he saved my life. After going through TSS, I never felt good from that moment on. I always caught anything and everything you could catch. My body began to change and slow down.

By 1996, I really was not feeling well. I went to my gynecologist as my periods were very irregular, and they had always been like a clock. The doctor claimed my thyroid was out of control and he could not understand how I was even walking around. Although he never did a complete examination, the doctor prescribed thyroid medication. After a few months on it, I felt no different. I returned to the doctor weekly, complaining of weight loss, seizures, and extreme sensitivity to cold. The doctor ignored those symptoms.

One day, I noticed my neck was swollen and when I swallowed, I noticed a lump. Through my insurance plan, I requested a different endocrinologist, who immediately scheduled the correct procedures to find out whether the lump was a tumor. The initial findings were that it was. The next step was to rule out cancer. After much consultation, I decided to have a needle biopsy before agreeing to surgery. I had been warned that needle biopsies are often not conclusive, which was the case with my biopsy. But the doctors agreed the tumor had to come out. I was scheduled for surgery to remove half my thyroid. The doctor told me the odds of the tumor being cancer were pretty low.

Five days after surgery, the doctor informed me it was papillary/follicular cancer, a rare combination of aggressive and nonaggressive cancer. The next day I had surgery to remove the remaining half of my thyroid. During that time, I was also diagnosed with the autoimmune disease, Hashimoto's thyroiditis. It is rare to have an autoimmune disease and cancer at the same time. I was told nothing much could be done about the Hashimoto's except live with it. Does that sound familiar to any of you? I was also diagnosed with fibromyalgia. So I was completely devastated by all the news.

All that time I was never referred to any type of support group. After my thyroidectomy, I was never given any postsurgical advice on how to cope without my thyroid. For women, it is critical to regulating metabolism and other bodily functions. Doctors only told me, "You should start to feel better once your body gets regulated to the medication."

Needless to say, three years later, I feel just as bad as I did before the cancer, and my medication never seems to regulate anything. I should mention that during this entire ordeal I was fighting with my health plan on what they would approve, which was very stressful and did nothing to help me mentally.

After flip-flopping from one endocrinologist to another, I ended up with one I liked. She always listened to what I told her about my thyroid, but she was not aggressive in finding out why my arms and legs were numb and burning. No part of my body was pain free. I also told her my energy level was at an all-time low. I used to be very active in all sports and now just walking a flight of stairs was almost impossible.

By strange luck, my insurance changed again and I was not able to continue seeing her. I ended up at another clinic here in Los Angeles. I do like my doctors but still, they never go that extra mile to investigate my symptoms. I recently started having digestive and severe swallowing problems. I underwent a very uncomfortable procedure with the camera down the nose and throat. I have a seven-second-plus delay in swallowing (most people swallow in under two seconds). The doctors had no explanation other than they think a main muscle may have been disturbed during the thyroidectomy.

I have major dental problems. My teeth break at a drop of a dime, and I have TMJ to top it off. I have positive antinuclear antibodies (ANA) for lupus and Sjögren's Syndrome fifty percent of the time and they cannot tell me what is going on.

My personality has completely changed. My anger has come out in very negative ways. I knew it but did not know what to do about it. People were telling me things about my personality that just did not reflect who I was all these years. This devastated me. A man who had become very special to me, recently told me that the anger I directed toward him and my overbearing personality were just not working for him. I sat there and cried. Was he really talking about me? My anger was how I coped with my illness, yet I did not know how or whom to talk to about it. I was mad at him for not being able to spot it, to recognize it. How could he? Growing up, I was always the one with no temper and was anything but overbearing. Needless to say, our relationship became an often-strained friendship. Understandably, my anger made it almost impossible for him to get close to me. It makes me very sad, more than he will ever know. My illness played a major role in that relationship's demise because I waited too long to seek help for my anger. I did enter therapy to address the anger issues, and that was when I started to research scleroderma.

Information from the sclero.org website led me to Dr. Daniel Wallace, a scleroderma specialist here in Los Angeles, to find out if I do indeed have scleroderma and, if not, what exactly my body was doing. I will also be joining an autoimmune support group.

An autoimmune disease is very debilitating and plays havoc with your mental state. Nobody should have to go through what I have without some type of support group. People with illnesses, such as cancer and autoimmune disease, often stop talking to their friends and family members for fear nobody understands or wants to hear about it anymore, which is devastating.

~ Update May 2000 ~

I have been diagnosed with Raynaud's phenomenon and Sjögren's and am in the long process of trying to determine if I have scleroderma. In the last month, I have had a pulmonary function test (PFT), CT scan, and an echocardiogram. None of these tests are showing the doctors the conclusive evidence they need to diagnose scleroderma. I am scheduled for a pulmonary exercise test next week to see why I am having such difficult time breathing. I have extreme pains in the left side of my chest. I am barely able to walk up a flight of stairs without being winded and tired, and my arms and legs feel like lead.

I was put on medication for the Raynaud's phenomenon, but was taken off it after two days because my blood pressure dropped too low. Now I am on an arthritis pain medication to help with the inflammation. So far, I have been able to tolerate it. I am very frustrated and stressed, as you can imagine.

~ Update September 2000 ~

It can be so overwhelming: thyroidectomy, Sjogren's, Raynaud's phenomenon, early signs of scleroderma, Hashimoto's thyroiditis, and fibromyalgia.

I just had a complete MRI done on my brain and spine. They thought I might have lesions because of the numbness I have all the time and the lack of use of my left side most of the time. My symptoms include fatigue; blurred vision; numbness in arms, legs, and fingers; severe joint pain where I can hardly walk or lay down; shortness of breath, and headaches.

Although I try to stay off medication as much as I can, I take medicines for my thyroid, Sjogren's, and migraine headaches. My mood swings were really bad prior to medication.

I did join a support group in Los Angeles and got online with people. I am still in therapy to talk about my feelings.

My neurologist found that due to Sjogren's, the gel-like substance between my vertebrae is being destroyed. I am beginning physical therapy, which will help slow this down. Exercise is a catch-twenty-two: if I feel good enough to do it, I am in severe pain afterward. That is why I will start physical therapy so I can start to rebuild my body.

I am very lucky as I still work and have a crazy schedule. I raise money for a major children's hospital here in Los Angeles. I have to be in front of people every day putting on a happy smile.

~ Update January 2002 ~

After two more years of getting sicker and weaker with increased headaches, complete loss of movement of my left arm, partial loss of movement to the left leg as well as memory loss, I finally took matters into my own hands. I went to see one of the top scleroderma specialists at University of California-Los Angeles, regardless of what my insurance plan approved. This specialist believed I may have lupus along with the Sjogren's and Raynaud's phenomenon. He advised me that I might have what is called secondary or underlying scleroderma, often associated with Sjogren's, but not full-blown. He sent me to a top lupus doctor, and I was diagnosed with borderline symptoms of lupus. The lupus specialist was not convinced of full-blown lupus. He advised that he would watch me carefully and referred me to a top doctor at Scripps Clinic in San Diego who handled Sjogren's to see if the headaches and loss of movement on my left side and loss of memory were related to Sjogren's.

While at Scripps Clinic, I was diagnosed with seizures and small strokes, also known as transient ischemic attacks (TIAs). In the opinion of the doctor at Scripps, a thirty-nine-year-old woman should not have near complete loss of control of her left side and memory loss, and this was not being caused by the Sjogren's, but by something else. They sent me back to a top neurologist where I had an MRI, spinal taps, and PET scans.

I was diagnosed with one band of multiple sclerosis (MS), although the doctors felt that could be disregarded as many patients with autoimmune disease have at least one band of MS show in a spinal tap. They also discovered a problem with the frontal lobe of my brain, as seen in patients with autoimmune and other serious diseases. After many more tests, it was determined the TIAs were due to an overproduction of calcium, which does not allow the blood to flow freely. I was prescribed a calcium channel blocker and one baby aspirin a day with my other medications. I was placed into two months of physical therapy to regain the use of my left side. As a result, I was out of work for two and a half months.

After finding out how I had been misdiagnosed by the doctors in my health plan, I wrote a letter of appeal to my insurance company demanding they reverse the ruling and pick up all costs. I received an apology letter and the reverse ruling from them.

You have to fight for everything with the insurance company or you will get nothing approved! Trust me! I have fought for everything and had to follow up on referrals, and so on.

It is helpful to have our friends and family read as much as possible about our illnesses. It helps them understand the disease and what we are feeling, and it provides them tips on dealing with it.

I have my good days and my bad days. Soon I will be forty years old and my doctors say they have never seen a patient with all these diseases look so good. I still exercise. I eat well with a low-carbohydrate diet, and I still work full time.

I would like to thank my friend, Natasha, for suggesting I submit this story. Working is a double-edged sword. I work for the City of Hope Cancer Medical Center in Los Angeles. I am lucky, because they have been supportive and understanding. We have a saying at City of Hope, "There is always hope." I truly believe that!

~ Update April 2002 ~

On 3-27-02 I was rushed to ER by the paramedics for severe pleurosis of the lung. I needed to have an I.V. with morphine and an injection of anti-inflammatory medication in the I.V. as well. This is the second time I have been rushed to ER for this problem due to Overlap Scleroderma and MCTD.

To Contact the Author

Kellie
New email address needed 07-18-06 SLE.
Old Email Prefix: critical50
Story posted 4-10-00
Story updated 5-5-00
Story updated 10-10-00
Story updated 1-29-02
Story updated 4-15-02
Story edited VH1: JTD 9-9-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
Cancer and Scleroderma
Fibromyalgia
Hashimoto's Thyroiditis
Lupus
Multiple Sclerosis (MS)
Raynaud's
Sjögren's Syndrome
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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