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Robin: Difficult Diagnosis

I am hoping that someone can help me sort this all out.

Mask by Shelley Ensz Hello, My name is Robin. I have been very confused about all of this. About twelve years ago, I started to have symptoms. I had these strange bumps on my hands. They biopsied it, and said they did not know what it was. They sent me to a specialist, who said I had lupus.

They sent me to another doctor, who said they were wrong, that I had hypothyroidism, and put me on Synthroid. While I was pregnant with my son in 1990, they induced labor, because my body was attacking him. Something to do with anti-M. I still do not know what that means.

I also have been diagnosed with a seizure disorder, which took years to figure out. They told me I was under stress, due to my husband having Hepatitis C, and going through a liver transplant.

As time went on, my symptoms got worse. My hands and feet are always freezing. My rheumatologist said I have scleroderma, but just lately she said now she is not sure if it is that or fibromyalgia.

I have the symptoms of night time body itching, swollen joints, mostly in my hands and knuckles. I have severe memory loss. My poor family knows I can't remember how to get places, what precious things they have done, how to keep my job things in my brain, or anything else since this has all started.

I figured most of it had to do with the seizures, and all the medications I have gone through. I am just wondering if this is diagnosed right. I have positive ANA, and low C3 and C4 (whatever that means).

I am hoping that someone can help me sort this all out. I know that there is some kind of arthritis or autoimmune disorder, just not sure which. Any suggestions would be greatly appreciated.

On the lighter note; I have three children, ages sixteen, fifteen, and eleven; and a twenty-six-year-old stepson with two children, so I am a thirty-eight-year-old grandma, and enjoy every moment. My husband and I have been married for eighteen years, and he is doing okay with his health at this time. I refuse to let the doctors tell me that all of my health issues are stress related. I am sure it does not help, but it is not the baseline diagnoses.

Thank you for any input. Have a great day.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: RobinMack757
Story posted 4-26-02

Story Artist: Shelley Ensz
Difficult Diagnosis
Pregnancy and Scleroderma
Go to Robin E: Scleroderma, Lupus and Raynaud's

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