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I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.

In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.

As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.

Email: autoimmunediagnosis@gmail.com

Medical Disclaimer

This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.

Wednesday, September 16, 2009

Chilblains Lupus

Chilblains (sometimes called perniosis) are extremely painful sores that appear on the extremities such as fingers, toes, and ears. The red swollen sores usually occur during very cold yet humid conditions. If the sores last for extended periods of time or occur during warm weather, the Chilblains are more than likely caused by a connective tissue disease. Chilblains are most commonly associated with Lupus but are also seen in patients with undifferentiated connective tissue disease and Raynaud’s.

Clinical and histopathologic features and immunologic variables in patients with severe chilblains. A study of the relationship to lupus erythematosus.

Chilblain lupus erythematosus (lupus pernio): clinical review of the Mayo Clinic experience and proposal of diagnostic criteria.

Below are some pictures of my feet with Chilblains sores. It is extremely painful and I wanted to cut my toes off. When the sores start to heal the pain is replaced with intense itching. Not fun. Chilblains Lupus is a rare symptom of Lupus and most Rheumatologist have never seen a case. Three Rheumatologist saw my feet in person and another three saw the pictures. None of them could identify the sores. Trental and Plaquenil are suggested as treatment for Chilblains Lupus in medical journal articles. Prednisone instantly healed my sores and Procardia helped keep them from returning.




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