The story of Elaine
Symptoms: swollen and crack lips, mucous membranes ulcers(oral and virginal), swollen legs, weak joints
Started: 1-jan-2012
It was started with an insect bite-like mark on my right shin. As days passed, both legs below knees were swelled and oral ulcers came out more than usual. I had fever on the first week of the new year but I was admitted to hospital(let’s call it hospital A) on the second week as the condition has gotten worse. I had appendix operation, blood tests and Behçet test during that week. My blood samples were sent to Australia but came back without a bad sign and the tests are negative. The doctors suspect that I have Behçet but the test was negative because the symptoms are almost similar to Behçet. After that a rheumatologist gave me +-2 months of steroid to stabilise my condition . As the dosage decreased, the symptoms came back. The side effect of steroid really bad, so I decided to change hospital to have another type of medication.
March 2012
I went to hospital B and did colon scope. The doctors at hospital B still gave me steroid and did blood tests. Still, the doctors were suspecting but had not confirm with what I’m having. The rheumatologist in hospital B still gave me steroid for +- 1 month and 1 week of azathioprine.
April – June 2012
I went to a wellness centre and tried more than 10 supplements at the same time as the doctor prescribed. It didn’t help me much and the supplements were expansive.
June 2012 – September 2013
Went to a Chinese-western medication in a naturopathic centre and started a special diet : gluten, soy, dairy, egg, nut, preservative, seafood, GMO free, fruits like cherry, tomato, strawberry…etc. . I’ve stopped eating meat until September. The medication worked for me but on and off. My parents thought the medication was controlling me.
September 2013 – November 2013
Met a man who cured many people with his family secret medication. Tried that but the medication was controlling me and have me hormone imbalance. I grew more hairs on my face, hands and legs. The muscles from the lower chin to shoulders, backs and belly swelled.
November 2013 – now
Trying lingzhi but ate too much in December. The Chinese doctor from China told me that my immunity is high enough to attack myself with antibodies, just as the doctors from hospital A had said. Now the Chinese doctor tell me to eat lingzhi bit by bit. I started to eat egg and meat but dare not to touch other food simply.
January 2014 – now
Went to meet the immunologist in Malaysia. Did blood tests and Behçet test again but still a healthy blood test result and negative. Took a bit steroid for few days and the muscles from the lower chin to shoulders, backs and belly swelled, stiffed and ache. He suspects that I’m having vasculitis disease and that is Behçet disease. The weird thing is, the symptoms are almost similar to Behçet but the test is negative. Hence my disease is still consider unknown yet treating as Behçet.
This real story was written on 25 January 2014. Still hoping a cure for me.