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St Thomas Lupus Trust
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anyone else have these problems please help

Hi all this is my first time writing on here. I'm a 20 year old female with health problems for a few years now. I'm kind of feeling like giving up like no one is listening. First let me start out by saying ive been sick since a very young age major surgery at 3 months to correct severe acid reflux and hernia. As a child chronic ear infections, strep, severe asthma attacks. As I hit my preteen years i had no more sickness was fine for a few years then the joint swelling started, the hives just from hot water this strange sensation in my legs that felt like my legs were extremely hot even though they werent burning hot to touch like they felt on the inside. I would have to get ice packs or cold rags to make them feel better. My hands and feet were always ice cold even if my legs were hot or my body felt perfect. Then my doctor decided at about 14 to run some tests. I came back with a positive ANA. He sent me to a children's rheumy because in his 40 years of being a doctor he was 99.9% sure i had lupus. The rheumy said to give it more time she couldn't diagnose me with such small amounts of symptoms. Then at 16 i became pregnant and couldn't see a children's doctor any longer. Once my child was born a couple months after things got much much worse. I began to have severe joint swelling, joint pain, bladder or kidney infections, went to eye doctor after two weeks of feeling like something was in my eye just to find out it was just inflammation, blood in my urine even when i dont have a bladder/kidney infection. Im struggling with migraines and im treated for depression have been for 3 years as well as anxiety. I had my tonsils removed a few months ago due to them constantly being so swollen without an infection in between the times id get tonsillitis. Ive had tons of blood in my stools so bad ive already had a colonoscopy. They found inflammation in my bowels and no reason for it. My doctor ran the same ANA test about two years ago and found that my ana number was (higher or more speckled whatever the exact word is?). basically she said yes you definitely have something going on im going to refer you to a rheumy. i lost my insurance until recently. i just feel like im at a complete loss. i have an appointment set for a rheumy. but i feel like its going to be the same thing all over again, i feel like my symptoms and inflammation test and ana test are being ignored once i get to the specialist. i dont know what to do. Does anyone else have any symptoms like this and have lupus? im sick of being tired constantly im sick of being in pain. im 20 years old my body shouldnt feel this way. i feel like its going to be like this forever and my symptoms will never be serious enough to any doctor and i just keep getting worse. If anyone out there has advice or these symtoms and has lupus or had went through this before being diagnoses please let me know. need advice suggestions anything...

1 Reply

Hi I'm norma I was under a rheumatologist around the same time as you are I'm now 58yrs of age, I am blind but that's a different condition. But try to hang in there you know your body better than any specialist what are your prominent symptoms and blood results.


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