I just found this board and am looking for others that might understand what I am going through. I am sorry if this is too long of a post, I am so upset right now. I hope this is in the right board.
I have had so many symptoms for 4 years and they are getting worse and more painful. It started with pain in my hands and feet, swollen glands in my neck, low grade fevers and sore throat. I kept getting more and more tired. It lasted for 4 months, doctors looked for hiv, strep, mono, hepatitis, and thyroid. Nothing was found. Then the fatigue got worse, the pain in my hands and feet got worse. I kept going to the doctor because I was so tired, my throat was red and hurt and my bones hurt...they would draw the same tests... they were all negative and then told me I was too stressed, worrying too much and needed to exercise more.
I became too tired to exercise and stopped, I knew something had to be wrong with me to be so tired all the time. I was one of those motivated, self starter, organic food, exercise freaks that took great care of myself... I got a cold a few times a year and that was it. All of that had changed.
I started losing tons of hair and became allergic to the sun and fluorescent lighting. My family told me I was a hypochondriac and I loved to "play doctor", I was crushed. I was struggling to get out of bed in the morning due to stiffness and pain, even though I slept I never felt rested. When I went in the sun, I got red rashes on my nose and cheeks, itching raised welts on skin exposed to it and purple bands on my nailbeds. I started avoiding the sun, wearing long sleeves and hats and spending as little time in stores with the lighting that made things worse.
Then I got huge ulceration of the septum in my nose. My doctor could not explain it and told me to put vitamin oil on it. I then had a pin point pupil one night that someone noticed and my eye started squinting so I went to an eye doctor. I had iritis of the eye, they put me on steroid drops for the eye and my eye doctor told me that can be an early sign of autoimmune disease like lupus that is attacking the central nervous system. I had never heard of lupus. I started getting ulcers on the roof of my mouth. I started to get tremors in my hands, confusion and horrible head pain. They did workups for MS and found lesions in my brain that were unexplained in origin but not MS compared to how they acted with contrast, they called it ischemic changes of unknown origin. I have four of them. My fingers in my hand started to get swollen and crooked, and my wrists were continually swollen and they get white or red in hot or cold temperatures. I was sent to a rheumatologist. I had High C reactive protein, CPK, Anemia, a pulse of 144 beats a minute, high platelets. ANA negative so they did not make a diagnosis and told me to come back in a year. I started having nausea, vomiting, loss of appetite, diarrhea and lost 27 pounds. I developed orthostatic hypertension and began fainting. I got a headache that was told is unknown in origin but is caused by brain inflammation... I had a spinal tap and went into systemic shock on the table. They put me on 60mg of prednisone a day for 13 months to control the headache. When the headache was uncontrolled I would get disorientated... confused and faint. I could not speak works but I could think them and I could not say what day of the week it was.
I get much worse around that 'time' of the month. My dermatologist saw rashes I got on my way to the office from the sun and scheduled a skin biopsy. When I went to the biopsy I had no rash, the biopsy showed evidence of a connective tissue disease that was 'vascular' in origin but it did not identify in a pattern that they knew what it was. My dermatologist told me I might have lupus but I need to see a rheumatologist again. I have had xray from my dentist that shows my jaw has been damaged by something that looks 'inflammatory'. My hand and foot xrays show inflammation and small amounts of bone erosion. I was told I have nailbed capillary loops and to stay out of the sun by my dermatologist.
My doctor has drawn multiple panels for immune disease. Twice my complement component C4 has been low and C reactive protein high, platelets are often high. ANA always negative. Anti DNA stuff, negative.
My family finally believes me because they see how sick I get, how much pain I am in, they have taken me to the ER because I faint and I do not know what day week or month it is. I recently had lab work done by my doctor and I am anemic, vitamin d deficient, dhea deficient, have high serum creatinine and something is wrong with my thyroid.
My urinalysis has not been normal for 2 years, it is very cloudy/hazy and has had trace protein before. I have what I call 'flares' sometimes and they come on if I am very stressed or if I spend more than 10 minutes in the sun. They start with extra fatigue, swollen glands, rashes, ulcers on my nose and mouth, head pain, fainting, vomiting, extra bone pain, diarrhea and will last for up to two weeks.
So I went to a rheumatologist again... they looked at the anemia, high CRP, CPK, low complement C4, eye doctor report, derm report and told me I can not have lupus because I am ANA negative.
Even though I am ANA negative something has caused bone erosion, iritis, resting pulse of 155 beats a minute, brain lesions, fainting, UV allergy, ulcers in my nose/mouth, headaches that are unbearable, chest pain when breathing, GI problems, abnormal blood urine and inflammatory markers. Now something is wrong with my thyroid.
What is wrong with me? I am so sad that I can not help myself get better no matter how hard I try. I feel so pathetic and hopeless. I thought maybe I was making it up, maybe everyone was right... until I saw MRIs with lesions and abnormal labs.
I have a family member with CNS lupus, one with Chron's and a few with RA. Can I be ANA negative lupus? Is it maybe negative when the lab is drawn but positive other times? I am so upset that something is wrong with my thyroid... is this mystery disease attacking it? If my brain, eye, heart, blood and thyroid are affected... what could be next?
I am so scared and upset. I still do not have a name for what is causing all this and the last rheumatologist told me it was not lupus and said maybe a seronegative RA?
I'm sorry but I am tired of getting so sick and not feeling better. I am going to doctors... I try to stay positive in my attitude and take care of myself but it is so hard now. I am in so much pain, so tired, or struggling with GI stuff. Now insomnia and more hair loss, hoarse voice maybe due to thyroid?
Take care you all. Thank you to any kind soul that is able to read through this huge post and offer any type of advice or experiences.