Happy Thabnksgiving. My name is Karlene. I'll start with a brief past history, I went blind in my left eye when I was 35 or 36 they ran the usual tests, diabetes, did a MRI of my brain, no lesions, I had steroid IV for three days then my sight came back although not 100% and have some color blindness because of it. I had a vein occlusion and had laser surgery done due to bleeding in my eyeball. I was told I had optic nueropathy which in turn caused otic neuritis. not sure on my spelling. I was also told that because they couldnt find a REASON why this happened it was possible later in life I could get MS or lupus.
Ten years later alost to the date I went blind in my right eye. Yes total blindness both times, this time I was very ill also, I lost my memory, couldnt hardly walk, couldnt think, I literally felt like I was dying, my face was numb on the right side, it felt "droopy", I saw a neurologist who immediatly hospitalized me, I was there a week, they did a CT thinkiomg I had a stroke I hadnt, they too did the IV steroids for threee days and my sight came back although once again not 100%. this too was diagnosed as optic neuopothy. But required no laser surgery. I was also diagnosed with prenicious anemia.
now in 2011, I started a job where I was on my feet all day, oh I better mention this I was obese at the time, I hate that word but it was true, so I start this job and I get these joint pains, swelling burning. I was in severe pain to the point of crying at my job and I worked in a store. Id go home sit in a hot bathtub and then lay on a heating pad. I could hardly walk, lay, sit, nothing was comfortable. I could do NOTHING at home. now I want to say I do have a high tolerance for pain so I go to the ER and the first time they give me Tramadol, and naproxen. I also take nuerontin for petit mal seizures, so I go to work and Im literally taking handfuls of this tramadol and nuerontin and naproxen because Im still in so much pain I cant stand. sit walk lay. I go back to the ER a week later and they give me a round of steroids like they would when Id have a severe asthma attack. wow what a difference, but it didnt last. The doctor took me off work, disability, so I finally get some blood work done as this is not done in the ER here for some reason. the test comes back RA positive. mean time Im still hurting but not AS bad because im able to sit lay stand whatever i need to do at MY pace and on MY time. so the doctor does a ana test and a factor test that come back negative. Im sent to a rhuematologist who I tell my past history to and show him my hair loss on my head my bruising my skin issues and he reruns the ana tests and some other stuff that all come back negative or normal. so I KNOWING MY body start crying and want to know what is worng with me. there IS something wrong.Ive lost 64 pounds also since Feb when I was last in the ER. Im grateful for the weight loss, I needed to lose it. Ive been sent to an orthopedic surgeon after having just an Xray no MRI and he in turns sends me to a pain management doctor, I am NOT into taking these pills and not having a diagnosis. in fact my body has a high tolerance to medication and I usually need high doses of very strong meds for thjem to even work, and then they onkly work for about 2 months, so I stop taking them because I refuse to put these drugs in my body for no reason, if they arent working why take them. Im scarry enough about putting man made meds in my body, too many bad things can and do happen. so you get my point on that. My problem is there is still clearly something wrong with me, today for example I am sick to my stomach, my whole body hurts, bones joints, muscles, I have bruises just popping up and BIG ones, contusions even, for no reason, I wake up with them on me and I sleep alone, my husband is on vacation. I woke up one morning with a bruise on my left arm on the skin that runbs down the bone as your pinky finger that looked like a human bite mark teeth and all. no i do not bite myself. the bruise just looked that way. tonight i have a bruise on the palm of my hand. there is NO reasoning for these brusises these aches pains, the stocmach nauseousness, Im extremely tired. I have given so much information to the doctors I cant believe Im still waiting for some diagnosis. I have county medical insurance which isnt helping either, I had an appointment Wednesday and I arrived and she says my medical isnt good any more, mind you I redid my appliacation in time and on time for it to be active. so there are issues with having no income and relying on county medical. Im 49, I have worked my entire able life since I was 16 on the books. I have applied for didsability which was denied and I then got a lawyer, so not am I only in physical pain, I am dealing with the mental part of NEVER having to rely on anyone for anything in all these years, to having nothing. is there anyone out there with these symptoms that has been diagnosed. I swear I have actually told the doctors I feel like IM dying from the insode out, with the pain and bruising, the loss of hair, i had thiock beautiful hair that has fallen out so much its so thin you can see through it, it grows, slowly, but I lose hands full EVERY day. not just a few shedding hairs I mean clumos on my pillow in my brush. Im getting scared. I told my Daughter i feel like i might have cancer, but wouldnt that show up in blood work somehow? Like your red and white cells? My hands today my right one especially is so swollen and tightI can barely bend my fingers. HELP!! The meds arent working right anymore to where I take EVERYTHING at night. I take 1000 mg of naproxen, 10 MG of percocet, 6 mg of klonopin, I quit taking the robaxin, it doesnt work. and I take 900 mg of neurontin (gabapentin) and really i need the 800 mg tabs. if I dont take them ALL at nioght I have horrible dreams of pain and I end up waking up and I am in horrible pain, my pain mostly is in my lower right back and both hip bones. elbows shoulders wrists fingers toes every joint but my ankles. and as I stated the most severe is my hips. I have been sitting on my left **** cheek for a year because if I sit on my right one I feel the compression on my lower right whatever is down there. I have had swollen lymoh nodes in my neck and right groin? area I am a female. so my right upper thigh where your leg bends on the inside. My paps are normal. but there is CLEARLY something wrong with me I KNOW my body. anyone, anything?? Help Please.