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Well,
Yes, my hemoglobin, hematocrit, red blood cells, platelets are high...so it changes the viscosity of the blood making it sluggish and thicker which yes makes vasculits very common as well as blood clots where you do not need them and strokes. Many tests for vasculitis, and other tests for inflammation will always be negative in me or very low. I do not have a spleenand the spleen regulates the red blood stuff, so now my bone marrow produces too many cells, my white blood count always runs about 10,000 to 11,000 also, a little high.
Last year during my FLARE-UP, my liver enqymes were a little high...and came down as I got better so not much thought of it. Now, my heart, blood pressure is high so it is obvious it is being attacked and the vessels in my head are attacked along with the cranial nerves cuaseing the ptosis, drooping of my eyelids during a flareup and the severe headaches and numbness on right side of face, neck, mouth, eye, ear, etc and I drule out right side of mouth, since I cant feel it. I am dizzy, fall over like the room tilts and I feel I am still stright but I am falling over...they are all vascular things and lupus, well, my opticcal lobes become inflamed.....behind and around my eyes causing blurry vision, double, and I cant see at night very well. I also have the severe bone and joint pain, fevers, red butterfly rash on cheeks, loss of appetite, hair thinning, the red/purple/white hands and feet, so cold then when I finally can get warm sometimes they burn. My neck glands swell during this and sometimes sores in throat/back of mouth. I feel very ill like the flu but worse that will not go away and somehow people expect you to still function.I have the significant HIGH ANA 1:2560, My SSA is 68.4 on the lower high which is anything <10 . SSB-negative. It shows sjogrens is probably a secondary to the other....usually in just sjogrens, the SSA and or SSB is very high and ANA is high but not as high as mine. WHo knows what they will tell me....My anti DNA is <10, normal. I know a few of my complements are high but the CH3 and CH4 are normal, it is the other complements, I forget.....and they did not seem too concerned with it. I get alot of urinary infections...lower back pain, etc....but kidney tests have always been ok and just told infection is all. Last year I was short of breath and trouble getting my breath in....was scarey. They did not do an Xray, just said that goes with autoimmune things at times. I actually believe it is a lupus, sjogrens, raynauds combination....I would not be surprised if I am just told mixed connective tissue disease becuase of all 3....I cannot take the plaquenal becuase I have ongoing eye problems....and had catarac surgery at the age of 38. Another weird thing about me, I also had eye lids ptosis surgery 2 times last year...but they still droop telling them it is muscular, nerves, not they eyes themselves....but I get pain behind my eyes, deep into my brain, the orbital opic space becomes inflamed. Something attacks it. The joint pain and fatigue are the 2 things that bother me the most on a daily basis....keeping me from being able to somedays get off the sofa much.....unable to stand, walk without my walker. I think I am at my wits end, since my mom is so ill in the hospital and I have n o other family to help me with my kids or take care of them if I become very ill....and my sister lives 5 hours away and has her own family....I have no other family. So I MUST get treatment, I waited patiently 3 years, sold my home becuase I could not care for it and the swimming pool, etc,l the huge yard, myself...now I live in a townhouse with lawn maintenance....I made my sacrifices becuase I had too, it is about time some doctor looks into what is going on with me so when I have a flare, I want a protocol on how to be treated, regardless if I have a diagnosis or now....that is my biggy, I want some treatment in place and something to be tried on me to make me feel better daily between flares...it is like I am never well anymore just always worse....I kept my chin up, but now I had enough, I have no choice but to demand this from them, just a treatment protocol is all....I cant get worse....I got noone to help me or my kids...noone. My friends kind of went on with their life, they do not understand the debilitating pain and fatigue, and other symptoms....and I do not expect them to understand, I have trouble myself understanding. I live moment to moment....my mom probably will never come off the ventilator, and I need to care for her a little too.
thanks you





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