My name is Carolyn, I am 40, have 4 children and am on my own now with them. I am just finishing up full time study for a Diploma in Nursing and I live in Queensland, Australia. I have only just been diagnosed with mild Lupus in mid August so am currently trying to find out all I can and know this Lupus inside out. I was in the Chat room last night and it was suggested to me by a very helpful member that I should post and maybe get some info and opinions here. So far my tests have shown as follows:
Pos ANA
Mild titre of 160
Phosphate, WCC and Lymphocytes are all mildly elevated
CCP is negative
Rheumatoid Factor varies week to week from 27 to 48 (rarely normal)
Vasculitis screen was negative
Legionella pheumophila was borderline
ESR varies also up to 45 (rarely normal)
Low Calcium
High Chol
Have since done a urine test and is positive for Leukocytes and protein but otherwise normal.
So as for physical symptoms I have excrutiating pain in my upper left hypochondriac region radiating through to my back and down to my pelvis on really bad days. My ultrasounds have all been normal except for an enlarged lymph node on the neck of my pancreas which was confirmed by CT scan. Pain in right elbow (now gone but lasted almost 12 months), left wrist. Chest pain (but this may be radiating from the abdo pain), hair loss (male pattern), headaches (can last up to 3 or 4 weeks), now an then small areas of petechae, numbing of my hands during the night, wake up and they hurt.
My GP sent me to a med spec at the hospital and she diagnosed mild lupus but told me that it was senseless to send me to a rhuematologist as he would just laugh and send me away as my chems are so mild.
One thing I find that is strange is that several years ago my old GP used to test my immune system every month and used to tell me to take extra care of myself as my tests were always very low. So how can one have an overactive immunesystem if it was always consistently low???
Maybe am in denial or maybe am just praying to find out it is something else. I dont know how to plan my life now, I dont know if this "thing" will stay mild and manageable or will it just start eating me up.
There is probably a lot I have forgotten to mention but just yell at me and I will provide the info. And thanks to all who have already been supportive to me. It feels strange to find such comfort among total strangers and feel that you have just been adopted by a new family. xoxo :blush:
Pos ANA
Mild titre of 160
Phosphate, WCC and Lymphocytes are all mildly elevated
CCP is negative
Rheumatoid Factor varies week to week from 27 to 48 (rarely normal)
Vasculitis screen was negative
Legionella pheumophila was borderline
ESR varies also up to 45 (rarely normal)
Low Calcium
High Chol
Have since done a urine test and is positive for Leukocytes and protein but otherwise normal.
So as for physical symptoms I have excrutiating pain in my upper left hypochondriac region radiating through to my back and down to my pelvis on really bad days. My ultrasounds have all been normal except for an enlarged lymph node on the neck of my pancreas which was confirmed by CT scan. Pain in right elbow (now gone but lasted almost 12 months), left wrist. Chest pain (but this may be radiating from the abdo pain), hair loss (male pattern), headaches (can last up to 3 or 4 weeks), now an then small areas of petechae, numbing of my hands during the night, wake up and they hurt.
My GP sent me to a med spec at the hospital and she diagnosed mild lupus but told me that it was senseless to send me to a rhuematologist as he would just laugh and send me away as my chems are so mild.
One thing I find that is strange is that several years ago my old GP used to test my immune system every month and used to tell me to take extra care of myself as my tests were always very low. So how can one have an overactive immunesystem if it was always consistently low???
Maybe am in denial or maybe am just praying to find out it is something else. I dont know how to plan my life now, I dont know if this "thing" will stay mild and manageable or will it just start eating me up.
There is probably a lot I have forgotten to mention but just yell at me and I will provide the info. And thanks to all who have already been supportive to me. It feels strange to find such comfort among total strangers and feel that you have just been adopted by a new family. xoxo :blush: