Gayla, My name is Karen. I have been diagnosed with the Lupus Anticoagulant Syndrome. Right now, my doctor says I do not have Systemic Lupus, yet I have joint pain, fevers, hair loss, a positive ANA, and pain in my chest and my right side when breathing. I have had 6 or 7 miscarriages, all pregnancies with a false-positive syphilis test. Don't get me wrong... I don't WANT to have SLE, but I know "something" is wrong. Some days I can't even get out of bed. My family thinks I am just lazy. All of my life I have been "sick". I just don't know what to do anymore. I have recently been hospitalized with kidney failure. I also at times lose sight in my right eye. I see a neurologist, a nephrologist, and an rheumatologist. MRI's don't explain the loss of sight. I am so tired and feel like giving up on life. No one understands when I can't get out of bed because my legs are hurting so bad! Thanks for listening. Your story, I'm Really Not Crazy! reminded me a lot of myself.
My name is Karen. I have been diagnosed with the Lupus Anticoagulant Syndrome. Right now, my doctor says I do not have Systemic Lupus, yet I have joint pain, fevers, hair loss, a positive ANA, and pain in my chest and my right side when breathing. I have had 6 or 7 miscarriages, all pregnancies with a false-positive syphilis test. Don't get me wrong... I don't WANT to have SLE, but I know "something" is wrong. Some days I can't even get out of bed. My family thinks I am just lazy. All of my life I have been "sick". I just don't know what to do anymore. I have recently been hospitalized with kidney failure. I also at times lose sight in my right eye. I see a neurologist, a nephrologist, and an rheumatologist. MRI's don't explain the loss of sight. I am so tired and feel like giving up on life. No one understands when I can't get out of bed because my legs are hurting so bad!
Thanks for listening. Your story, I'm Really Not Crazy! reminded me a lot of myself.
In the last 5 or so years I have been diagnosed with a wide variety of conditions, including: menierre's disease, chronic gastritis, esophagitis, arthritis, chronic cystitis, irritable bowel syndrome, acid reflux, constipation, hormone imbalance, mastitis and bell's palsy of my face and vocal chords. Finally, I've been referred to a Rheumatologist after 2 blood tests came back with a positive ANA and elevated SED rates and CRP. I've been told that it is probably SLE. I currently have migratory arthralgia, myalgia, extreme fatigue, malaise, fever, butterfly rash, burning or stinging of the skin, itching which comes and goes, GI complaints, palsy of vocal chords and upper lip, lightheaded, and balance problems that come and go. I also have a butterfly rash on my face. I know that this sounds insane, but I am so thankful that I have finally been told that there is something truly wrong with me that I am not upset with the thought of having Lupus! I couldn't believe that turning 40 could possibly make me feel as horrible as I have felt, although "my age" is what my friends and doctor seemed to think. I firmly believe that if I were a man with the same complaints that I would have been taken more seriously and not just looked at as a hormonal neurotic. I do not feel that my health care has been satisfactory at all and none of the physicians I have consulted so far have been knowledgable about Lupus. As far as having family support, I would have to say, "Yes and no." I would like to tell all my family that I am not crazy nor a hypochondriac and it is not my hormones! I continue to work full-time but it is an effort. I have to think "mind over matter" and push myself so I can get home in the afternoon and rest. My faith in God is my only means of coping at this time. I will be seeing the specialist on September 14, 1999. It takes a month to get an appointment!!! I had to really do a lot of reading and research myself over the past month as I have found that my family physician was not very familiar with Lupus or its symptoms. Thank you from the bottom of my heart. The other stories have been a God-send.
I've been told that it is probably SLE. I currently have migratory arthralgia, myalgia, extreme fatigue, malaise, fever, butterfly rash, burning or stinging of the skin, itching which comes and goes, GI complaints, palsy of vocal chords and upper lip, lightheaded, and balance problems that come and go. I also have a butterfly rash on my face.
I know that this sounds insane, but I am so thankful that I have finally been told that there is something truly wrong with me that I am not upset with the thought of having Lupus! I couldn't believe that turning 40 could possibly make me feel as horrible as I have felt, although "my age" is what my friends and doctor seemed to think. I firmly believe that if I were a man with the same complaints that I would have been taken more seriously and not just looked at as a hormonal neurotic.
I do not feel that my health care has been satisfactory at all and none of the physicians I have consulted so far have been knowledgable about Lupus. As far as having family support, I would have to say, "Yes and no." I would like to tell all my family that I am not crazy nor a hypochondriac and it is not my hormones!
I continue to work full-time but it is an effort. I have to think "mind over matter" and push myself so I can get home in the afternoon and rest. My faith in God is my only means of coping at this time. I will be seeing the specialist on September 14, 1999. It takes a month to get an appointment!!! I had to really do a lot of reading and research myself over the past month as I have found that my family physician was not very familiar with Lupus or its symptoms. Thank you from the bottom of my heart. The other stories have been a God-send.
[ Living Room] [ Kitchen] [ Holiday Suite ] [ Den]
[ Sarah's Photo Album ] [ Wood Shop Designs ] [ Bathroom ]
[ Bedroom ] [ Personal Lupus Story ] [ Closet ] [ Top Shelf ]
[ Library] [ Patio ] [ Crafting Shed] [ Background Boutique ]
[ Lupus Information Center ]
[ Lupus Survey ] [ Lupus Stories 1 ] [ Lupus Stories 2 ]
[ Lupus Stories 3 ] [ Lupus Stories 4 ] [ Lupus Stories 5 ]
[ Lupus Stories 6 ] [ Lupus Stories 7 ] [ Lupus Stories 8 ]
[ Lupus Stories 9 ] [ Lupus Stories 10 ] [ Lupus Stories 11 ]
[ Multiple Sclerosis Links ] [ MS Information Center ] [ Win An Award ]
