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Old 03-22-2009, 11:36 PM   #1
Join Date: Mar 2009
Location: jonesboro,ark.
Posts: 2
nanna870 HB User
Talking lupus

i have been diagnosis with lupus, i was 35yrs old when diag. i was also working as a nurse. i had freq. kidney stones, blood clots with 2 or more pulmonary embolism, severe joint disease, loss of hair, and several other symptoms,but no was able to tell me what it was. my mother had lupus also,she loss some pigmentation more in the face and hands, arms.after several or more hospilization, i was beginning to think i had a mental problem. finally i ask to be sent to a rheumatoid physician, Dr. Roberts. after a brief exam, and medical background,and the fact that he took care of my mother,he told me i had lupus and most likely had it all my life. and that all these other things was a symptoms not illness, that all the above problems was brought on by lupus.I have a da.35yrs old, she started having a lots of my symptom,running low grade fever,and i ask the doctors to test her, at that time she was around 22yrs old ,tested positive to lupus. what can we as black females do to bring about faster diag. of this deadly illness? we have my grandda. tested about once a yr. the lupus i have attacks vital organs. now it has caused me to have two heart attacks,with this last one i had to have 2steins.i had a couple of cardiac cath. as far as i know everything looked OK.i had heart attack Feb. of 2004 i think,then the one i had DEC. 21st i had one, 75%in the other.i need more info. thank you.

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Old 03-23-2009, 05:38 PM   #2
Join Date: Mar 2009
Location: pismo beach ca.
Posts: 2
lookilue HB User
Re: lupus


As you can see I am new to this.
I have had Lupus for at least 15 years that I know of.
Seems the older I get the harder it is to get around.
4 years ago I had a stroke behind my eyes, due to the med. for Lupus, Ive learned to deal with that after time, but the hardest thing for me was learning to ask people to drive me any place I need to be!
I would love to meet other people who have Lupus, and learn from them how they have over came things in life, because of the Lupus.

Cant wait to hear from you, Lookilue

Old 03-24-2009, 02:01 PM   #3
Join Date: Mar 2009
Location: pismo beach ca.
Posts: 2
lookilue HB User
Re: lupus

I dont think it matters the color of your skin. It took them 4 years to be able to say I have Lupus, I am white.. i wish they would come up with a better test. I'm with you, they need to come up with a better test. lookilue

Old 03-25-2009, 04:49 PM   #4
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Join Date: Feb 2004
Posts: 5,719
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: lupus

nanna870, hi & welcome. I'm sorry to read about your histories: your mom's, your daughter's & yours. I certainly agree with you about the need for faster Dx. My own problems started in childhood, worsened at adolescence, and became multi-faceted & chronic in my mid-20's. I had rashes for 8+ years & multiple skin biopsies, yet no answers until I saw a teaching hospital rheumie.

Only one doctor, my current rheumie, asked me to write my medical history IN MY OWN WORDS, and to fax it before my appt. I'd completed check-off forms in many waiting rooms. Looking back, seems to me those drs. only wanted speedy answers that they could SPEED READ. Lupus really demands drs. who connect dots & aren't given to snap conclusions. Who aren't dismissive or disbelieving. Who understand you NEED a Dx, not WANT a lupus Dx. (Who would??!)

Have you read lupus hardcovers? Most libraries & large bookstores have Dr. Daniel Wallace, who is excellent (look for 3rd edition). So is Dr. Robert Lahita.

Hope this is the sort of feedback you're after; if not, YELL. Post more when you have time, OK? Best wishes to you & your family, Vee

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