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Mother of Five
05-15-2012, 04:49 PM
Have not had an “official” dx, but out of the 11 criteria, I have currently or have had in the past a combination of positive ANA, positive anti-SSA/Ro, anemia, “epilepsy”, joint pain, and discoid rash, although not all at the same time, so that leads my primary care doc to suspect that I “may” have SLE, especially since I felt better while on prednisone during a bad bout of poison ivy. But what I'm most concerned about is my daughter as she has anemia, joint pain, discoid rash on face, neck, and occasionally legs, and photosensitive (she gets small water blisters on her skin after just a little while in the sun). She hasn’t had an ANA test yet as the pediatrician doesn’t think that any of her symptoms are related to each other. Unfortunately there is not a Rheumy in our area. Does anyone know of a good rheumatologist that’s associated with Cox Medical in Springfield, Missouri? Our insurance only covers Cox affiliated physicians so we’re limited there as well. And as Springfield is over 100 miles away, I don’t know anyone there who has heard good, bad or indifferent about any of their Rheumies, and I don’t want to just “pick one out the hat” so to speak, so any help will be greatly appreciated. Looking forward to meeting you all...

kim,l
05-15-2012, 05:28 PM
welcome to whl family sorry i cannot help you with rhuemi as i live in australia but i know how it is i have lupus and my daughter also has lupus and it took awhile for me to convince her doctors she had it , someone will come along soon who can help you with rheumi but just know i am here to chat when ever you need you can send private message or just on my profile page if you need to take care kim

Mother of Five
05-15-2012, 06:09 PM
Thanks!
I'm sorry both you and your daughter suffer. I was told it wasn't hereditary, but still I wonder.

kim,l
05-15-2012, 08:00 PM
it is thought to be with some people my mother also has it so in my family it is heriditary. hope you get your answer soon take care.

magistramarla
05-17-2012, 02:44 PM
Hi and welcome to WHL,
I'm also a mother of five (all adults now) and will soon be the grandmother of four.
I also used to live in Mid-Missouri. We lived in Columbia when my hubby was getting his EE degree, in 1981-1983.
Have you considered trying the University hospital at University of Missouri? They have a good medical school there, so there might be good rheumys associated with Mizzou.
Hugs,
Marla

mountaindreamer
05-17-2012, 07:12 PM
hi mother of five, and welcome to WHL. this is an incredibly compassionate and knowledgeable group of people, and I hope you find guidance here while you go through your diagnosis process.

I can't help you with rheumy referrals in your area, hopefully someone will come along who can. The search for a good rheumy can be long and frustrating. Just remember, that you are the most important person on your health team, and you must always trust your instincts. If you visit a rheumy, and don't feel that you were treated with respect and compassion, then do not hesitate to try another dr. This is your life that you have to learn how to live, and a "good" rheumy will value your input.

best of luck to you, and we will be here if you need to vent, or if you have questions

LenaT14
05-17-2012, 09:52 PM
Welcome! I am worthless in the rheumys in your area but I will tell you that my Mom has Lupus and RA and I have had related symptoms since I was about 8 years old and formally diagnosed at 31, started out with migraines very young, and fatigue. Then over the years random symptoms popping up, then all hell broke loose late last year. Best of luck to you and your family!

tgal
05-18-2012, 06:10 AM
So few doctors understand Lupus and it really angers me! You do NOT have to have all of the symptoms of Lupus at the same time. A Lupus diagnosis is made when you have a cumulative list of symptoms, meaning that you have had enough at some point in your history. Most good doctors don't even take an ANA test after they have a positive reading that meet the criteria because they know that it will fluctuate. Down the road when the ANA comes out negative it doesn't remove the significance of the positive one.

Try to find a Rhuemy that specializes in Lupus (although that is no guarantee that they will be any good) and go see him. Hopefully he will put the puzzle pieces from your history together and get you a good diagnosis.

Mother of Five
05-18-2012, 08:39 PM
Hi and welcome to WHL,
I'm also a mother of five (all adults now) and will soon be the grandmother of four. ....


Thanks, Marla...and congrats on all the grandbabies! We've still got all of ours at home, four of which are teens, so it will be a while before DH and I become blessed with any grands. I'll check Columbia out. Even though their docs are all out of network for us, it will still pay at least half. And half is better than none, right? :)


If you visit a rheumy, and don't feel that you were treated with respect and compassion, then do not hesitate to try another dr. ....


Thanks, Dreamer. And I'll be sure to keep that in mind. So many seem to have what hubby refers to as a "g_d" complex, where they know everything and the patient knows nothing. They tend to forget who is paying for their services. I have walked out on a "doctor" before, and while it left me shaken (I absolutely HATE confrontation), I would do it again.


Welcome! I am worthless in the rheumys in your area but I will tell you that my Mom has Lupus and RA and I have had related symptoms since I was about 8 years old and formally diagnosed at 31, started out with migraines very young, and fatigue. Then over the years random symptoms popping up, then all hell broke loose late last year. Best of luck to you and your family!

Thanks for the welcome, Lena. Hope this year is better for you. My daughter has been having symptoms since she was quite young as well. She's in her teens now, and things are getting worse. The sooner she gets a diagnosis (whether it's lupus, connective tissue, or whatever) the sooner she can get some relief. Her pediatrician just says take Tylenol as needed. :(


So few doctors understand Lupus and it really angers me! You do NOT have to have all of the symptoms of Lupus at the same time. A Lupus diagnosis is made when you have a cumulative list of symptoms, meaning that you have had enough at some point in your history. Most good doctors don't even take an ANA test after they have a positive reading ....


Thanks, tgal. I'm on a mission to find a good Lupus literate one. Since my ANA and Anti-SSA/Ro results have been positive more than once, but then later the ANA has been negative a couple times in a row, I going to take my previous test results in when I go to my first appointment, just in case it comes up negative again should s/he want a retest.

Saysusie
05-19-2012, 11:54 AM
I just wanted to take a moment to also welcome you. You have been given some excellent advice and I cannot offer anything better, nor can I help you find a good rheumatologist in your area. As has been mentioned, try to find one who specializes in Lupus and/or auto-immune diseases. My other piece of advice would be for you to learn as much as you can about Lupus and other auto-immune diseases that often overlap with Lupus. Educate yourself so that you can have an informed discussion with your doctor, so that you will understand the meaning of tests results, why tests are run and what they indicate. Especially acquaint yourself with the criteria used to diagnose Lupus so that no doctor can dismiss you based upon the results of any one test.
We are here to help you do all of these things and to answer your questions as best as we can.
Please let us know if you find a doctor and what you and he discuss and/or decide.
Welcome to our family
Peace and Blessings
Namaste
Saysusie