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mshelsmile
04-27-2006, 02:27 PM
Hi, I am new to this site. I saw you wonderfull people talking about the only thing that seems to be on my mind. My 14 year old daughter has been seen for posible lupus. I am sure it is, but when we finally go to to specialist, my girl was feeling much better. She has the typical red rash on the face that comes and goes. does it normally burn to the touch? The doc couldnt give me a good idea as to what would give a bit of relief to her face when it happens because "he didnt see it". He tried putting me off for another month but I put my foot down. My girl hasnt been able to put weight on her left leg in over a month due to pain. Theres times she cant walk at all!

One of the hard parts is her father. He lives in another state and is a NEW chiropractor. He thinks she doenst need medical evaluations he wants her to live with him and hell be able to fix her for free! HA! so full of himself. He doesnt even understand how sick she is right now. okay soorrrrry.

I am overwhelmed and I dont have any answers yet. What are the most important test to make sure she gets, She has trouble breathing at times because of pain and the doc just never responded to any ot the things I was telling him. I had fibromyalgia years ago and he say oh, she probable just has that. I know its not. Between not being able to go to school, being dizzy and having bad headaches, I dont know what all I can do to make her comfortable. Heat nor ice seems to help.

Thank you so much for having this site. I think just knowing theres others I can talk to and that she can talk to will be wonderful. I am going to let her get involved on here to.

Thanks for your time.......Mshelsmile

catlady4520
04-27-2006, 03:05 PM
Sorry to hear your daughter is ill. When I have the rash on my face, it does burn to the touch. A couple of months ago, I was in the hospital for a staph infection and my face rash got really bad. It was hot and burned to the touch.

I go to a chiropractor but he agrees that for my lupus, I have to see a rheumatologist.

Let us know how it goes!

Saysusie
04-28-2006, 11:19 AM
Hi Mshelsmile :lol: :
I want to welcome both you and your daughter to our family. With reference to the tests that should be done, please read the post "Lupus Diagnosis and Testing" in the Newly Diagnosed forum on this site which was posted by me on April 27, 2006. It is rather lengthy, but gives details about all of the tests run for lupus, their reasons and what the results could mean.
I, like many other lupus patients, have both Lupus and Fibromyalgia. The symptoms are quite similar and some even overlap. The difference is that lupus is a disease and Fibromyalgia is not.
I am so glad that you put your foot down with her doctor. Continue to be pro-active in her treatment and her care. Right now, you are in the most frustrating part....the diagnositic cycle. Lupus still remains a difficult disease to diagnose. Two reasons account for this difficulty:
1. There is no single set of symptoms that are uniformly specific to lupus.
2. There are no laboratory tests yet available that can prove conclusively that a person has or does not have lupus.
Most of the symptoms that we suffer from are also found as symptoms in other illnesses: fatigue, muscle weakness, skin rashes, fever, weight loss, etc. The diagnosis of lupus is usually made after a careful review of the medical history along with an analysis of blood test results from laboratory testing and some specialized tests related to the immune system. Since symptoms of Lupus present themselves slowly and may evolve over months or years, it can sometimes take years for the diagnosis to be made.
This can be a very difficult time for the person suffering from the disease and its numerous symptoms. Most of us have insisted that we receive treatment and medication, during this time, as if we had been diagnosed so that we could get some relief from the symptoms.
As always, I suggest that you and your daughter become experts on her behalf. Learn everything that you can about Lupus, its symptoms, its treatments and its various medications. You continue to be pro-active in her care and do not be afraid to question her doctors and to educate them. Insist that she be referred to a rheumatologist as they are doctors who are also qualified by additional training and experience in the diagnosis and treatment of arthritis, lupus and other diseases of the joints, muscles and bones.
It is important that you both know that you are not alone! We are here at any time that you might need us to answer your questions, provide information, give you support and understanding or to just listen.
I wish you both the very best!
Peace and Blessings
Saysusie