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Finally answers, I have an autoimmune diagnosis

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Finally answers, I have an autoimmune diagnosis

Postby missgamecock » Tue Oct 05, 2010 10:57 pm

by missgamecock (6064 Posts), Tue Oct 05, 2010 10:57 pm

and it is NOT fibromyalgia. Saw a new rheumatologist today that I had been trying to get into for the last 18 months. They opened a new office and the new location had openings. Finally answers. After a complete review of my medical files, history, examination, bloodwork, they think I have Lupus. So Kara was right. They said that I absolutely no way possible have Fibromyalgia and that quack that I saw just threw me in that box. For now, she is using the diagnosis unspecified connective tissue disease. Once she gets all of my tests back (I have a VERY long lab slip), eye dr slip, etc, they can definitely say lupus (I already meet the diagnosis criteria based on my history and files, she wants to wait till she gets my current tests back). She said that clinically my symptoms are lupus. My bloodwork shows a very high sed rate and inflammation factors. My ana was negative. However, three things with that. One - it could be just not showing in my blood yet. Two - I have high inflammation factors and sed rate plus clinical symptoms and exam, they can make a diagnosis just off of that once they confirm everything off of it. Three - She said 3-8% of patients that have lupus do not have a positive ANA. She said it was the whole picture, not one specific test.

She said by my history, exams, etc, it is attacking my lungs, kidneys, joints, and possibly the reproductive system because my endo is back. She confirmed swelling in the affected joints. I got the pleasure of a big freaking prednisone shot in the butt today. She is starting me on plaquinil which is a mild lupus drug. She said it will take about 3 months to take effect. She is very concerned that I am dumping protein again. I said well I figured it was damage from having pe. She said maybe but if I had negative protein tests after Cate was born and now I am all of a sudden dumping protein in absence of an infection. It is attacking my kidneys. I am really worried about that. I get the lovely pleasure of doing a 24 hour urine test with creatine clearance AGAIN. So I will be dragging my pee jug to work and putting it in a cooler (can't imagine the people at work like seeing that in the fridge). I have to go to San Antonio next week. So I HAVE to do it Friday as my appt is on Saturday to get blood drawn. She wants it done at a specific nationwide well known lab as she said that it has better sensitivity. She has had patients test negative at various labs in the area (hospital ones). Then they go to this one and bam, it shows up positive. Kind of sucks that I have to go into the city just for lab work. I am going to be trying to hydrate as much as possible.

She said that other dr was wrong. She was infuriated by the care that I got as it was NOT complete. He just ran blood tests and said well you have fibromyalgia. She said NO WAY it was that. I have none of the FM symptoms except being tired.

I am sad that they think it is lupus. I am glad that we have a potential diagnosis we can work with and she is already putting me on lupus medicine to counteract what is going on. She said it wasn't going to cure it as there is no cure. However, it would most likely tone down the flareups, etc. Treatments are much better than they were even 10 years ago. She said that if I had just followed that quack, it could have killed me because it is attacking my internal organs. She was very interested in the fact that I have had severe pe, recurrent mcs, and endometriosis.

So now I am trying to learn as much as I can about it.
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Re : Finally answers, I have an autoimmune diagnosis

Postby rosalinda » Wed Oct 06, 2010 09:01 pm

by rosalinda (578 Posts), Wed Oct 06, 2010 09:01 pm

oh Sabrina, I am soo sorry to hear that it might be lupus. I agree with you that learning all you can about it is the best defense. I'm interested to know what symptomatic treatments are? At least now you know what the heck was going on with you.
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Re : Finally answers, I have an autoimmune diagnosis

Postby rebeccac » Wed Oct 06, 2010 10:22 pm

by rebeccac (761 Posts), Wed Oct 06, 2010 10:22 pm

Take care, Sabrina. I'm glad you finally got some answers.
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Re : Finally answers, I have an autoimmune diagnosis

Postby joker » Thu Oct 14, 2010 11:59 am

by joker (1212 Posts), Thu Oct 14, 2010 11:59 am

I'm sorry to hear that, but it is good that you finally have an answer and now you can arm yourself with as much info as possible to get yourself the best care.
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