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05/08/2012 11:44 AM

Lupus Diagnosing

PixieBella
 
Posts: 9
New Member

Hi:

Just received a positive ANA Test. My pain areas are more than 20 and now my left chest, back hurt when I breathe in. The Cymbalta prescribed at 120 mg per day isn't working either. And a skin rash of big bumps and red skin appeared on my left leg a day ago. It was raw and I put bacitration on it. Why does a diagnosis and treatment take so long?

Sad

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05/08/2012 12:36 PM
redhairali
redhairali  
Posts: 3740
Group Leader

Hi and welcome to the group. It is so hard to get a diagnosis because there isn't just one test that says you have, or don't have, lupus. The doctors need to figure it out and is isn't always easy. Plus it is common to have more then one AI disease, so throw that it to the mix.

Prednisone is a quick fix that may help. Sorry to hear you are feeling so bad right now, hope you feel better soon.

Alison


05/08/2012 04:00 PM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Yes, you are asking all the hard and frustrating questions.

05/08/2012 05:03 PM
PixieBella
 
Posts: 9
New Member

Thank you... It is very difficult to take care of the house, family, go to school, and work too. I am very part-time working for myself and will just look for a few more accounts for income. My husband has a hard time with this so I don't talk too much about it. He is learning to become better responding to how I hurt. Thank God. It feels sometimes like my body is swelled to capacity and my muscles are losing strength in my arms. My ankles, knees, and all the little bones in my feets, hands, and shins, toes, neck, chest, back, shoulders, the glands in my neck hurt to touch them and my jaw bone hurts many times when I eat breakfast. My chest hurts on the left side when I breath in at the same time my muscles behind in my back hurt as well. It is getting worse. The tingling started in 04/10, but my pain in ankles, knees, feet, shoulders, neck and back started in 2005; In 2007, I started to have a bump on my forearm in my muscle and now it is half size of a hand ball, this year my left inner forearm has a bump growing faster over the past 4 months. The doctors just seem too busy or don't know what to do. My primary doctor referred me to a Rheumatologist who didn't even look at my charts or information before seeing me, was communicating with a nurse about another patient, didn't even ask more than 4 questions, sent me for more bloodwork then when I went back for my followup, he prescribed Lyrica, didn't even look at my records again, and when I asked about why I am getting the pains in my chest, he said, "I don't know about that". He said I don't think you have lupus but didn't ask any questions about my history or anything. So, I asked my primary who took the blood with the positive ANA, negative Lyme, to refer me to a different doctor. It is very hard waiting for help with this pain. Have you experienced similar????

05/08/2012 05:14 PM
mumeva
mumeva  
Posts: 6147
Group Leader
I'm an Advocate

Hi and welcome to this fantastic support site. Lupus is very hard to diagnose as it can mimic many other diseases and there really isn't a specific test to determine if it's Lupus or another disease. Lupus can affect everything from skin, blood, vessels, organs...so very hard to get a definite diagnosis.

Sounds like your doctor really isn't taking the time to sit and listen to you.....maybe you should see another Rheumatologist who is wiling to sit and listen and come up with a treatment plan for you. I think having a good patient/doctor relationship is the key. My Rheumy and I decide together what treatment plan is best for me and she sits and listens and I also go in with questions. I keep a journal and take it with me to my appointments as I usually forget things. Anytime you need to vent, cry or just to share or ask questions please feel free to post often.

Eva


05/08/2012 05:15 PM
redhairali
redhairali  
Posts: 3740
Group Leader

Some doctors just aren't good lupus doctors, even with rheumys. Some of us have made the rounds with doctors looking for one that would really listen to us. I hope the next rheumy is better for you.

Alison


05/08/2012 05:34 PM
PixieBella
 
Posts: 9
New Member

Also, I have had tremors on and off, tingling, numbness, when I lay on my left side, it feels like something cool is draining towards the left, a night ago, I woke up and had an attack or something, coughing, felt like I couldn't breathe (put cold rags on my neck, back of my neck and face) after 20 minutes, it worked and I went back to bed.

05/08/2012 05:37 PM
PixieBella
 
Posts: 9
New Member

on 9/2/2011, I thought and some doctors thought I was having a stroke. I drove to the emergency room and while I was at the check in, my right side of my mouth was wet like drool, I had tremors, a slight fever, chest pain, tingling, then when the doctor came in, I tried to talk and nothing could come out as if I couldn' gather it to talk. Very weird, it scared me, then I hyperventalated and started to tremer again.

05/08/2012 05:40 PM
PixieBella
 
Posts: 9
New Member

I have different areas in my muscles that get heated in a certain spot. And I have a very hard time remembering things when I need to. Sometimes, I have a feeling of being in a cloud like I just can't concentrate or talk.

05/08/2012 05:43 PM
Sharlene
 
Posts: 473
Member

Good for you that you asked for a different Rheumy. This guy sounds likes he's out for the money. As long as he keeps you sick, he still gets money out of you. That may sound mean, but I've been thru a lot of doctors. My grandmother-in-law got me all riled up once when she told me about a doctor who she'd never seen, stood in the doorway of her room, asked how she was, she said, "Not too good.", he mumbled something and sent her a bill. She took the bill to his office and told them off. I was in the hosp. then, and started questioning who all these people were. (Found out a lot of them were still in training. Oops.) But, yeah. I hope your new one gets you some answers soon.
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