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An_254267 posted:
Hi am 48 yrs old for the last 5yrs i have seen every specialist i could i have all the symtoms of lupus from face rash to hair loss joint pain that is like a burning feeling fevers mouth sores today i saw an endo because they thought it could be my thyroid it was not so this doctor told me to go to nyu which is a teaching school because he thinks it is lupus to i am so confused on which way to go i feel weak every day and ashamed of this rash and feeling sick almost everyday breathing is the worst has someone gone threw this every blood test is neg please help me thank you i am very worried about my breathing and everything else that is happening with me what else can i do to find out what i have i feel like i am crazy

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lupus concerns regarding neg blood tests from many doctors but i have all the signs but they keep telling me until it shows in my blood work there is nothing they can do i am getting worse after 5 yrs i am really worried and just dont know what to do
  • a doctor i saw today said to try a teaching school
  • concerned about what lupus is doing to my orgins
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leecat41 responded:
I have been going through the same thing since 2004. My rheumatologist is treating me for "lupus suspect" because I have never had a positive ANA. I've had nearly all the symptoms from hair loss, rash, fatigue, bleeding gums, etc. But I've never had a positive ANA. Chin up and don't give up. You have to keep fighting.
To do what is right is not always easy, to do what is easy is not always right.
 
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scaredlisa replied to leecat41's response:
ty i wish you luck to
 
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iaintnoquitter responded:
My ANA was not detected but inflammation all over my body was and I have every symptom of Lupus plus I was diagnosed with Inflammatory Arthritis. My Rehmatoligist said my body is in the inflammatory process. I've been staying with a friend & for 1 yr I haven't been able to work. I just cant do it! I've applied for SSI & waiting for help from them. In the meantime my living arrangements need to change. My friend is a male & he needs his space. I'm trying to find out out what is out there for me right now for help. I'm very sick with lumps all over my whole body.
 
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qianaa responded:
I am sorry to hear that you are having these issues. I first would suggest to make sure that you are seeing a rheumatologist and not a regular doctor, it wasn't too clear in the comment, but yes, as all the others replied your ANA is not the only thing that can show you have lupus, so the other symptoms are valuable, blood count for white and red cells, imflamation, low vitamin D, joint pain etc...i am a patient in NYP and they have very good lupus clinic there. When I first got lupus i was told by doctor that I had RA and then I was spent to a specialist/rheumatologist who looked at all of the test that they ran and told me straight off that I had lupus after she saw all the signs on the test that they had run and later she ran an ANA test herself but without the ANA information she already said that I had lupus...so I suggest that you go to specialist and let them work on it The specialist I had in the Bronx was very good also, I am not sure of your location, I ended up with the NYPres doctors because I had a flare and was there for about a year, so I stay with the doctors I had in the hospital now, since they were extrodinary! Best of luck


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