6 comments on “Resource Guide January 2013 revision 020513

  1. Nancy Dark on said:

    I want to know if there are any resources for people who are struggling to get a diagnosis? Or any suggestions?

  2. lorraine lopez on said:

    My daughter has lupus and is very depressed. Would like to attend a group meeting with other people to see how they cope with this disease. Her medications have her hair falling out and puffiness of the face and breakouts. She’s a young 26yr old with a 4 &5 yr old to take care of. Any support groups you can tell us about?

  3. Ernestina Stines on said:

    I was recently diagnosed with Lupus in March and have gone through aggressive treatment including chemotherapy. My Lupus is still flared even after all the treatment with health issues contumely rising (ITP and gastroparesis).
    My mother has Lupus and was diagnosed over 20 years ago. She is not well at all and has been critical in a state several times just recently.
    I need any kind of help available.

    Thank you,
    Tina

  4. leslie on said:

    I am looking for a rheumatologist that is not hung up on blood work. I have been struggling with symptoms more than three years. Each doctor is positive I have lupus and is gung ho to help me. Then my labs come back totally or almost normal and tney do not want to help me at all. Has anyone had any experience being seronegative? If so, who do you see. I am desperate for help.

    • Hi,

      I started out with sero-neg back in 2008 when everything first hit me. They assumed I had Lupus since my sister was diagnosed 2 years prior. I was with University Hospital in the beginning. They told me that since what I am experiencing isn’t testing positive for anything that it’s a good thing that I don’t have a diagnosis. So for 2 years I was severely depressed because something was happening to me and it seemed like there was no one that wanted to help. My insurance changed and I had to find all new doctors and explain what has been happening for the prior 2 yrs. But I ended up at Denver Arthritis Center and Dr. Gensler diagnosed me with SLE. It has been pretty good since I have been with him. I have tried 2 medications for treatment and now am moving to Benlysta infusions. He in my opinion is good and his medical assistant Stephanie is great with follow up. As for being someone who has searched for a answer and also working in the Medical Field it was very frustrating. I will say not to go to Dr. David Korman as with my experience with him-had no bedside manner and basically just said he doesn’t know about every question I asked. Dr. Gensler however, would answer my questions, slowly and make sure I understand before I leave.

      Hope this helps!!

  5. Can anyone recommend a hair salon in El Paso County that deals with hair loss that Lupus patients experience. It’s hard to just go anywhere some stylist don’t understand.

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