New to here

lcampidonicalcampidonica Member New Member
edited February 2019 in Support
I’m fairly new to lupus. I was diagnosed 2 years ago. I had a horrible rash on 2 of my fingers on my right hand and was experiencing joint swelling and stiffness in my hands. I have been seeing a rheumatologist, but don’t really feel like I am getting the attention that I need...?  If that makes sense. I feel like they are going through the motions....regular blood tests, meds, checkups every 6 months. Maybe that is what is supposed to happen. I really don’t know. I have a general diagnosis of SLE, but is there more?  Can they narrow it down better?  A friend just sent me a link to an article about the relation between certain gut bacteria and lupus. I have gut issues. I emailed my specialist and my PCP, but no one has gotten back to me. I’m so frustrated.  I know what I need to do. I need to press them and advocate for myself. I just wonder if it’s the norm to just get blood tests and go see them every 6 months?  Are there other tests I should be asking for to try and narrow it down more?  I just don’t know. 


  • isisliconaisislicona Member New Member
    I was diagnosed with lupus back in November, I have yet to see a rheumatologist I was also told by my ER care team that I should see a general physician first to keep track of my symptoms and changes for a few months and then I’ll be transfer to a reumatologist, I had only have one rx of steroids (6 day rx should last for 1-2months). I know how you feel. Soon i should be getting a biopsy because I have a lot of swollen lymph nodes and finally meeting my rheumatologist. 
  • teskegteskeg Member New Member
    Unfortunately even when they diagnose you they  cannot take away your symptoms. Those we unfortunately have to learn to live with. I had been diagnosed about 7 years and had been on several trial meds from injections to pills. Now I have been on leflonimide, rayos(prednisone); thyroid meds(hypothyroid: another autoimmune disease. I take 9 meds in all. I understand your frustration. The doctors really are not there to sympathize. I guess that is why there are sites like these. Anyway, stay strong and be as proactive as you can because again you are on the doctors mind for a very few minutes and then they are on to the next patient. Not true for all, I am sure, but I think that the majority just don’t have the time to involve themselves completely with you and give you the attention that you really need. The difficult part about lupus is that it is a invisible disease mostly(SLE) so people don’ t see that you are sick. They cannot see your pain, gut issues etc.and often some people don’t even want to hear about it. Again, it is great that there is compassion from people on these sites. Good luck to you.
  • AlfoAlfo Member New Member
    OMG. Sometimes I feel crazy! In the last november , my analysis was positive for ANA, 1:640. And I Saw a rheumatologist, and she told me that my analysis was positive but she saw me fine, because I didn't presenting any synthoms. But she told me that I need to realize once a year the same analysis. But If I will show one of the synthoms, or an allergy I need to do the same analysis again. Last week I have a stomach ache , and I went with a general doctor, but with this analysis she told me that she can't send me any medication. Two days after, it starting to pain my hands and  one day after, one of my finger will swelled, and I talked with my allergist and with other doctor and they request to me again the same analysis. And I feel frustrated, because the rheumatologist, told me that I'm fine. Why the doctors cant saw me again like any patient? . For me was very common felt tired, sometimes I think that I'm tired because I wake up very early, and I always try yo think that It's normal, I have 27 years, and I ask myself , How feels a women with 27 years? I'm fine? Not? I dont  have yet a diagnosis.
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