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Frustrated with Doctors

Discussion in 'Personal Stories' started by cathy kent, Oct 28, 2019.

  1. cathy kent

    cathy kent New Member

    Two years ago I came back from Costa Rica. A week after coming back I found myself not able to climb in my bed, dress myself, take my cloths off. Pain in my arms and legs. Lost all Strength in my hands. If I bent down to the floor I was unable to get back up. I had extreme Fatigue. I don’t take my temperature to see if I have a fever.
    It started affecting what feels like like my lung shortly after. I have pain in my back where the outlining of my lung would be. Six months later I started having pain in my hip. Things started to get better, not gone away but better. Then it keeps coming back.

    I went to see a rheumatologist he did blood work, that test with needles on your muscles. My ANA was positive and the rest of my test were normal. They said I have Fibromyalgia because they’re is not inflammation. I have never had any if the pressure points they say you have.

    The last few months I started having another flare up. Not as bad as before but different. Lung is still effected, sleeping at night is impossible because the pain in my chest and back. I have had a rash on and off scabs over quickly on my arms and back. I remember years ago having a red face and everyone asking if I was ok. I was feeling fine so never went in and it went away. I have swollen in the middle of my chest in the joint, you can see it raised and is uncomfortable and also the ends of my collarbone are swelled with no pain. My little finger knuckle has some kind of a rheumatoid nodule, it’s painful when pressed. The fatigue is really bad right now, I have nausea when I eat and my lung in my back is painful 24/7. When I get up after sitting for a while I’m slummed over walking and knees are bent, then slowly I can straighten up my body.

    A year ago I had a repeat blood test that showed Negative ANA, recently a CT scan of my chest that showed nothing even though you can see I have inflammation on the collarbone and chest. I stopped going to the doctors for a while out of frustration. My after I’m having a hard time again my family is making me go again, I went to the ER that’s where a got the CT scan that showednothing and blood CBC came back normals, they didn’t test the ANA. I went back to see my doctor the other day she wants me to see anythingRheumatologist, she thinks I have lupus she said. I’m so confused and frustrated. Does anyone have any input?
    lung shortly after. I have pain in my back where the outlining of my lung would be. Six months later I started having pain in my hip. Things started to get better, not gone away but better. Then it keeps coming back.

    I went to see a rheumatologist he did blood work, that test with needles on your muscles. My ANA was positive and the rest of my test were normal. They said I have Fibromyalgia because they’re is not inflammation.

    The last few months I started having another flare up. Not as bad as before but different. Lung is still effected, sleeping at night is impossible because the pain in my chest and back. I have had a rash on and off scabs over quickly on my arms and back. I remember years ago having a red face and everyone asking if I was ok. I was feeling fine so never went in and it went away. I have swollen in the middle of my chest in the joint, you can see it raised and is uncomfortable and also the ends of my collarbone are swelled with no pain. My little finger knuckle has some kind of a rheumatoid nodule, it’s painful when pressed. The fatigue is really bad right now, I have nausea when I eat and my lung in my back is painful 24/7. When I get up after sitting for a while I’m slummed over walking and knees are bent, then slowly I can straighten up my body.

    A year ago I had a repeat blood test that showed Negative ANA, recently a CT scan of my chest that showed nothing even though you can see I have inflammation on the collarbone and chest. I stopped going to the doctors for a while out of frustration. My after I’m having a hard time again my family is making me go again, I went to the ER that’s where a got the CT scan that showednothing and blood CBC came back normals, they didn’t test the ANA. I went back to see my doctor the other day she wants me to see a Rheumatologist, she thinks I have lupus she said. I’m so confused and frustrated. Does anyone have any input?
     
    Last edited: Oct 28, 2019
  2. Robin Jackson

    Robin Jackson Member

    Had you had a lot of unprotected sun exposure in Costa Rica?
     
    cathy kent likes this.
  3. cathy kent

    cathy kent New Member

    Yes I did.
     
  4. Robin Jackson

    Robin Jackson Member

    Sun exposure increases disease activity in Lupus and other AI diseases. Unfortunately, it can take some time for a dx. You may want to ask about a biopsy on the rash. I have DLE and was dx'd by biopsy. My ANA is borderline positive an all other panels are negative.
     
  5. cathy kent

    cathy kent New Member

    Do you have to have the rash when they biopsy it or will it show from the skin if the rash is present or not at the time?

    I’m going on two years. I just dread going to the doctors again.
     
  6. Robin Jackson

    Robin Jackson Member

    My dermatologist actually biopsied the oldest spot, which was just a small scar.
     
  7. cathy kent

    cathy kent New Member

    Wow, does the biopsy diagnose lupus? I should see a dermatologist for the biopsy then.
     
    Last edited: Oct 30, 2019
  8. Robin Jackson

    Robin Jackson Member

    Yes. I did not have any other positive labs or symptoms other than the skin lesions.
     
  9. cathy kent

    cathy kent New Member

    Thank you for your help.
     
  10. Robin Jackson

    Robin Jackson Member

    You are very welcome!
     

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