serand4

I give up on this Lupus thing

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I've been fighting for a year to make any headway with this Lupus diagnosis. I have numerous symptoms but I don't have the numbers so therefore, I'm unqualified. I get hospitalized but since the numbers don't show up, I just look like the junkie off the street. And that's funny too because I receive far too much medication already.

In the next month I will be seeing a Pulminologist, cardiologist, gastrologist, psychiatrist, and my primary. Somehow, I just don't have much faith. All I know is that a good portion of the time I feel like I have an alien inside me with a butcher knife and the fibro just makes the neurolopothy in my legs seem like the never ending burning bush. No pain medicine works and I swear a lot of it causes my migraines.

Anyway, I'm just expressing myself. If I ever get any diagnosis, I'll share. In the meantime, I think I'll hang back and read your thoughts and ideas. I get my best information here.

Take good care.
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  1. Linda From Australia's Avatar
    Hey, just thinking about you.
  2. serand4's Avatar
    Thanks Linda, I've actually been thinking about you too and hoping things are going well. The depression that has accompanied this disease, whatever it is, has been so debilitating. I've started hearing voices at night, fortunately, not the type that tell me to hurt myself, but they frighten me. My doctor thinks it might be because I'm changing medication and I'm hoping he's right. I hadn't heard anything for a couple of weeks and then last night I woke up standing by my bed terrified. I had no idea where I was or who I had been talking to. Yes, I know it sounds totally crazy but that's exactly how I've felt lately -- crazy! Today I finally went downstairs and worked out for a short time and I've been eating really healthy. Oh, and my tachacardia (super high pulse) has been off the charts so I've cut out a lot of my caffine sources. I'm far from suicidal but I definitely do not like the life I'm stuck in right now, but I'm sure I have a lot of company on that one. Anyway, take very good care Linda. Please feel free to give me an update on you. The best way to get my mind off of me is to care about someone else!
  3. Nonna's Avatar
    It's overwhelming having to go to so many different specialists. I asked each one to please send a status report to my GP. It took time and effort on my part to make sure all the reports got there. Then I sat down with her and we talked. I helped a lot.

    Hugs and Good Thoughts,
    Nonna
  4. Trinity's Avatar
    Dont give up on the tests. I too tested positve ANA three times, high titers, and also for Sjorgens. My dx-dna came back negative( which alot of ppl will show negative). I requested a biopsy and that came back positve for SLE. The Rhuemy was trying to tell me that I didnt classify as Lupus until the biopsy report that she requested. When I first met her, I had all of my blood work with me and I had a very noticeable Malar rash.

    I can tell you though, prior to finding out, I went to so many Dr.s (my head was spinning). The other frustrating thing was the Dr.s look at you and say, " you dont look sick, you dont look like you have lupus," Yes, I wasn't happy about the confirmation. However, I sure did feel like saying, Nah...Nah...poo.poo, I told you so! I have a co-work that has lupus, and she's had lupus for 10 years. She said, she had so many tests, all of them came back negative except 1. Alot of it was based on clinical findings. Honestly, if it wasnt for her telling me about the biopsy, I would be going to more Dr's too.

    The best of luck to you.
    Trinity