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Thread: still no answers

  1. #21
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    I for one, am I whose tests came out negative, but my Dr. believes I have lupus anyway. He thinks I have had it since my teens and I am 64 years old. The Drs. try to relieve my symptoms the best they can. You must accept the fact that you may never get a formal diagnosis. My Dad got a formal diagnosis, but as I said before I never did. Also, I agree with Say Suzie, chest pains are nothing to fool around with. You need to go to the ER or get ahold of your Dr. pronto. There is an answering service that can get you in touch with your Dr., or the Dr. on call.
    Last edited by Moonbeam; 08-19-2014 at 06:09 PM.

  2. #22
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    Trust me, I get it. But the diagnosis is just a name at the end of the day.
    I just returned from an AWFUL rheumy appt where I was rushed and treated like what I was saying was trivial. To put in example of how rushed he was - he only did 2 of the FM pressure points. I was told my blood tests (ana & dsdna)were false positives after saying he could see my malar rash. I received no diagnosis or possible answers. I received no options for treatment besides aspirin and told to "get better". Its angering, and frustrating. At this point, I dont care what they label it as... I just want some help managing my symptoms.
    I had to really PUSH him at the end to agree to prescribe something (plaquenil) but only IF I dont magically get better in 2 months. I felt like he thought I was drug seeking (maybe?)... I had NO idea anti malarials had such street value! (*sarcasm*). However, at the end I was relieved he agreed to that - thats how bad I felt about the whole thing. Even then, I know he cannot keep that promise because he's overseen by an attending.

    Do push your doctors for treatment of your symptoms. Stand up for yourself. Do not push the diagnosis though.

  3. #23
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    sorry to hear your appointment went so badly. i can imagine that being really frustrating when you wait so patiently for time with a rheum. my doctors have said they'll retest in a few months but until then there's nothing they can do. i'm getting more and more fatigued and in more pain. i am trying to find people who's pain behaves like mine flitting from one area to another every second or so and it's quite rare although the lupus sites do say that this is typical of the pain SLE sufferers exhibit. i'm trying my best to detox at the moment but i'm seeing no improvements

  4. #24
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    Alicake, I find the Drs. are absolutely paranoid when it comes to prescribing pain meds. They must think we are all addicts. They are scared of the feds who, I believe, randomly pick Drs. offices to come to and check up on their records to see how much pain medicines they are prescribing. Therefore, some of us don't get prescribed the adequate amount that we need to get relief from the pain we have. They usually just prescribe me enough to take the edge off of the pain.

  5. #25
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    did there seem to be a trigger for lupus in you guys? for me it was an allergy or sensitivity to a dental material, i'd shown no signs or symptoms for 21 years but my immune system was hyperactive and i believe this is at the core of my problem.

  6. #26
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    I think accumulated stressors were the trigger for me, not just one particular event.

  7. #27
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    what were the stressors in your case and how did the disease present itself? i was under extreme stress due to a reaction to the teeth and these 2 factors probably caused it for me. there's a lot of people posting online about curing themselves after finding their triggers and detoxing but these don't seem very reliable

  8. #28
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    My stressors were a delay in getting treatment for extracting my wisdom teeth (no money to have them removed), a diagnosis of mucious colitis, and trying to complete two difficult, accelerated college level summer school classes while all this was going on. Also I was planning my wedding which was a stressful event for me because it was a large affair. I can't really get a grip on how the disease presented itself. I just kept getting sick all the time. One virus after another and then the colitis. I was around age 19, looking back, when lupus started rearing its ugly head.
    Last edited by Moonbeam; 08-22-2014 at 11:09 AM.

  9. #29
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    exhausted today and the malar rash has popped up again. i'm reading that the fasciculations can be related to CNS lupus and this could also explain my dizzy spells and some other symptoms such as odd neuro sensations of cold spots on the skin

  10. #30
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    I hope you get some answers in the future, but if not, please accept the fact that you may never get a formal diagnosis.

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