Waiting to see the rheumatologist and I'm terrified

DreadSavageDreadSavage Member New Member
Hello, I'm 34 and had some blood tests back in December. In January my doctor said it looked like my body was fighting an infection, which could've been the Pneumonia/sinus infection I was diagnosed with 2 weeks prior to the tests. Given my history, symptoms and results, she referred me to a rheumatologist. My appointment isn't until April 2nd and I'm just wondering what to expect. This journey has been a long one, which doesn't fit in one post lol! But my GP thinks it could be Lupus and whatever this is has completely derailed my life over the last 2 years. Is there anything I can do or share with my rheumatologist to help him figure this out? I can't live like this anymore and I'm tired of being ignored. Thank you in advance!

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  • DreadSavageDreadSavage Member New Member
    Thank you so much! I always try to be very thorough with doctors but many take it the wrong way. The day I had my blood tests my GP asked why I didn't say anything sooner and it's frustrating to tell doctors, over and over, that I have. Everything was always stress, depression or they don't know and I just have to deal with it. I'm sure it's a combination of not having much knowledge on the subject and treating other patients who really are okay but think they aren't. I've always been a "sickly" person, even as a small child. I got Shingles at 17, which was supposedly stress related. The joint issues, brain fog, fatigue and skin issues came shortly after. Over the following years, those issues got worse and I gained some new issues to add to the list. I'm sure it does look like other things to many doctors and they think there's no possible way I could even be alive or somewhat healthy if it were Lupus. But at the same time, I can't understand why none of my doctors went the extra mile. Because I was so sick all of the time, many just looked at my history, went over symptoms and handed me a prescription without even an x-ray. Ugh, this is so frustrating! Is it common to do more blood tests or having imaging done on the first visit?
  • briannawelbornbriannawelborn Member New Member
    They should run a full lupus panel if you tell them that's what you're concerned about. I get that! I've had to beg doctors to go the extra mile. I usually have to study up and ask them a ton of questions. It took a long time to get diagnosed. I have both lupus and Lyme disease and they both interfere with one another and have similar symptoms. When I was 14, my ANA went positive and I was finally diagnosed. They wouldn't diagnose me until my ANA aligned with all my other symptoms. After I was diagnosed they put me on Plaquenil, Neurontin, and steroids. After a year on Plaquenil, I already had retina damage. After two years on Neurontin, I could barely function mentally. Two years ago I decided personally to stop all medications as they were making me worse, not better. My doctors didn't agree with my decision. Since I've stopped all meds, I can't get a rheumatologist to actually follow my lupus. I'm having to see a primary care doctor who believes in holistic treatment. She monitors everything for me and gives me the best vitamins and treatments for my lupus by following my blood results. And I'm preparing to treat my Lyme soon. Lupus is one of those things thats hard to diagnose, it's hard to live with, you can't really treat, but you need to know if you have it. 
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