Really need some answers :(

Hey everyone- sorry if this seems like a long post. The past few years I have not been feeling well- fatigue, joint pains, couple of miscarriages etc. however on my last miscarriage (last oct) I haven't been myself- pains in joints, flu like symptoms, really bad fatigue, rashes, patches in my mouth. Doctors ran bloods all normal apart from my esr and crp which has always come back raised. All my antibody tests are negative and rheumatologist thinks it's CFS (sigh) which I know it's not! I'm at my wits end, is it possible I may have lupus but nothing is showing up yet?

Any help would be much appreciated

X

9 Replies

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  • I have APS. I don't have Lupus.

    I also a problem with fatigue. I have been given Provigil for that and it helps a lot.

    For the antibodies, when i saw a lupus specialist she didn't check only the antibodies she also looked at my symptoms. The antibodies tested doesn't tell the all story.

    Last i have starred to get plaquenil and i have since some flu like syndrome... Pain in the throat and caught.

  • Did the Rheumatologist check for Hughes Syndrome (Sticky blood). This can cause miscarriages and is also common in people with Lupus. Read up on it and see what you think. Check if you have been tested. Treatment could stop the miscarriages. Also it took 18 months for lupus to start showing positive in my bloods after start of symptoms x

  • I'm being tested for Hughes Syndrome /APS just now having had a couple of miscarriages many years ago and with symptoms that tarry now. I believe there are three tests - the one my rheumy ran on me was the Lupus Antocoagulent but he took lots of others too - I think this was the only one that hadn't been checked. It sound more likely for you though. I don't have Lupus - more an undifferentiated connective tissue with RA.

  • Hi t, hope your new rhuemy can come up with definitive diadnosis. Its taking such a long time to find out what you need to deal with. Hope you are feeling a little better today. Babs x

  • Thank you so much everyone- my friend did mention Hughes syndrome to me but wasn't sure it would cause all these symptoms- I am going to ask the rheumatologist if he can test me for it :)

  • You poor thing,it is so frustrating ,you just have to keep on at your doc , try a different go in your practice if that is possible- hope you feel better soon chin up these are caring docs out their , we just need to find them.

    In the end I had to take my partner with me and he told the docs how bad I was, that did the trick, just started my first course of AZATHIOPRINE so let's hope it helps

    Good luck

  • Hello Freedom....Sorry to hear about your miscarriages and what you've been going through. I have been having your same issues for years, but when it became unbearable, I luckily found a doctor who is knowledgeable about Candida overgrowth. He did bloodwork on me and found Candida overgrowth and leaky gut to be the problem. I have since been on a special diet, strong probiotics and anti-fungals. I am feeling much better. There are many articles on Candida overgrowth and leaky gut on the internet. Check it out. It sounds like this may be your problem.

    All the best!

    Pattie

  • Oh BTW, leaky gut can cause auto-immune disease because toxins escape into your bloodstream. It can be reversed with the right diet and treatment.

  • Sorry to hear about your losses. You've gotten some good advice out here, but I wanted to add that it took several years before I got an accurate diagnosis of lupus. You absolutely must keep pushing your doctors. Remember, you are the expert of your own body and know when something is wrong and when the doctor is off in their medical opinion. I've been reading of keeping a medical journal and I like the idea. Second opinions are always advisable. Best of wishes to you

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