Need help desperately

Guys I'm 40 and my health has been decking for over a year now. It really started getting bad in Oct. I have had every test you could think of and seen numerous doctors. I have 2 doctors who say Lupus. I saw a Rhuemy yesterday. I left there so upset. He didn't take my symptoms seriously! All he did was ask me if I had anything wrong with my bone marrow, my heart or lungs! When I said no he said I have fibermialgia and gave me Lyrics and a 3 month recheck. I am convinced I have lupus. My ANA test was positive but a very low # it was 180. My symptoms are headaches pain in my eyes ulcers in my mouth and nose artheristis enlarged spleen rash on my skin severe stomach issues stinging in my feet blue toes red knuckles multiple kidney stones anemia vitamin d defincany dizziness balance issues confusion depression moody tooth decay extreme fatigue. What should I do?

6 Replies

  • Hi djpotter, sorry to read you are feeling so awful. It does sound like you have a lot of symptoms related to lupus. I know you have had lupus diagnosed in the past and having a positive ana can help with diagnosis. Unfortunately it can take a long time to get treated which is so frustrating. I had an awful rheumatologist who was so dismissive and I used to leave feeling frustrated and despondent. It put up with him for 4 years and the asked my go to refer me to another who is brilliant and half an hour away from where I live. Where do you live? It might be worth doing the same and look into who is working around where you live? Try and keep your chin up, hard though it is x

  • Hi djpotter

    Getting a diagnosis for Lupus can be a long, hard struggle. ANA is non specific for it, can appear in other illnesses and in healthy people too!. Don't be too despondent about your Rheumy as he's seeing you again in 3 months which is good. See if the treatment works or not. Your symptoms do sound like Lupus and if you develop others he may do the lupus bloods when you go again then. If you become very unwell you can always try to go earlier via a clinic cancellation. Hope I've helped and you feel better soon.X

  • Hi djpotter1975,

    I'm sorry to hear that you had a bad experience with your rheumatology appointment and I can understand your frustration with trying to get a diagnosis to satisfy your symptoms. If you are not happy with the diagnosis from the consultant then you are entitled to a second opinion on the NHS. You should discuss being referred to a different rheumatologist with your GP. It may be worth trying to get a referral to somebody that specialises in lupus. If you let me know whereabouts you live then I can give you information about any specialists that would be closest to you.

  • Keep at it! I'm in the same boat. It can be very frustrating. I had a very high Ana then a negative one. Of course the doc accepted the negative one but not the positive one. I have basically been treating myself as having an autoimmune disorder. Very very strict diet, rest when my body says so, a lot of water and eat an abundance of anti-inflammatory foods. Turmeric is great for inflammation. Very light exercise too. I'm sorry you are going through this, it sucks when no one believes us! As soon as I can I'm getting a second opinion so until then I can only be good to my body. This thread has really helped me cope a bit through the anxiety and depression. Keep your head up and keep pushing these docs. Only you know how your body should feel. Take care xo

  • Hang in there..In the past, I had left doctor offices in tears, or came home and cried..I started having symptoms in the late 80's, and didnt get a diagnosis until around 2001-2003, can't remember exactly...AND STILL had trouble with ne doctor denying my lab results were specifically pos from lupus.Doctors need to pay more attention to patient observation, and not so much on lab results.My current doctor told me you can test neg for some things on a test done on Monday, and have the same test done Friday of the same week and test pos..That is how fickle the antibodies are I suppose, or maybe just how inaccurate the tests are.Plus, like me, I am considered a mild case, even though it doesn't feel mild to me, but some of the test dont really show high,unless in a active flare..I have had MANYYY bad experiences with doctors over the years and understand where you are coming from, the frustrations, difficulties, and disappointment, plus the feeling of just giving up with doctors in general.

    Chart your symptoms. If you get rashes, swollen joints,or anything visual, take pictures on your phone if you have that kind of phone.That way you can show your rheumy/doctor, and have proof.Dont get discouraged. ..As mentioned above, see if you can get a referral to a different specialist. ..You wouldn't feel so awful just by chance, something has to be going on.I was told I had fibromyalgia at first also.I am sure I do.Usually it goes hand in hand with autoimmune illnesses. ..But dont let one persons opinion define you or the fact that you need answers to what is going on with your body..(((hugs)))

  • . I have most of your symptoms and was told I have Lupus. My rheumatologist said I have Sjougrens, a form of Lupus, which is treatable, not curable. . He said it takes 7 years to diagnose. It has taken them 12 for me.

    I have poor balance, trouble walking without a cane, weakness, numbness, tingling sensations, arthritis, etc, etc. You need to see another rheumatologist.

    You are getting a brush off. He should be doing testing.

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