I new on here and I am in the process of possibly being diagnosed with lupus. When I was 15 I had a major spinal fusion and shortly after my surgery I began having severe joint pain. My surgeon suggested I had arthritis in my hips and knees from my conformation. Several years later I mentioned having joint pain, fatigue, and "cold sores" to a GP and so they tested me for the herpes virus it came out negative but assumed it was still that, about a year later I returned for the joint pain and fatigue with out the sores and they said I have fibromyalgia and to take ibuprofen as needed. Well about a year and a half ago i began seeing a new GP because of an allergy I was having to formaldehyde in one of my lab classes. I was also having major fatigue, joint pain, and headaches so she drew an ANA it came out positive with a speckled pattern, but she said it wasn't positive enough for a diagnosis or treatment of anything. I started nursing school a few weeks ago and actually fainted at school so they brought me to see my GP. I told her I was having joint pain again and the headaches and that I couldn't even shop without needing a 4 hour nap afterward so she redrew the ANA and it had pretty much tripled and was a speckled pattern again. She also drew the rheumatoid factor, CRP, and DNA blood tests and they were all negative. My clotting factor came back abnormal so she drew a ASP on me and that was positive. I am being referred to a rheumatologist but can't be seen for 4 months! I hear that is common but am I really suppposed to wait that long trying to go through school and to get a for sure diagnosis? I do have the butterfly rash and sensitivity to the sun, I get blotchy all over in the sun, and really really tired. I'm just worried about my other organs if it is lupus. My lungs hurt when I take a deep breath and my kidney tests came back abnormal. Should I go back to my GP about the lung pain? I'm scared about the possibility of lupus but I'm even more scared they'll say they don't know what's wrong with me like they have been the past 8 years!
Written by
Dressagequeen
To view profiles and participate in discussions please or .
Hi, I'm sorry to hear you've been going through so much for so long, is it possible for you to contact the hospital and be put on the cancellation list?
Welcome to the forum and so sorry your having a lot of problems. If your lung pain worsens it's a good idea to go to your GP to get it checked out. Whilst there you could ask her to write to Rheumatology to see if you could be seen sooner!. Four months is a long time to wait I'll!. You've had the good suggestion to try for a cancellation and if all else fails you could ring Rheumy's secretary and ask to be seen sooner but it carries more weight from your GP. Best of luck , it sounds like from your results and symptoms that diagnosis won't be difficult for you. Keep us posted. X
I know exactly how you feel. I was told that I would have to wait 9 months to see a Rheumatologist, so in the end I went for a private consultation as I feared loosing my job. Definitely see your GP re chest pain and check if you are on cancellation list.
An ANA test gives an indication on whether a person may or may not have an autoimmune condition. It does not provide sufficient evidence to confirm a diagnosis of lupus. Further testing would be required by a rheumatologist to accurately identify the cause of your symptoms. To find out how lupus is diagnosed, you can download our free information pack here: lupusuk.org.uk/request-info... . The pack also contains a list of LUPUS UK contacts who you can chat with over the telephone; they are not medically trained but are there to offer support and understanding.
Extreme fatigue, headaches and joint/muscle aches and pains are common symptoms associated with lupus, to find out what other symptoms are associated with lupus please click here: lupusuk.org.uk/the-symptoms/
It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience.
We published an article on our blog on coping with oral and nasal ulcers which I hope you find useful: lupusuk.org.uk/coping-with-...
Being exposed to sunlight can sometimes cause a rash to appear on the skin. The face, neck, hands and feet are areas that are likely to be most affected due to being frequently exposed to sunlight. We published an article on our blog about ‘Coping with Light Sensitivity’ which you can read here: lupusuk.org.uk/coping-with-...
It is advised that you speak to your GP about the lung pain you are experiencing; your doctor may refer you to a physiotherapist or pulmonary specialist if required. We published a factsheet on LUPUS: The Heart and Lungs which you can read here: lupusuk.org.uk/wp-content/u...
You may be able to get an earlier appointment with a rheumatologist if you contact the secretary regularly for cancellations.
Wishing you all the best, please let us know how you get on.
Thank you so much everyone for all of your replies! I did return to my GP for the lung pain, they decided it it is either pleurisy or joint pain where my sternum connects to my ribs. They put me on 20mg of prednisone a day to see if I tolerate that better than the large tapering dose they did a few weeks ago. So far I feel great! I also heard back from the rheumatologist in the small town I live in, they said based on the clinical notes they received it was not sufficient enough evidence to see me as a patient because the only symptoms my GP listed were fatigue and joint pain. My positive antiphospholipid antibody test was never even mentioned to the rheumy. Now I'm concerned that I need a second opinion from a GP! I just don't feel like they have enough experience with autoimmune disorders to get me in with a specialist. Keep in mind I'm going to my university's health clinic for GP appointments so they probably don't see a lot of autoimmune disorders there. I'm just concerned because I told the doctor I get a butterfly rash when I'm in the sun, hot, or even nervous sometimes and I described the rash. He looked at the rash I had on my chest and said it was not a lupus rash because it was not raised. He also said lupus rashes never go away. That completely contradicts everything I've ever heard from people with lupus. Once again I'm not hoping for a lupus diagnosis but it would be nice to know what's going on! He said my symptoms are too varied to be lupus. For example, headaches, rash in sun and heat, joint pain, extreme fatigue and the positive antiphospholipid antibody are all too vague and varied to be considered autoimmune. But I feel better on steroids. What do you guys think? While I'm waiting for an appointment with rheumatology should I get a new PCP?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
The Vanishing Diagnosis - UCTD?
POSITIVE ANA but negative antibodies.
Forcing Diagnosis through deliberate Flares?
GP rant..frustration..no diagnosis 
Your route to diagnosis
