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Rheumatologist, possible lupus, please help?

Oct 06, 2014 10:18 PM

I saw a rheumatologist for the first time two weeks ago, she mentioned possible lupus and I had blood tests right after at the hospital, testing my ANA and many others, I still haven't heard about results and my next appointment is in 6 weeks, do I wait until then for my results, do I ring up? I'm unsure how to find out about my results? x

Oct 06, 2014 10:50 PM

I would call the doc. and ask about it I couldn't wait

Oct 07, 2014 9:37 AM

I would call to and ask. 6 weeks is to long to wait.

Oct 07, 2014 3:56 PM

yeah I think so too, I'll try tomorrow. thanks guys x

Oct 07, 2014 7:36 PM

anytime:-) I'll be thinking about you, and praying for good news.

Oct 07, 2014 8:21 PM

if my ANA came back positive, do you think they would have contacted me by now? I know this sounds awful but I'm sort of hoping it's positive so that I will finally have a confirmed diagnosis to this hell I have been experiencing, and hopefully some treatment.. but I just have the feeling it will be negative 😔 I guess I shall find out tomorrow.. xx

Oct 07, 2014 9:51 PM

Sometimes the tests won't show a positive unless you get them done when you are having a really, really bad flare. I've never been able to get my results over the phone, I'm always told to make an appointment if I want to know. I hope you are able to get answers soon.

Oct 09, 2014 9:51 AM

good luck, I remember all to well going through test after test for over 4 years and finally got the diagnosis SLE. hopefully you'll know what ur dealing with and start treating it

Oct 09, 2014 1:55 PM

I just went and had blood tests and X-rays after months of oain in various areas. ankles, neck, back, hip. I heard lupus gives a red cheek appearance and I do not have that. if I'm on my feet more than an hour or so I can hardly walk some days. makes it hard to work.

Oct 09, 2014 7:40 PM

I too suffer with severe pains in my joints and am unable to walk much distance atall without a wheelchair. my hair is falling out, I get the red cheeks and nose, especially in sunlight. I'm constantly fatigued, I can sleep 18 hours without waking up or thinking twice about it. I get mouth ulcers, dry eyes, concentration and memory issues. headaches. the list is endless.. does anybody that's been formally diagnosed with lupus think this sounds like lupus? I appreciate your comments Thankyou xx

Oct 10, 2014 3:43 AM

I have had LUPUS for ten years and sometimes the test are inconclusive. Hang in there, and the rash on the face happin in just one type of lupus. There are many different types affecting different parts of the body. If it's lupus it's going to be a long road ahead for you. If you have questions you are welcome to ask me.

Oct 10, 2014 5:01 AM

Thankyou very much @justme xx

Oct 10, 2014 5:01 AM

Thankyou very much @justme xx

Oct 10, 2014 5:01 AM

Thankyou very much @justme xx

Oct 10, 2014 5:01 AM

Thankyou very much @justme xx

Oct 13, 2014 2:13 PM

taylor26 - did you get your results? Hope you are OK.

Oct 15, 2014 8:48 PM

@lbravo Thankyou for asking, I hope you're doing well. I had my bloods taken at the hospital a couple of weeks ago. I went to the doctors yesterday for something unrelated and asked for my results because I was yet to hear anything about them, he told me he was unable to access them and to wait until my next rheumy appointment. today I received a letter from my GP asking me to come in about my results, now I'm a tad worried because I know more often than not, if your results are normal you just get a letter telling you they're normal, as I have had before. so I'll be visiting him and hopefully getting some answers. I'll keep you updated,Thankyou :) x

Oct 15, 2014 8:48 PM

@lbravo Thankyou for asking, I hope you're doing well. I had my bloods taken at the hospital a couple of weeks ago. I went to the doctors yesterday for something unrelated and asked for my results because I was yet to hear anything about them, he told me he was unable to access them and to wait until my next rheumy appointment. today I received a letter from my GP asking me to come in about my results, now I'm a tad worried because I know more often than not, if your results are normal you just get a letter telling you they're normal, as I have had before. so I'll be visiting him and hopefully getting some answers. I'll keep you updated,Thankyou :) x

Oct 16, 2014 6:34 AM

rang the doctor, who told me my blood results were locked but that they want me to book even more blood tests and I've had yet more referrals, feel like a frickin guinea pig with no answers :( xx

Oct 16, 2014 6:34 AM

rang the doctor, who told me my blood results were locked but that they want me to book even more blood tests and I've had yet more referrals, feel like a frickin guinea pig with no answers :( xx

Oct 16, 2014 10:35 AM

Welcome to THE WAIT. It takes a long time to diagnose Lupus because they need at least 4 (and potentially more, depending on your doc) symptoms that suggest the disease. from blood tests, in my experience, they look for positive ANA (anti nuclear antibodies), positive Smith antibodies (indicates Sjorgens disease), and other indications, such as organ involvement. From an MRI, they can see synovial inflammation and other rheumatic disorders. Usually, they will want to get a full picture of your condition before they decide to treat with meds, as they are quite potent and work on immune factors. Basically, with Lupus, your body is attacking itself, and that has to stop; as a consequence, the meds lower your ability to fight off infection. I have RA as a consequence of Lupus, as well as Fibromyalgia (that frequently comes with the territory). Lupus is no more a death sentence than life is. If they catch it quickly and medicate you properly, it can simply go back underground and cause you no more severe permanent damage - so don't worry too much. It sounds like your docs are being very conservative and not jumping to conclusions. Try not to agonize over it too much while you wait. Go to a reliable source (like lupus.org or the Mayo Clinic site) to read up on it if you want. Be wary of forums - they are good for support but can sometimes scare you unnecessarily. Hang in there and let us know your results!

Oct 16, 2014 10:38 AM

I've been non stop reading about it, of course I don't want to have lupus but in a way it would be a relief just to finally put a name to how I've been feeling for so long, Thankyou for the support, I'll definitely keep you updated!xxx

Oct 16, 2014 10:38 AM

I've been non stop reading about it, of course I don't want to have lupus but in a way it would be a relief just to finally put a name to how I've been feeling for so long, Thankyou for the support, I'll definitely keep you updated!xxx

Oct 21, 2014 12:23 PM

have you been tested for Lyme disease? I have had it for 2 years and experience many of the same symptoms. I was told by two doctors that I was negative until I went to a doctor that did a test other than the western blot test.

Oct 22, 2014 3:23 PM

call your doctor girl cause I have to call mine all the time because they will never call me about any test results. I would seriously call them. good luck sweetie

Oct 23, 2014 7:38 AM

@lululisa yes I have, I don't have Lyme disease, I hope you get better though, sending love. x

@graceg I did Thankyou Hun but they told me my results were locked and I have to wait for my results at my next rheumy appointment on the 6th November, but I've just come back from the doctors after having more bloods done because that was requested, and I haven't even had my last results!! it's silly. Thankyou hunny, sending well wishes to you!!xx

Nov 05, 2014 9:34 PM

The latest blood results showed that I have a vitamin d defiency, does anybody know what could cause this? I have the hospital tomorrow so I shall enquire more then, and get the results back of my initial bloods I had taken a month ago!! Wish me luck! Hopefully I get some answers x

Nov 06, 2014 6:54 AM

I saw the rheumy this morning and was given a new diagnosis of fibromyalgia. Should have seen it coming! Been put on pregabalin x

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