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Discussion Starter · #1 ·
For many years, since I was about 5 (I'm now 30), I have suffered from joint pain in my knees. This has gradually increased to be my elbows, wrists, hands, fingers, ankles, feet and toes. The pain is really, really intense - I could easily believe I've broken the joint, and is a deep aching feeling, although it can be accompanied by a sharp moving pain. It often feels as if the pain repeatedly radiates outwards really quickly. Usually if one side joint hurts, so does the joint other side. The pain is worse in the evenings and at night, and usually during the daytime I am left wondering why I was in tears due to the pain the night before. If I haven't slept well then my joints will hurt during the daytime, and they always feel stiff first thing (my bones will constantly crack too), but quite often the pain has gone when I wake up, only to return by about 5pm.

My joint pain is my main complaint, but I also have spent the past decade (if not more) suffering from: IBS, frequent severe headaches, migraines, cold intolerance, ear infections, sore throats, fatigue, depression, loss of weight, itchy skin, urinary tract infections and mouth sores. If anyone is going to pick up a cold or a bug it will be me and it will last for ages. Also, recently I've started getting pins and needles in my hands and feets (plus occassionally in my face), I also bruise really easily and have really bad reactions to insect bites.

My GP did several blood tests which came back saying my ANA was 1:80 and speckled. My GP said that she thought I had Lupus (which I'd not heard of before), and confirmed a referral had already been sent for me to see a rheumatoid specialist. However, my specialist (so far) has been the least sympathetic person and seemed to have no interest whatsoever in listening to anything that was wrong with me. She seemed very dismissive of Lupus, ruled out Fibromyalgia and told me that she'd do some more tests, but felt everything would come back negative as some people just had unexplained aches and pains.

What I really want to know is: Does this sound like I could have Lupus, or am I better off giving up with my specialist? I am quite open to anything else causing these problems, but really can't believe that I can be in so much pain and so tired etc., so much of the time and it just be a figment of my imagination.

Please can anyone give me some help or advice. Thank you.
 

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Hello and :welcome: to the forum,

A good deal of your symptoms are indeed very typical of lupus and your GP was quite right to refer you to a specialist.

Unfortunately some specialists are a little "bloods obsessed" and an ANA of 1:80 is not usually considered significant. The titre of ANA will double each time. Some rheumies will consider 1:160 and more often from 1:320 upwards.

I would advise trying to get re-referred to a "lupus-specialist" rheumy as not many rheumy's are specialised in auto-immune diseases and will absolutely not think beyond obvious bloods. I think that one of the other problems is that when we say it hurts that is very relative and possibly vague to a doc as they hear it for anything and everything (not making excuses here). I have found that explaining what I can't do due to pain helps them understand the extent of it.

If you would like a recommendation for a good specialist in your area, there is a "find a lupus doc" section here on the forum.

This is a link to ACR criteria for lupus. It might help you to situate your symptoms and also to see if there are any other things that you haven't considered might be linked.

http://www.thelupussite.com/forum/showthread.php?t=33123

bye for now,
Katharine
 

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Welcome to the site PJW.

Getting a diagnosis can be a real trial. In some cases it is just a waiting game for some significant symptom to appear that finally leads to a diagnosis. It never hurts to get a second opinion though.

Take care,
Lazylegs
 

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Hi PJW,

Welcome to the lupus site.

Katharine and Lazylegs have given you great advice

I thought you might like to read this link. It is part of this web page.

http://www.uklupus.co.uk/lupus1.html

Many members have had to go threw several rhumeys till they find a good one. A second opinion sounds like a good idea.

The members here are very nice and will help you with their experiences dealing with lupus and some with the long journey to getting a diagnoses.

Take care,
Lyn
 

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Discussion Starter · #5 ·
Thank you for your advice; it's all appreciated as I am so confused at the moment.

I've just received a letter my specialist sent to my GP and she has got several things wrong and not even mentioned other things that I told her about. Then again, since my specialist was able to see me, examine me arrange blood tests within ten minutes, I suppose it isn't surprising!

My specialist has said she is going to test me for double-stranded DNA, ENA screen and complement levels as well checking my thyroid and celiac. Do these tests need to come back as positive to be diagnosed with Lupus? Only my specialist has ended the leter saying when the results are available she'll review me again if necessary, and I really get the feeling she won't give me another appointment. The letter states that in her opinion I suffer from chronic widespread idiopathic pain and depression.

I'm going to go for a second opinion, but can anyone advise a good specialist to see? I'm prepared to go privately, and even though I live in Plymouth, Devon, I don't mind travelling any distance.

Thanks again for all your advice and support.
 

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The anti-dsDNA and ENA coming back positive along with your symptoms would make it more likely that you have Lupus. Negative tests do not entirely rule Lupus out either. Some people are sero-negative however that is very rare.

Your request for a physician referral might get more responses if you post in the "Find a Doctor" forum.

Let us know how your tests turn out.

Take care,
Lazylegs
 

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Hi PJW and welcome

As indicated by Lazylegs, with a good lupus knowledgeable rheumatologist it is possible to be diagnosed with lupus with with negative ANA test - I was.

Don't be put off by the Rheumy saying that she believes you have depression - this is a common symptom in those with lupus - particularly (although not necessarily) where there is brain involvement.

If you want a specialist rheumy you might consider a referral to the Lupus Centre at St Thomas' Hospital in London (on NHS) or go privately to the Lupus Centre at London Bridge Hospital. I know that Dr D'Cruz (who is excellent) works at both.

You'll find more info on the Find a Lupus Doctor forum.

Best of luck

Merle
 

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I would recommend to contact more than one specialist. Some diseases are not easy to diagnose and sometimes it really helps to get two or three opinions on a certain case.
 
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