Hi all, I'm new here. Haven't actually been diagnosed with lupus yet but have many symptoms. Did many of you have trouble getting diagnosed?

[natal1a]

[TeganSara]

I'm the same as you, lots of symptoms, interfering with my everyday life, but no definite diagnosis. Pain started in 2008 but only started to really get sick last April.

[natal1a in reply to TeganSara]

Gosh I am so sorry to hear that. I am already frustrated after 4 months, I cannot even imagine how frustrated you must feel. You still have no diagnosis now?

[TeganSara in reply to natal1a]

The problem is with these things, because they're so unpredictable, so people get sick quickly so people take a long time. Even though I've been ill longer I probably don't have as bad symptoms as you though they seem pretty crappy to me!

[TeganSara in reply to TeganSara]

*some people get sick quickly some people take a long time. *

[Sue2803]

Hi and welcome, I think you will find that most people with Lupus had a long hard struggle to obtain a diagnosis.

Hope you get your diagnosis soon so that you can start to deal with the issues relating to his horrible illness.

There are always people on here, to rant and rave with or just share some good news with.

Good luck.

x

[natal1a in reply to Sue2803]

Hello, thank you for the welcome. I don't even know I have lupus of course but I just feel that I have been totally fobbed off and I am sure SOMETHING is going on. At this stage I just have joint pain and fatigue, and the bright red rash on my face that even with the slightest bit of sunshine, seems to get even brighter. My feet hurt on waking up, I don't even have to walk on them or anything. And my wrists and fingers are stiff and painful most of the time. But even these early symptoms are enough to have taken over my life. I have been off sick from work and just want to get back to normal. Hehe think I will need to get some patience x

[natal1a]

Hello both

Ooooooh how exciting to get two replies so quickly. I ha read a lot about people finding it hard to get a diagnosis.

Just to give you a bit of brief information about me, would really appreciate peoples honesty, ie if you think i am just being paranoid and don't have lupus please feel free to say.

I started to feel vaguely ill at the beginning of the year, but the symptoms I have now started around four months ago. I felt like I had flu, but without the snot. My whole body was aching, I was extremely tired and i gave up my social life just so that I could get through the working day and not have any time off sick. I went to the doctor because it seemed to drag on, and he pointed out that I have a red rash over my cheeks and that my symptoms matched with early lupus, so anyway to cut a long story short I was tested and my ANA titer came back positive. After seeing several doctors one finally referred me to a rheumatologist, but unfortunately, I didn't really get that much out of my hospital visit.

I didn't see a rheumatologist, I saw a physio instead. She made me do all these moves and bend all over the place etc, and to be honest, I managed to do them all. I tried to explain that doing them sitting in a little hospital room was fine, but that my difficulties were when doing things around my home, for example, washing my hair in the shower is nearly impossible because I can't hold my hands above my head for long enough. When walking about, if there is a slight hill or if stairs are involved, my legs start to feel really heavy to the point where a lot of the time I just give in

But anyway, sorry, I know I said I was keeping this short. The physio had a quick chat with a doctor, who popped in for 5 minutes, and said in a, dare I say it, a bit of a patronising way, 'oh you've probably just got a bit of post viral syndrome'. They said they would repeat my ANA test as they thought it may come back negative this time and that the first one may have been a 'false positive'. So I had the tests done again and it came back positive again at 1:400, which I know isn't that high I don't think. It also said I may be verging on slightly anaemic. But after waiting for weeks the letter from the hospital still came back saying I just have post viral syndrome and that I just need to rest.

I felt so upset when I read it. Obviously I would rather not have a disease like lupus, but I just don't feel that this is 'a bit of post viral syndrome'. My GP said he thinks it is unusual to get two positive ANA titers and for nothing to be going on, so he has written to the consultant to ask if I need some more tests. But I am just worried I am going to get fobbed off. Sorry that I am moaning, I know a lot of you have had to wait years and years and I am complaining about not getting a diagnosis in 4 months! But I have not worked a full day, in fact I have barely been to work in months, and my social life has had to pretty much disappear. I am managing ok at the moment but I just think I may start to go crazy pretty soon.

Anyway, sorry for the long message, well done if you have made it to the end. Any thoughts at all or any experiences you want to share would be gratefully received.

Thank you everyone x

[collette]

Hi natal I understand exactly where you are coming from hun. My symptoms started early last year but became more obvious last july. i too started off with flu symptoms without the snot lol major fatigue, joint pain in my ankles, feet, wrists, back. neck, knees and shoulders. I also get swelling in my ankles, hands and fingers. Originally my bloods came back with high inflammation and continued to rise with each test. Unfortunately it is a very long process to get a diagnosis. I thankfully have been put on meds by the rhumey which seems to be helping. The problem is it is such a long time between rhuemy appointments. Have you been referred to a rhemy and have you been put on any meds?. x

[bethsuejane]

I think that in this case your GP is more sensible than the hospital Doc. if there is an indicator that your symptoms are like Lupus and the ANA suggests Lupus they might as well treat you forLupus! Perhaps your GP could tell you if starting you on treatment would be detrimental to your health if it isn't Lupus? I hope that at least he could give you some anti-inflamataries until they decide.

I wonder if anyone reading this knows what the 'normal' ANA and Dble-strand DNA readings are? I thought they were just negative or positive before reading some of the posts on Heath Unlocked. Also what are the tests that are elevated during a flare? Would that just be white cell count and ESR or CPR? What are the normal levels for them?

Today my rheumy told me that "the two proteins" are still present but everything else is normal so not flaring right now. As I only finished a steroid course 3 days ago I'm not surprised despite having come off the ant-malarials due to severe itching whist on them. He prescribed some of the new age anti inflams that I can use if in pain until after my Dermo appt in 2 weeks. Hope we both get some answers! Good luck.

[Schnulke]

Hello Natal1,

I guess I´ve suffered from my variety of symptoms since about 2003/2004. I could not explain it back then, though. Severe pain in my knee-joints, fatigue to the extend that I could hardly get up in the morning, Migraines, photophoby, "can´t stand the sun"-feeling and many more...

I went from doctor to doctor and most said I was a nut case - all psycho. I´ve spent 12 (TWELVE!) weeks in psychosomatic and psychiatric clinics before last year my NEW doctor found the first abnormalities in my blood and started to believe me (very low white blood cells, high monozytes....). Just in May they tested my ANA and found I had 1:2560 and of course a rash over my nose which all the doctors before ignored or said it was made by stress...

I wish you all the best!

[mstr]

Hi Natal 1, So sorry that you are going through the above. As I read your blog I could not believe that the early symptoms are earily similar to mine. It's been 16 months for me and it does feel like a long road , so I completely understand your symptoms. All I can say is this site has been like a life line to me and it is so good to be with people who understand where we share our feelings. I hope they start to find answers for you, I and all he others that are struggling very soon. Best wishes Marion xx

[Angelcake]

Hi everyone. I'm sure I have SLE and I'm sure because of this site and reading everyone's stories and realising they are the same as my own. My big mistake however is telling my G.P that I had been on here. Now he and my rheumy think I'm a head case and have invented symptoms based on my new found knowledge!

Despite the fact that I have had two positive ANA tests, and despite the fact that I'm only 33 and onto my second volume of hospital notes, with years of problems from cardio and lungs, to random seizures (that at the time I never got an answer for) they won't diagnose SLE.

When I pointed out to my rheumy at last weeks appointment that as I'm walking around feeling like someone twice my age, with aches, pains, niggles and gripes, and I have joint pain and stiffness, palpitations, chest pain, fatigue, and my memory is rapidly going down hill, he attributed ALL of it to my children!! I have two children who are on the autistic spectrum, and according to him, the loss of feeling in my arms could be carpal tunnel, loss of feeling in my left leg he won't comment on but the rest of my symptoms are due to the stress of being me!!!! The cheek of it!! I agree my life can be stressful, but if having autistic children does this to the parents, how come all the parents I know with kids like mine, aren't all showing symptoms like me?!!

For the last two months I have written down the symptoms which I feel each and every day. I presented the rheumy with two booklets of symptoms for him to flick through (which he actually did which was a surprise) and I'm going to continue to do this for however long it takes for him to accept that this is something more than stress! I'm thinking I might have Volume three of NHS notes by the time this happens though, but I won't stop trying!

[Scoobydoo]

Hi,

I had real problems getting a diagnosis. For 10 years I kept asking my doctor since a few family members have it, but he told me not to be so stupid as it wasn't hereditary. After my uncle died from kidney failure I asked to get tested again and was basically told to stop going on about it. About 2 years ago went through a stage of being really tired, practically falling asleep in work, mood swings, depression and joint pain. By luck I worked in the health sector so had to go and get titer levers checked for hepatitis b vaccination, my levels were low so the gave me 2 booster a few months apart. They didn't work, I asked the nurse who used to work in rhemy about lupus and told her what was wrong. She advised that I change doctors surgery and pursue it further, which I did. Within 8 weeks I was diagnosed with sle and had an appointment with a specialist. Seems that all the symptoms I've had since 16 were due to the lupus and not arthritis as hospital had diagnosed way back then ( I'm now 38). It was a big relief to get an answer, but I was scared to death finding out the truth, thinking that what happened to my uncle would happen to me. Its always there in the back of my mind.

It can be hard to convince doctors to take you seriously, and a lot of them don't know anything about lupus. Keep on until you get a proper answer, don't let them fob you off. It's scary finding out but it will let you get on with things and start to manage your life and get your symptoms under control.

Take care x