What Do You Think?

[HeatherMOttwell]

I am a 23 year old female.

I have lots of symptoms pointing to Lupus.

In fact the Dr. believes it's the route to all of my problems.

Now, I am aware I may just have a series of illness's that's may or may not be Lupus.

I have the butterfly rash and extreme sensitivity to the sun.

Five minutes in sunlight I'm as red as a lobster.

But I am also EXTREAMLY fair skinned.

I have horrible circulation in my fingers and toes. They are always pale and cold.

When I get cold I turn purple.

I have pain in every joint in my body. Including my back.

I have arthritis, bone spurs, degeneration...

Extreme Fatigue, muscle aches, headaches, The list goes on and on and on.

Everything I have could easily link to Lupus. Leaving my with no additional symptoms.

Now here is my problem:

My Dr. ran the blood work.

Ana: Neg

Sed: Neg

Good news right?

Not really, I am not sure why the Dr. ran the tests.

I was on steroids for a few days including the day I got the tests done.

Do to the fact that steroids are anti inflammatory and immune suppressants would it not temporarily "fix" the markers they are looking for causing a false negative?

I'm just looking for some insight and opinions. I know this site is for people diagnosed but I have a feeling you are the best people to get advise from.

Sorry if my post angers anyone.

Heather

[MaryF]

Do make sure they run the tests for Hughes Syndrome, which is like a cousin of Lupus, also known as Antiphopholipid Syndrome, it is possible to be sero negative for this, as it is for Lupus, tests are not the be all and end all. MaryF x

[Hidden]

As MaryF has said, lupus does not always show in blood tests. In 10 years, I have only had 4 positive ANA results. I agree about steroids etc.. Reducing inflammatory markers, that's what they are for. A lupus rheumatologist, (there is a difference), will diagnose you on your symptoms and physical exam. The bloods are a help, but not essential. They go into more complex blood tests, that gps do not do. Ask GP for a referral to rheumy, and hopefully you will get some answers.. Good luck..

Ps, nothing you have said would make anyone angry, so stop worrying.

[HeatherMOttwell]

I called my GP and he said that it wouldn't make a difference. I don't know if I believe him. I have been starting to question his medical opinion. I ask him questions and he never has answers....my appointments are always scheduled months out so trying to get answers about anything take FOREVER. Maybe ill switch Dr.s. I would like to know whats wrong with me. Ive been asking all diff Drs for several years now. At least he gave me some possibilities unlike other who just pushed me out of their offices. Its so frustrating. I know something is wrong. But no one seems to care.

[Hidden]

Wouldn't make any difference !!!! What, to seeing a rheumy ??? Or do you mean because GP is already prescribing immunos and steroids. Unless he/she, was a full time rheumy, they can't possibly have the up to date info and treatment for lupus. If changing GP is what's needed, then consider that route. This seems another of many cases where, you will have to force the issue yourself, until you are taken seriously. Lots of us, me included, have had to do this. Let us know how you get on.

[SarahHeney]

You need to see a rheumatologist and your gp needs to get over himself. Good luck x

[bevjane74]

I changed gps last week cos the one I had didn't seem to understand anything regarding hughs let alone the lupus sjorgrens rheumatoid arthritis that I also have, luckily I tested positive and right now the team I have seem to be working brilliantly together my new gp knows all the right questions to ask I've been referred to a specialist team of support workers and all is going well right now, it's early days but as long as this level of care continues I should be Ok

[Pickzie in reply to bevjane74]

That's good to hear - you need specialist help and advice. Wishing you well

[Purpletop]

I doubt you'll get a diagnosis while your ANA is negative (which is unfortunate because ANA could fluctuate) unless you have at least 4 of the 11 criteria set out here rheumatology.org/practice/c....

Have a look at the criteria, identify your symptoms and match against the criteria and then go to your GP armed with it. Hopefully you'll then get a proper referral.

You didn't mention why you were on steroids and immunosuppressants already at the time of the blood tests - are you being treated for something else? Steroids and immunosuppressants would make your symptoms improve. If the symptoms haven't improved despite the medication, then I can understand why your doctors question the presence of an autoimmune problem.

I hope you get to the bottom of this.

[pen727]

Hi Heather--I have wondered exactly the same thing about steroids affecting blood tests. Maybe someone here will know. We have very similar symptoms -- does your butterfly rash hurt like its a burn? I really hope you find some good help here and am sorry that your struggling with symptoms that sound like lupus to me, but I don't know.

I hope you have a good sunscreen --

And UVA UVB broad spectrum umbrellas are helpful too. :). pen727

[HeatherMOttwell]

I have 7 of the 11 criteria. Also I seen something about ss. I have horrible ear and jaw problems. Went to the Dr for them before starting these tests he said my ears looked fine....but now the pieces are falling together more and more.

[HeatherMOttwell]

And I was on steroids for my back. I have really bad degeneration and arthritis in my back. A long with major muscle problems...Dr is gaining lupus could be behind it.

[Paul_Howard Partner LUPUS UK]

Hi Heather. Is it your GP testing you or have you been referred to a specialist consultant? If you haven't been, it is worth asking for this referral, as you will then be seen by somebody with more expertise. Please feel free to keep using this site. We are here not just for those with a diagnosis, but also for those approaching diagnosis.

If you need any more information about lupus, we have a free pack that I could send you? Just send me a private message or email [e-mail] with your name and address.

[HeatherMOttwell in reply to Paul_Howard]

I'm not actually in the uk. I live in the us. Your guys site just seemed to be the biggest and best. Seemed like the right place to go for help

[Paul_Howard Partner LUPUS UK in reply to HeatherMOttwell]

No problem If you would still like an information pack, they can also be downloaded from our website here - lupusuk.org.uk/want-to-know...

[a_Scot]

HeatherMOttwell wrote: "I have horrible circulation in my fingers and toes. They are always pale and cold".

That could be Raynaud's phenomenon ... en.wikipedia.org/wiki/Rayna...

BTW butterfly rash is not exclusive to Lupus , e.g. it can occur in the lupus-like illness dermatomyositis ... en.wikipedia.org/wiki/Malar...

[Larrylad123]

Hi heathermOtterwell

Your symptoms seem all connected to lupus ask for a referral you need a specialist in lupus Guys have a lupus unit DNA double strand is the main test for Lupus but they will look at your symptoms too! Sometimes blood test come back meg keep having them repeated we were told yr symptoms Re the key yr not on your own!!