[Shufu]

Hey all...
Thank you for all of your support so far--it's really making such a big difference to me :blush:

I have a couple more questions. Recently I have experienced something of a flare of activity. I have not been diagnosed with Lupus (my doctor seems very reluctant to diagnose me with anything). I have lost a lot of weight over the past few weeks, I'm having stomach ache and cramping whenever I eat, headaches, joint pain (hands, wrists, hips and knees) and my rash was bad for a while (over my face). Now, the rash has calmed, but I've picked up a nasty case of the flu, or something (no one else is sick.. just me) which is trying it's hardest to go to my lungs (I've had "walking" pneumonia every year since 2004).

Since I can't pay for any more tests, a friends mom offered to pay for independent blood tests for me (they will do an autoimmune screen). I'm a bit wary of going though. Does it matter if you're in a flare or not when they test you? Does ANA change over time? Do I need to be really sick to have positive ANA?

The last time I was checked my ANA was "borderline elevated" which means jack diddly apparently (because it wasn't screaming *positive*). I'm worried that if I get tested again everything will be negative and I will have wasted R's money. But, they won't diagnose without positive blood work, right? So, I'd basically just have to put everything on the line and hope for something to show up?

I'm kind of in a bind right now--I am pretty sick, but I don't know if I'm *sick enough* to warrant testing...

:worried:

 

[lin]

I take it you live in the usa? As im sure here if the gp thought you needed a rheumy you would be under one, i can only suggest you keep writing everyrthing down, would have been a good idea to have taken a picture of your face, as then he would see it for him self.

i think we know when something is wrong with us, after all its your body. im sure if your doc thinks something bads going on they will order blood test, and go on your symtoms to of course.

good luck with everything Lin xx

 

[Maia]

ANA levels will fluctuate, and it appears to be unrelated to disease activity. So it can be very high while you're feeling OK, and low when in a bad flare up. How long has it been since you were last tested for ANA, etc. ? If it's been a while, and if you are really suffering right now with a bad flare, then it may be in your best interests to get checked out with some basic blood testing plus the ANA and maybe a urine screen.

If someone is concerned enough about you to offer to help pay for the testing, then it's pretty clear something is wrong and they want to help you in any way they can. If it's been 3-6 months since you were last tested, I say go for it and thank her for her help

 

[Shadow girl]

What a frustrating dilema! I do hope you are able to do what is best for you - you deserve it! Good luck.

Wendy

 

[greenhaggis]

That's an extremely kind offer to have....I would definately put pride aside and go for the tests!

Good luck with whatever you decide!

Since I can't pay for any more tests, a friends mom offered to pay for independent blood tests for me (they will do an autoimmune screen).

 

[Pink Pearl]

Some doctors overlook that there are a minority of us who have NEVER had a positive ana, yet have positive other testing: anti ds dna, aps, acl, and on....
SO, PLEASE do NOT figure that the ana is the ONLY test for lupus. The ana antibodies are present in people who have NO sign of any autoimmune disease.
Because I am ana neg, I was left untreated for 30 years. I had ana's run, but since they were neg, nothing else was ever tested. So, if the ana is neg, push on for the more specific anti ds dna which is much more (not only tho) specific for sle also acl, aps, apls, esr, crp, there are more, but these are a good place to start.

The diagnosis of lupus is met on meeting 4 of 11 criteria. This is with OR without lab work. You are meeting very close, if not more, to those criteria and I would investigate them more closely. Take a copy of the 11, check which ones you think you meet, and take it with you to the doctor.

This is just a hunch, no facts to back me up right now, but what are you eating that hurts your gut? If you have pain after eating anything with wheat, oats, barley, rye, flax seed, quinoa, glutinous rice, millet, tapioca, or spelt, you may be dealing with an intestinal disorder which makes you unable to process the protein in grains and some seeds.
The safe grains/seeds/carb sources are: corn, rice, potatoes
If you need recipes on how to cook with rice flour, I have a TON, not too far joking, of recipes I have collected in the last 35 years.
This disorder is called celiac disease, used to be called celiac sprue.
Weight loss, gut pain, ulcers in the small intestine with scaring, are some of the symptoms of this disorder.

Good luck,
Sally

 

[Douglas]

Howdy Shufu,
You caught my attention when you wrote "I'm having stomach ache and cramping whenever I eat". I have known several people with this and it turned out they were allergic to wheat gluten, i.e. celiac. That is one nasty problem but with a 100% relief factor. It might be worth checking.
All the best,
Douglas+

 

[Shufu]

Hey all,

First... I should have said that I have already been diagnosed with celiac disease and have been clear of gluten products for almost 2 years (which is why this is disturbng to me). I don't eat much meat (occasionally a little chicken), no diary, and barely any processed sugar. I have been having stomach cramping, pain, and nausea even after eating plain white rice, or potatoes.

The last time I had an ANA test run was about a year ago. That's when it was "almost" positive... My doctor refused to send me back to the rheumatologist because she dismissed me immediately the first time I saw her. She looked at the photos I took and stated, "Well it doesn't look like that now!" She then pretty much refused to take me seriously and told me that there was "no point" to a follow up appointment.

So, I haven't been back because my current doctor will NOT refer me to a rheumatologist (re: her. And her specialty is NOT autoimmune).

I'm so confused as to what to do. I don't want to waste anyone's money, but I really can't handle being this sick. All the time.

:worried:

 

[Katharine]

Hello Shufu,

It is very hard to take a decision like that. A full lupus panel is pretty expensive and I know how bad you would feel if it turned nothing up. However, it might just be your chance to check up on things and see how things are going.

I would be upfront with your friend's Mum about the unreliability of tests in relation to how your feeling and then go ahead and get the tests with no remorse!!

As for the GP/rheumy thing. I would insist on a referral to another rheumy (and get recommendations here for a lupus savvy one). If your GP absolutely refuses to do that then I'd also look into changing GP. That sounds blunt and maybe an organisational nightmare but you can't just sit back and let your health deteriorate. I realise that access to a good GP is not always as easy as it may seem but, on the other hand, a lot of people may say it's not possible without having tried.

love and hugs :hug:
Katharine