Does enyone here have lupus?

As the title states do eny members on here suffer from lupus, SLE . ? I think I may have it bin having random array of flare up like symptoms for 2 years now, would be helpful to chat to someone please, thanks.

a reply to: BoovDawg

You think you have it for two years now? Have you had that looked at yet by somebody in the real world?

Lupus SLE

a reply to: BoovDawg

I know someone who has lupus, but I myself don't personally have this odd sickness.

What symptoms do you have, and have you actually attempted to get any blood tests done to help corner the possibility of you having any illnesses?

I say it's an odd one due to the large array of symptoms, I would garner that those who have this are experiencing very dramatic issues with their health.

I wish you the best.

My cousin had lupus. My sister had RA, My brother has ankelozing Spondelitis. I have either AIP or Wilsons or one of the similar diseases. All of these are autoimune diseases and diet can help to control them. But, the diet is not what most think it is. The plant defense chemicals can cause these diseases to manifest, even though they are hereditary diseases.

Most are formed by epigenetic changes in the genome and are triggered by overconsumption of a variety of certain food chemistry. I have studied these very much because they are familiar diseases.

It will take more study on my part to be able to comment further because there are so many variables to this that cause them to manifest. I can only personally test things on myself and mine hasn't really become lupus. I think it could if the wrong foods were eaten too often though.

Most genetic diseases have triggers for them to manifest. I am sure that some people know these triggers, but they either have not paid attention to why their relatives have it and they don't or vice versa. It would take discussions between family members to try to figure out the triggers in each individual case. Maybe My cousin ate some food chemistry that I don't so his manifested as Lupus. There are other environmental factors that can also be present that can do this also. We do not pay enough attention to these things. Then we go to the doctor who has no clue other than to try to give us a medicine to treat the symptoms and keep it from getting worse. But the threat is still there if the environmental factors, including diet, still contain the trigger.

I can control the Wilson's/AIP/related autoimune issue with food choices to a certain extent and also with a special mineral supplement. This diet may not work for others though. Everyone must find how to adjust their environment to compensate. Even a feather pillow can trigger the immune system to fight something that is not a problem. And the gasses given off from a regular foam pillow can act as an indocrine disruptor to others and cause problems with health. Find your nitch and don't be afraid to try some changes, thinking them over to see if they are relevant.

Triggers are around us all the time, but constantly being in the trigger can cause problems. Plastic fills our homes, that makes it hard.

a reply to: ThinkingCap

ye doctors are rubish they just palm me off with antidepressants and what not ye iv been several times and had lots of diffarent blood tests over the years with diffarent symtoms no one knows whats up with me but over the past year I have started to devolp a rash on both my cheeks, my first symptoms started around 3 years ago chest pain in my right side and back had exray nothing, then back pain, like stinging in the top middle of my spine still get that now just finished psyio they said its bad posture, didnt help, nothing helps anway then like 2 years ago chest pain this time dull ache on and of left side and into my back cant see anything heart sounds normal but had no scans, then sweating fatigue get that now on and off just before that I had red swollen elbows making my hands tense up went hospital they said it was infection took antibiotics, swelling never went down still got it never went down but my hands stoped tensing up I mention this to docs they ignore it, I also noticed my knees got bonier kind of so think this could be arthritic. Anyway after that as of last year I start getting really bad stinging head aches like in the back of my head and also feels like behind my eyes lik pressure, thought it could be brain inflammation maybe? Get them like nearly every day now on and off for an hour or 2 again docs say take paracetamol, oh and in the midst off all that I get like a crackling in , y right lung annoying more than anything and I sweat alot like my fore heads always really hot like temperature again making me lean towards lupas iv been in the sun all weekend and the rash is npw on my nose but the main thing thats brought this up again (besides in the past having the feeling of not feeling my legs but still able to moove them went docs poked my feet with needles said iam fine) is a new symtom this last cuple weeks I am really tired and my legs feel really really weak its horrible and all this after iv stoped getting wrecked, changed my diet for the better and I feel worse than ever, I thought I was suppost to feel better T total!? I still drink now and then, oh and one last thing now and then every other week or month or so its like my lymph nodes mainly under my armpits swell up for a day or so then subside again like flare ups of some sort, soory for long wall of text wich is probably rubish grammer and what now I got an E in English sorry, but yeall this stuff has been ruining my life as much as I try to get on with it so any help I will be very grateful I am going to put this in new thread titled help diagnose me please lol thanks for your time!

a reply to: rickymouse

thank you all very much for taking the time to reply!

www.abovetopsecret.com...

a reply to: BoovDawg

Im not trying to scare you, but go get yourself tested for HIV.
What you are describing is almost exactly what happened to a friend of mine. We thought she had lupus at first. She had most of what you have, turns out it was HIV.

a reply to: SecretKnowledge

Thanks I will do that, hopefully not tho is she ok now?

I have Sjogrens ... a cousin of Lupus. My symptoms can appear like Lupus and like MS at times. Lots of autoimmune diseases have cross over symptoms so it's important to keep track of the symptoms.

Gettng a doctor to DX me was extremely dififcult. I kept hearing 'it's all in your head, take these happy pills'. But I kept going with my search for a DX. I got fortunate and an intern finally said 'hey, lets do an autoimmune workup'. That's when they caught the SSB Sjogrens bloodwork.

Don't stop until you get a good diagnosis. Find a Rheumy who will listen. Get the full autoimmune bloodwork done. etc etc. I wish you well. Let us know how you do with it all

I was just talking to her and she said that originaly she went to a dermatologist and was diagnosed with lupus, she was prescribed medication which didnt help.
After a while she had a skin biopsy which revealed that she had dermatomyositis. One of the symptons she had was swollen lymph nodes under her arm and neck area. The biopsy was performed on the lymph nodes and TB was found.
As a standard procedure once TB is found then a HIV test is performed which turned out to be positive.
She began HIV treatment immediately and within a short space of time all the symptons went away.
Im in no way trying to frighten you, i reccomend you should do this ASAP.

Please P.M. me if you want anymore details.

You might also consider schleroderma. Some of the joint and finger issues you describe sound like it. It's also an automimmune. I lost a second cousin to it.

a reply to: BoovDawg

You should see a rheumatologist soon!!

I've got Lupus too, not SLE thankfully. Mine is currently just discoid lupus so I get a butterfly rash on my face. There's an excellent steroid cream that knocks the "rash" out in a couple of days.

I have a rheumatologist that I see once a year, she wants to make sure if it becomes SLE it's caught right away. Every year I'm scared that's going to be the year the diagnosis comes, I know it's coming. Lately my kidneys have been sore so I should probably make an appointment.

Often times autoimmune diseases come in sets of three. I've got Addison's Disease, Scleroderma, Hashimoto's and discoid Lupus.

a reply to: FlyersFan

Getting a diagnosis on an autoimmune disease can be such a long and difficult process. It took a year to get an Addison's dx and ended up having a Near Death because of wrong dx. My doc kept telling me it was an ulcer. Through that processes I've learned to be demanding if I have to and get a second or third opinion.

My Aunt has Sjogren's and it looks so uncomfortable.

Doesn't matter re read tncz probly thought it was spamming thanks! Yes remove this too...

a reply to: BoovDawg

Hi!
A lot of autoimmune problems improve if you go gluten free.
Many people with Celiac Disease, are misdiagnosed for years with other things!

My hubby found out about 3 years ago that he has Celiac.
I mostly do gluten free too, even though I don't have to,
because I feel so much better when I do & have more energy!

While you are waiting for appointments, cut out gluten,
which is basically grains or anything made from them,
& see how you feel. If you feel better after a few days,
then it might be wise to go gf, no matter what it is that you have!

Here's a list of symptoms from the Celiac web site:
celiac.org...
There is a link for a symptom PDF list on there too.

Do a search & read some of the blogs that you'll find.
It's amazing what people go through before they are correctly diagnosed!
A lot of them found it out themselves after years of being misdiagnosed!

Apparently all the GMO tampering, is messing with just about everyone's immune systems!
So unless someone has access to 'real' grains, things probably are going to be getting worse!
Whether by choice or because of Celiac, more people are asking for gf products.
So thankfully, it's getting easier to find them, or at least ingredients to make your own.
Good luck finding some answers!
WOQ

Hi.
I don't have any of these conditions myself.. But when i see people continually mention autoimune disease ... i watched this documentary last year, and found it extremely interesting ... it would be wrong of me not to mention it ...

It does state lupus in the title ...

www.youtube.com...

a reply to: Segenam

thank you all very much for your time and effort great replys thanks for help!

originally posted by: BoovDawg
As the title states do eny members on here suffer from lupus, SLE . ? I think I may have it bin having random array of flare up like symptoms for 2 years now, would be helpful to chat to someone please, thanks.

Hi BoovDawg
my wife was diagnosed with systemic lupus erythematosus SLE. You need a simple blood test to look for anti-nuclear antibodies, the test is called an ANA test. If you test positive for ANA your doc /rheumatologist will take a closer look with more blood tests, this time anti double stranded DNA (anti ds-DNA) and the ENA panel. The ENA tests for several other antibodies that may point to Lupus as well. Skin biopsies on the sun/light sensitive rash can also be used to detect the disease, this is called a Lupus Band Test. The ANA test should be the first thing you do as it will help point your doc/rheumatologist in the right direction. Good luck and keep us all updated.

Hello. I'm so sorry to hear you're sick. I have had diagnosed SLE for six years and will be happy to answer any questions you may have but not sure if I can help really. AI diseases are so weird. I guess my best piece of quick advice is to get a good rheumatologist.

Darn, tried to edit but it was too long ago. Something occurred to me. Make sure you aren't on steroids when you go in for blood testing as that can skew the results. Sometimes doctors will put you on steroids initially to see if you respond and so it kind of leads them in the direction that it could be an AI disease. If you stay on steroids though, the blood work can hide true symptoms. Weaning off steroids and letting your body run crazy is a nightmare but worth it if you don't have your results yet. Good luck!