View Full Version : New here... not yet diagnosed.

09-30-2008, 05:56 AM
Hi everyone,

I should say first off that I have not been diagnosed with Lupus, but am seeking information about the disease and how to proceed from here.

Last friday I wound up in the emergency room with a severe rash on my cheeks, nose, forehead, neck and collarbone, with swollen lymph nodes and enough swelling around the base of my neck to look like I was growing a second head. It was assumed that I had an allergic reaction to something I ate, was treated for allergies and released.

Several days later it happened again, only I had not eaten anything. The only thing in common for both events was that I had been out walking in the sun both days performing errands. Yesterday I developed a painful sore on the side of my tongue which are a recurring problem for me. I've always just written them off as cold sores. I have frequent bouts of edema in my abdomen and legs and my mouth is so dry right now my lips stick to my teeth and gums which is highly annoying.

I guess I could just use some input as to whether Lupus is something I should ask my doctor to pursue. I have been fighting a debilitating fatigue for about 5 years now, I've got chronic sinus inflammation noted on my mri's, my lymph nodes (neck, armpits) are almost always swollen, I always feel like I'm 'fighting' something, and my temperature is always a degree or two high, but never high enough for 'concern'. It was 99 at the emergency room the other day.

At my wits end here. Thanks for any advice.


09-30-2008, 06:38 AM
Hi Digger,

Welcome to WHL. My name is Rob, and I was diagnosed with SLE in 2004. I have most of the symptoms you are talking about. Your rash associated with being out in the sun, the fatigue, dryness, and the mouth sores are some of the more common symptoms of SLE. In my opinion, those symptoms would justify asking your Dr. about the possibility of Lupus, and possibly getting a referral to a Rheumotologist.

I certainly hope that you do not have Lupus, but as you said, you feel like you are fighting something, and you need an answer in order to get your problems treated. I would write down your symptoms and note the frequency of them, and also note any activities associated with your symptoms, such as being in the sun then getting a rash.

Lupus can be a hard thing to diagnose, and unfortunately there are many doctors and rheumotologists who know very little about it. Many people are told their symptoms are all in their head, and not to worry about it. Well, you know your own body, and if you think something is going on, you should get yourself checked out. You are doing the right thing in educating yourself about the possible causes of your symptoms. There is a ton of excellent info here, and some very understanding people too. Please let us know how this goes for you, and don't be afraid to ask any questions you may have. Once again, welcome.


09-30-2008, 07:38 AM
Thanks Rob,

I really appreciate the reassurance.

The strange thing is, the rash only erupted where my neck and upper chest were exposed to the sun by my v-neck tshirt, and on my cheeks and nose. The ER doctor confirmed that it's not a sunburn. Sun isn't even that high here anymore. A food allergy was the only other thing they could think of to pin it on. I just have to approach my primary care physican very tactfully, as I don't want to appear like I'm fishing for a diagnosis. Which I'm not. I just need to connect all the dots.

He's a really good guy though. I've put him through a lot already with my kidney cancer at age 37, and a rare cardiomyopathy after that. I'm beginning to think I just plain have bad DNA.

Thanks again,


09-30-2008, 07:45 AM
Hi Digger,
My name is Kathy and I have SLE and Sjogrens and several other auto immune disorders big time. I am wondering from your list of Symptoms if you may have Primary Sjogrens. You can also get a host of different rashes with Sjogrens. I also wonder about Sjogrens due to the severe dry mouth and swollen neck nodes wich could be the Perotid glands. You can also have sun sensitivity with Sjogrens as well as Lupus. I think that they should test you for both of these illnesses as they are both Auto-immune disorders. Let us know how it goes with the doctor.


09-30-2008, 08:05 AM
Hi Kathy and thank you,

Quick question: I've been reading up on some of the tests, specifically the ANA blood test. Is this only accurate if you have it performed while you are having a flare-up, or are the antibodies present all the time?

09-30-2008, 09:11 AM
Wow, I must say that this site has been very eye-opening. I was looking over the alternate criteria for Lupus and it's almost scary. I just happen to be allergic to Sulfa drugs, I'm extremely claustrophobic and/or agoraphobic, I have panic attacks in crowded places (shopping malls, theaters, parties), I break out in a drenching sweat wherever there are lots of people around, even if they are people I know, and when I was 12 I got mononucleosis so bad I had to be hospitalized. The information I've gathered here already is just staggering.

09-30-2008, 12:53 PM
Hi you, Digger...welcome here....

Regarding your question, ANA test accuracy....Can be used as a gauge for the activity of the disease along with other tests, CBC and your symptoms too as well as part of a diagnose.

But note, a positive ANA doesn't necessarily mean Lupus, nor does a negative mean no Lupus...maddening isn't it.

The test is accurate if performed correctly regardless..it is just a tool to assist in diagnosing many diseases and Lupus is one of them. Lupus is also a great mimicker of many diseases that is why most of the time a diagnose never seems near...

Fishing or seeking a diagnose...having many symptoms, I would suggest sharing your thoughts on what you feel it maybe, Lupus to your doctor. One shouldn't have to be tactful with their doctor or worry about putting him through anything.

Your health, your body, your time, your money...you have to be the advocate for your care, so please share, It is a partnership....

Keep looking for your wellness..hugs,

09-30-2008, 01:09 PM
Hi Oluwa and thanks,

My doc can't see me until sometime next week and this rash is really frustrating. I was outdoors for only about an hour today and it really hurts again, as well as this sore on my tongue. My left side hurts when I take a deep breath, my neck hurts when I turn my head, and I think I'm carrying some fluid again. If I'm not better by morning I think I'm going to go back to the hospital and be seen as an outpatient.

Thanks for letting me whine.


09-30-2008, 01:35 PM
Hi Digger...

I've had a bout with the rashes all year. On and off for days rolled into weeks. Currently, I am tangling with one right now...g-g---r-r-r-r.

Scratching till I am black and blue, bleeding....the itch, isn't it maddening. Scabby and crabby from the itching. This bout almost three weeks. Many restless nights. This time started as a small patch on my hinder..now it is on my elbows, knees, stomach, lower back...last bout was all over my neck and chest...

Do you have any cortisone cream, OTC or prescription strength? Oatmeal for a bath? Maybe antihistamines, pills or cream? Maybe you should ensure you are covered, hat, sunglasses, clothes and sauve with a sunscreen on the naked spots before going outside.

Avoid too warm of showers. Use mild soap, Cetaphil..baby cleansers. Dab your skin dry...use a mild lotion...

Wear smooth clothing as not to irritate your rash.

The Four Rules Sun and Lupus.
1. The first rule is to stay out of the sun, especially during the middle of the day.
2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
3. The third rule is to wear a hat with a broad brim.
4. The fourth rule is to wear long sleeves.

For the sore in your mouth...try rinsing your mouth out with Milk of Magnesium or liquid Benadryl, then spit it out. Some say it brings relief. Avoid chips and the like, salt licks..., soda pop, alcohol, spicy foods...crunchy foods.

If you do have Lupus, the sun could be bringing about a flare...hence the rash and mouth sores....

The advice, suggestions above is what a Rheumatologist would give you....or he may give you a dose of steroids, Prednisone...but I would suggest trying the above first.

If you don't have a prescription strength cortisone cream ask for one.

Keep well...

09-30-2008, 02:07 PM

Thanks so much for all of the great advice.

No worries about the hot shower, I've always been a bit temperature sensitive so warm is about as far as I go. I do have some OTC benadryl I will try taking tonight. If nothing else, it will make me drowsy and maybe I'll get a few hours sleep. Other than that I don't have too much around here. I'm a bachelor and a graduate student so you could say my apartment is a bit 'spartan' in supplies and I really don't feel like a trip out to the store.

Appreciate all of your help.


09-30-2008, 02:14 PM
Hi Digger...

You're welcome. On the Benadryl..I believe it is 25mgs..take two. Take it early so you can wake on time....Sleep tight.

If you use aftershave..cologne..avoid skin contact till the rash resolves.

Sweet Dreams....

09-30-2008, 02:27 PM
One more question before sleepy-time. :)

The sores that are associated with Lupus... can they appear anywhere in the mouth? Mine always seem to prefer the right side of my tongue for some reason, but I've also gotten them on the inside of my cheeks, lips, and gums. Painful little suckers. White in the middle and really red around the outside.


09-30-2008, 02:32 PM

Yep anywhere. I don't get the mouth sores, ulcers... but I do get the nasal ones. And what a stinky mess those are...and painful too.

For the nasal ones, I keep moist with a bit of lube...

Mine erupt out of stress...another thing we must manage. Lupus or not it is a good thing to manage..makes life more harmonious....

While you sleep, keep your room cool..perspiration agitates the rash...

Enjoy your dreams...

09-30-2008, 04:05 PM
Hello and welcome digger

I use Fletcher's liquid sore-mouth medicine. You can buy it off the shelf at the drug store.

It works really well for me. I tend to get the mouth sores around the gum and on the inside of my lip. The tongue is a hard place to treat.

I usually put the fletcher's on first then there is a paste called orabase. I use that if the sore is in an area that gets rubbed constantly. It coats and protects.

It's gritty and discusting but it works :lol:

One other thing I should mention...if you use colegate toothpaste....please switch to crest or another product. There is a chemical in colegate that can actually cause sores. I found this out from my dentist :shock: I had just started using colegate.

Also if you are sensative to wheat or gluten, colegate contains glutens.

09-30-2008, 04:52 PM
Hi and thanks for the welcome,

I use Ultrabrite actually, but I see on the tube that it is made by Colgate. :(

I've never been diagnosed with a wheat/gluten allergy but interestingly enough I recently went on a low-carb diet to try and drop some pounds, and discovered that my chronic diarrhea went away. I've been thinking about eliminating grains altogether to see what happens. I also went completely dairy-free for a short time and it seemed to help my chronic sinus and ear infections. I've had inflammation of my left maxillary sinus since 2003 and my docs pretty much gave up trying to treat it. Even sinus surgery didn't help. That more than anything is what I really want fixed.

Thanks again,


09-30-2008, 05:20 PM
Check the packaging of the Ultrabright, see if it names the filler they use. Should say gluten or something similar. If you have any doubts switch your brand of toothpast.

Check and see if there is a local Celiac's society near you. If there is an office drop in and ask for one of their shopping guides.

My sister has lupus and celiacs (that is a wheat intolerance). We went to the local office here and she got the shopping guide. It helps you to identify brands that use wheat products as filler. This can include medications.

If you are going to be tested for celiacs, the doctors will not want you to mess with your diet as it will affect the testing. In other words they want to see how misserable wheat makes you.

It might not be the wheat in the colgate that is bothering you. It could be another chemical. It's just very harsh on our delicate skin lol.

10-03-2008, 12:38 PM
Thanks again everyone for the kind words and advice. Went to the ER the other day and got the rash treated and it's a little better. They put me on prednisone (short-term) which I don't particularly care for but I might as well get used to it I guess. Also got an appointment with a specialist at the end of the month and will hopefully get some testing and some answers. Just gonna hang in there in the meantime. :)

10-15-2008, 10:09 AM
Hi All,

I got all of my bloodwork back today except the three Celiac tests which were sent off to Mayo.

All of these were negative:

Anti-Nuclear Antibody (ANA)
Creatine Kinase (CPK)
C-Reactive Protein, quant (CRPQ)
Comprehensive Metabolic Panel (CMP)
Rheumatoid Factor (RF)
Sedimentation Rate (ESR)
TSH reflex (TSH FLEX)

These are still pending:

Anti-gliadin Antibodies
Tissue Transglutaminase IgA
Anti-endomysial Antibodies

The ANA was less than 1:40. Everything else was right down the middle of the reference range. At this point my doctor strongly suspects Celiac based on my symptoms, and we'll have those results next week.

Just wanted to say thanks so much for the expert advice and support, and I wish everyone here the best possible health.


10-15-2008, 11:52 AM
Hugs Dig,

How are you feeling today? Celiacs is quite possible. My sister has both lupus and Celiacs. The Celiacs went undetected for a long time as both my sister and our doctor put the symptoms down to lupus. Very similar.

They finally caught it and now that she has been diagnosed and has changed her diet (which they do NOT want you to do untill you have been diagnosed, incase they need to do further testing and dont want the tests messed up) she has been feeling 100% better.

Hugsss and keep us posted :)

10-15-2008, 02:28 PM
That's nice of you to ask, sits_inthe_corner,

I'm not feeling that great to be honest, but I will gladly accept a Celiac diagnosis if it explains my symptoms and gets me on the road to recovery. I just can't wait for all the testing to be done! I've remained heavily glutened for the process (I am a bread-o-holic), and I'll stay that way even if the blood work is positive so that it can be confirmed by biopsy, which means I have another 30 days or so. It's kinda tough consuming something that you know is possibly hurting you, but I was told it's always better to try and get a formal Celiac diagnosis if possible, rather than self-diagnosing and instituting the diet on my own. That way it's in my medical record.

You take care!


10-15-2008, 04:33 PM
Well hugss to ya digger,

If it is Celiacs, trust me you will adjust. Find your local Celiac society office and get in there. They have GOBS of info that is helpful. Little shopping guids with brand name foods that are Celiac friendly and lists of products and foods that are NOT friendly and how to spot the difference.

They also provide a list of restaurants that have Celiac friendly menus. My sister has done amazingly well and she was a breadaholic as well.

She tried her had at making her own bread, you can buy premade potatoe and rice flour for baking with, but really it's tricky. There are some Celiac bakeries around. Some times they will sell you their baking flour which my sister loves. You have to get the mix just right, trust me it's ugly if ya get it wrong.

I tried to make her some dinner rolls once, we're still laughing about it. HARD! Oh my word, you could make a love rock garden with them.

The Celiac diet really isn't all that bad, it's just learning a new way to cook.

You can stell eat stuffing and cookies and stuff you just have make sure they are made with the right stuff.

Hope you get your answers soon and I hope you feel better even sooner.

Please let me know how your results go.

10-15-2008, 05:04 PM
I tried to make her some dinner rolls once, we're still laughing about it. HARD! Oh my word, you could make a love rock garden with them.
Ha ha. That's too funny!

A friend of mine gave me a recipe for pumpkin spice muffins for halloween. They're made out of beans of all things. She swears they look and taste just like a real muffin made from wheat. I'm actually looking forward to experimenting with recipes like these. Even if my tests are negative, I'm still going to give gluten-free a go. Tests don't always mean everything.

Maybe your sister would like these:

Pumpkin spice muffins

1 15oz. can of white or brown beans. Rinse and drain.
3 eggs
3/4 cup of splenda (or whatever)
1/4 cup dry milk (helps to make it rise)
2 tsp. baking powder
2 Tbsp. oil
1/2 cup of pumpkin (the stuff in the can)
2 tsps of pumpkin pie spice
1 tsp vanilla extract

Optional: Can add 2 tbsp of ground flax seed if desired

Combine all ingredients and beat the heck out of it in the blender, pour into muffin pan, bake for 25 minutes at 350 degrees. Makes 12 muffins.


sara akhtar
10-16-2008, 12:00 AM
Hi Dig

I use Oraldine mouth wash for my mouth ulcers - takes a while but seemed to help. Also found that if I cut sugary foods out that helped even more - problem is there's nothing like a bag of sweeties when you're not feeling 100% :oops:

Hey you got my name 'sea monkey' - I'm now a tadploe :shock:


10-16-2008, 09:41 AM
Hey you got my name 'sea monkey' - I'm now a tadploe :shock:
I love Sea Monkeys!

When I was a kid I ordered them out of the back of Boy's Life magazine and I was SO excited when they finally arrived in the mail. It took the usual '6 to 8 weeks' but of course being a kid I started running to the mailbox every day starting from the day I mailed the freaking money order. What a dork! LOL. Have to admit though, I'm still a dork and quite proud of it. 8)

Anyway, enough of my trip down memory lane. :roll:

Regarding the mouth ulcers. Are the ones seen in Lupus the same variety that are seen in Celiac? The reason I ask is that Lupus has now pretty much been ruled out for me, but Celiac is very much a possibility. The description of these ulcers are very much like what I have been getting. Since Celiac is also an autoimmune disorder, I thought maybe they were the same type? It would explain quite a bit.


sara akhtar
10-16-2008, 10:18 AM
I've never heard of Celiac Dig, I'll just go and google it. I haven't been diagnosed with anything as yet and I'm new to all this - sorry can't be of any help.

My kids had sea monkeys once - must have ended up being flushed down the toilet I think but I can't remember.


sara akhtar
10-16-2008, 10:29 AM
Just googled Celiac Dig - it's amazing how many symptoms are similar with sooooo many deseases. No wonder we can't get quick diagnosis is it? So are you going gluten free then Dig? Seems to work for lots of people doesn't it? Keep us posted on how it goes - I've thought of trying it myself so I'd be interested to track your progress. I just love bread so very very very much though :cry: Just have to replace it with even more chocolate I guess :D


10-16-2008, 10:39 AM
Hi Sara,

No, I'm still eating lots and lots of gluten right now because I was told going gluten-free too soon would screw up my test results. I want to get an accurate diagnosis so in the meantime I'm still eating lots of bad stuff. I hope you also find out soon what is troubling you, and thanks again for writing back. :)


sara akhtar
10-16-2008, 10:59 AM
Ooooohhhh sounds like my sort of diet :evil: I am really going to try and start a strict health regime this weekend AGAIN!!! :oops: By-the-way are you a boy sea monkey or a girl sea monkey - can't tell by the name Dig :D