[Anika.]

I know I have mentioned here before that when I get physically sick I get a red rash on my nose which lasts for weeks. Last night the rash has developed again only this time much worse, it is across both cheeks and across my nose. It is raised a bit and feels kind of raw. Looks very much like a butterfly rash you would see in lupus. But I don't think a butterfly rash is supposed to hurt? I don't really know, So I am just perplexed.

I had been worried about this before because I have photolight sensitivity, I have been dealing with polymorphous light eruption for about 10 years. The whole back of my leg has felt light a huge cramp for about three days, making it painful to walk. I had a thread in the health forum about not being able to walk or put my feet on the floor because of intense pain. I have developed sores in my mouth that are painful, but do not look like canker sores. I have to go pee about every 20 min for the last few weeks (which is usually quite clear in colour but this morning was pretty dark) Having trouble breathing, and deep breaths are painful. And I have this stupid flu which I think is getting better now.

Overall I feel like ****, despite being committed to no gluten, and I took the celiac dx to mean that this was the cause of these types of problems. So I don't know. And now with the mood problems, and physical problems surfacing all at once again, I don't know anymore.

I just hope they can give me some answers this time. I am so tired of tests and poking and prodding and getting no answers in return. So please wish me luck.

I have to start my new job on wednesday, and today is sunday here. Yay! I sure hope this settles down in the next few days.This isn't really how I had it planned to go down.

[moremi]

Ahh girl Im sorry your feeling so ******, I sure hope they figure out whats going on with you asap. Lots of hugs your way.

[Trippin2.0]

Anika,my friend. Thats a pretty ****** deal you got going right now I hope the poking and prodding come to an end, and that your skin goes back to normal... Sending lots of love from this side of the ocean

[Anika.]

Thank you guys.

I sure hope Something gives. I am just waiting for my bf to pick me up, the only thing open today is walk in clinic. So far to date I have had cat scans, cerbral angiogram, colonoscopy, ultra sounds, biopsies, barium enemas, x rays for arthritis and inflammation, too many blood tests to freaking count, physiotherapy. And the only answers i got are that I have some abnormal cerebral arteries..and missing half of circle of willis. Abnormal cells in intestines, some tissue problems in large joints, inflammation, vitamin deficiancies in k, iron, b's, and A. Normal ANA tests which complicate the whole thing. Sorry I am just trying to get it all out so I can write it down and hand the dr the info. And work out some frustration, Because I am sick of being told I have x, and then told no it's not it's z.

I have been told it's chrone's, then no, Ibs, then no, osteoarthritis, bursitis, food adversion , mental, fybro, and every time they go back and take the dx back. So guess they have no freaking clue.

I feel pretty discouraged about getting anything concrete at this point. I am quite sick of dr's.

[Anika.]

Maybe I should start taking bets on what they will say next, at least would be more entertaining.

[BlueInanna]

Oh Anika I wish you luck, and pray they can find the answer. What about mold allergy? Maybe you've already checked that out. Were you doing a lot of extra cleaning before your mom came? Mold, dust, cleaning supplies? I so hope you can feel better soon.

[~Christina]

Good Grief !!! I am so sorry you are dealing with ALL these health issues at the same damn time . I understand your frustration is not being able to find someone to give you a freaking diagnosis and treatment that will work
Sending you tons of and

Yikes, Anika, that's quite a bit of concerning stuff...I sure hope it can get sorted out soon. How frustrating all the tests with inconclusive and changing dxs! Good idea writing everything down.

Where's a real life Dr. House when you need him? (The brilliantly sifting through perplexing symptoms part, not the ways he sometimes goes about testing his theories part(!))

Wow, I sure hope they can figure it out and get you to feeling better very soon....

Awh Anika, this sucks to hear! I hope you feel better soon... Good luck with the doctors, even though they're mostly useless.

But I have to say, this sounds suspiciously like Lupus! My Mum had it, so I'm very familiar with how it looks & behaves.
But there's news. If your ANA test came back negative, that doesn't mean you don't have it. Sometimes your ANA levels can go away & come back, depending on the phase of the illness. And a small percentage of lupus patients don't even have it! I'd also get tests done on your anti-DNA antibodies & anti-Ro antibodies. The anti-Ro especially because that is the antibody specifically that causes the rash & photosensitivity.

*hugs*

[LucyG]

I'm sorry you're going through this.

What meds are you on? Have you googled them to see if the rash and mouth sores might be side-effects? I was put on Atenolol for hand tremors and developed eczema across both sides of my lower face that went away when I went off it. I also developed several cankers at one time years ago from some birth control pills. Might be something to investigate until you can get to your doctor.....

[irishgirliexo]

Anika, I'm sorry you have to deal with all of this. Hopefully they will figure out what is going on. I wish you luck!

[Anika.]

Long day, long visit...

The dr was very nice and thorough. She said between the malar rash which looks very much like lupus, the ulcers in the mouth she said because they are on the tongue and roof of mouth are both tell tale signs. When she asked me about previous stuff I mentioned the solar keratosis my gp had seen about a month ago, she looked at it and said it looks like keratosis that is seen in systematic lupus eureth?? ( i have no idea what she said. And she also said that celiac and lupus are often seen together as well as celiac with other autoimmune diseases.

She went over my whole history which took a long time, but she said there were lots of things they need to look at such as the problems I have had with my kidneys and lungs. She thinks it is Pleurisy with the lungs right now, which is also often seen in lupus.

Sooo I got a whole ton of blood work to get done up tomorrow, and chest xrays. She said she will get my gp to send me to an Immunologist, the nearest is about 5 hours away.

I am very tired and I don't know if I am supposed to feel relieved that she thinks that's what it is, or upset cause that sucks a lot. I guess it's something... aside from very ****** genetics.

Shay, thank you, that is exactly what she said about the ana tests. So hopefully this time something shows something. She said they would do more thorough tests.

I have some cortisone cream for the face. She told me to change the light bulbs in my house if I had the new compact energy efficiant bulbs, she said they give off uv rays and can trigger the rashes. Ohh awesome. .that's all I have in my house. Good to know. soon we will all be wearing sunscreen indoors!

Omg I am sooo tired. x.x I am on no meds at all so thankfully at least that doesn't complicate anything.

Love you guys, thank you for the well wishes

Anika Wow. What a day. That's a lot to take in. I'm glad she was very nice and thorough and that they will be doing more tests. It's totally understandable to not know whether to feel relieved or upset! Or both! It really really is a lot for one day.

Wishing you good sleep tonight and that tomorrow's tests go smoothly.

That's quite a distance for the immunologist. I swear -- if I lived closer, I'd sooo offer to drive when they get you an appt. with them! (Passport's still good for a few more months, even!)

So very much your way, Anika...

(Very good to know about the light bulbs! I never liked 'em, now at least there's a good reason at hand.)

I know you're probably too tired & too worried to think of it this way, but... Having an answer is such a relief. If you're able to help control your flare ups? You might also be able to control a lot of the bipolar too. Sometimes bipolar is made worse or even caused by the CNS inflammation of lupus.

*hugs* It will be alright, Anika. Just hang in there. And get rid of those pesky lightbulbs while you're at it!

[notz]

(((Anika)))

[LiveThroughThis]

Originally Posted by Anika.

The dr was very nice and thorough. She said between the malar rash which looks very much like lupus, the ulcers in the mouth she said because they are on the tongue and roof of mouth are both tell tale signs. When she asked me about previous stuff I mentioned the solar keratosis my gp had seen about a month ago, she looked at it and said it looks like keratosis that is seen in systematic lupus eureth?? And she also said that celiac and lupus are often seen together as well as celiac with other autoimmune diseases.

She went over my whole history which took a long time, but she said there were lots of things they need to look at such as the problems I have had with my kidneys and lungs. She thinks it is Pleurisy with the lungs right now, which is also often seen in lupus.

Sooo I got a whole ton of blood work to get done up tomorrow, and chest xrays. She said she will get my gp to send me to an Immunologist, the nearest is about 5 hours away.

Shay, thank you, that is exactly what she said about the ana tests. So hopefully this time something shows something. She said they would do more thorough tests.

She told me to change the light bulbs in my house if I had the new compact energy efficiant bulbs, she said they give off uv rays and can trigger the rashes.

Omg I am sooo tired. x.x I am on no meds at all so thankfully at least that doesn't complicate anything.

Love you guys, thank you for the well wishes

I have to say, Shay's post was quite timely, It makes perfect sense for you to not know how you feel about the dr's theory-diagnosis. I think all of us who have been misdiagnosed only to find the right one have felt that way to some degree before.

But as Shay said, if it is Lupus, at least you have an answer. From what I gather, this doctor is new? Yes, the chroniling of health history from birth to now is annoying, but in my experience the good drs are the ones that do that. She sounds like she was very thorough and able to connect the dots well,

That thing about the lightbulbs? Seriously? Wow. I don't have lupus but other skin flareups so i ain't taking any chances.

Been reading this thread and the other. I haven't gone through as much as you have with the battery of tests and numerous wrong dxs, etc. You are ****ing strong as hell, don't forget that, ok? I know ppl that would have totally crumbled by now.

Can't wait to hear updates. Rooting for you girl. Cheers that you've done all you've known to do--with the celiac stuff and your diet, etc. I'm sure that helped simplify things.

[moremi]

Hang in there girl, sounds like your answers are all coming. You have been brave and strong as you have been through a lot lately with all the test and prodding and poking. Most people would give up but you have held on and now you are almost there. Im proud of you. Hope you have a day to feel some relief. Change those light bulbs I had no idea about that. Keep your head held high, your answers are right around the corner.

[Trippin2.0]

One tough cookie hey so proud of you for sticking it out, sitting thru all that waiting, more tests, more talking, ALL while you already have a shitload of other random and not so random ****** stuff going on. I admire your strength and tenacity, I do. Mwahz you're gonna be ok hun, no doubt.

good luck at the dr.

hope it goes okay

[Anika.]

The full on questioning and taking history is a welcome change Livethroughthis, that's for sure, I have seen so many dr's and specialists and they always want to take symptoms on separately, which is what leads to so many mis dx's in my case. No one is that sick, not at my age usually. If I had all those separate illness at once, my god!

The light bulbs , yes, I was kinda doubtful so I had to look into it my self last night. Me question doctors? No way Actually those new light bulbs are quite something, and something that we all should be aware of. They contain mercury, they have blown up, and we all know that kids tend to break things... so having mercury vapor floating around the air is not really a good idea . When you switch them on scientists claim that several carcinogenic chemicals are let off, so recommended not to have them near your head or in areas that are not well ventilated. Aside from the UV rays they omit. And on top of that Canada and in Europe.. sorry not sure about the states, have plans to enforce the use of these lovely bulbs and phase out the older incandescent with a ban. Or already done so.

If that isn't a bit nuts, a complex hazardous-materials procedure is recommended by the EPA ( http://www.epa.gov/cfl/cflcleanup.pdf ) when they break. It details how to safely clean up a broken CFL lightbulb, things like not vacuuming and spreading the mercury vapor around, putting it in glass jars not plastic bags... it's only three pages long.

IZ, I think you were onto something about your dislike of these bulbs.

Ok sorry for that, but that stuff just gets to me. I love the environment and my family and friends, and I would like to keep them all.

Thank you for all the support. I am just going to focus on getting ready for work. I told myself I was going to practice power poses and stuff. I want to show up being confidant, or looking like it anyways so that I have a good start, with the employers and the other staff. It's a pretty social environment up there, and I don't want to walk in all small and nervous and shy, which is usual for me, but not really a plus.

I think it will be, if it turns out for sure to be lupus..well then I have probably had it for a long long time anyways, much like when we get our BP dx, nothing really changed except for our knowledge and know how.

ok I feel like I have taken up a lot of time lately. So thank you all very much, it means a lot to me and your faith in me! I don't always feel very strong.

[faerie_moon_x]

Wow, Anika.

I'm sorry things are not going so well for you. It's true that once you have one autoimmune issue you may also have others. I know this because lots of people with type 1 diabetes (which is autoimmune) also have lupus or CF or other issues, too.

It will all be okay. A lady at my work has lupus but you wouldn't know it at all, the only reason I know is she told me.

And thank you for researching those bulbs. Holy cow!

[Trippin2.0]

EhrMeGehrrrd! We MUST have those lightbulbs, pretty sure they're the same ones you mentioned. A few yrs ago, reps from our city canvassed every area to get rid of old lightbulbs and replace them with a new energy- saving type. And these ones must be dropped off in special bins when they need to be discarded... I have to warn my cousin, she also has photosensitivity, actually,her skin's allergic to almost everything, and she keeps wondering why she still looks like shrek on days she has avoided the sun!

[~Christina]

Anika

You are so strong ! You have been looking for a diagnosis for a long time . Most everyone else would have just given up. I'm so glad you found a doctor that took the time to take in your whole set of symptoms . I hate that the closest doctor is so far away .. Stay strong and be kind to your self

Your in my thoughts as always