View Full Version : "Undiagnosed Autoimmune Disorder" I think it's Lupus

03-27-2009, 05:23 PM
I am hoping someone can help me, whether you have gone through it or have insight I need.
I have been going to the doctors for years. 10 now. It started at 11 with arthritis. It progressed. I started getting uveitis, tendonitis, and pretty much every other "itis" I can think of. I have always had proteinuria on and off. I have WBC and OCC blood in urine on and off as well, sometimes with the protein others not. I have tested several times for high CRP AND ESR. I tested ANA positive speckled 1:640 twice and 1:160 once. I have been complement tested all within normal. I have been given an SLE profile (A). Just one. Here are the results.

RNP 18

Based on the ref range they used (all ranges were the same except ra) all are negative.

I have several other symptoms as well. Almost everyday I get a rash on my face, it looks like flushing. It starts on one side and looks almost like I have been crying tears, then it spreads out on both sides covering my cheek bones, and if it gets really bad will go all the way down my neck, but it misses under my nose and next to my mouth. I experience constant fatigue, but much worse when combined with the other symptoms. I have missed much work throughout the years, sometimes as much as a month where I barely crawl out of bed. I experience almost like hot flashes where I feel like my skin is burning. I get muscle twitches, you can see them move under the skin. I have had liver problems in the past, and gained 60 pounds in 3 months at that time, I hadn't changed lifestyle. I have had pityriasis rosea. Right now I have ulcers in my mouth, my gums are fragile and red. I have a dry cracking rash on various parts of my face, worst around my mouth. I have experienced bouts of hyperglycemia, where for a couple weeks it's uncontrollable then it goes away. I tested positive on a glucose test during that time. My family has a history of illnesses, largely undiagnosed, but all resembling what I have. My grandmother was diagnosed with ankylosing spondilitis (I am HLA-B27 negative) I have been tested for several autoimmune, all negative and I don't know what to do.

03-28-2009, 06:14 AM
hi kohlfrog,

so sorry that you are in this frustrating diagnostic stage....such a difficult time. your symptoms certainly sound like an auto-immune problem, hopefully your rheumy will be able to sort through everything and give you a diagnosis. there are several members here who have a lot of information about the different blood tests and what their readings mean. i am sure some will be along very soon.

i too searched for over 10 years for a diagnosis. my ana has always been elevated and homogeneous. in 1996 i was diagnosed with fibromyalgie, and it was october of 2008 before i was given the sle diagnosis. whereas my labs indicated lupus, the symptoms just were never enough....this past summer i began to feel much worse, and seemed to spiral downward, so my rheumy and i did some serious talking about the symptoms. upon specific conversaation, she knew it was lupus. as it turns out, i did not have enough information to answer the questions about lupus symptoms. for example, i did not realize that symptoms could come and go, so when she asked me about things like the rash, my answer was no if it was not present at the time. also, when she asked me about mouth sores, i said no, because i did not realize that mouth sores did not have to be big and painful.

it was after i joined this group that i learned what really happens with lupus symptoms, i was able to give my dr. better information, and we are on target with treatment.

i know this was long, and probably did not make much sense, but just keep reading other posts, and you will learn so much.

good luck,

03-29-2009, 06:57 AM
Just wondering what kind of Dr you are seing and if you
like him or her.
It does help to have a DR you are comfortable with.
Make sure to keep a diary of your symptoms, then you can bring that with you to your apts. With a diary you wont forget any of the little things.
Write it all down even if you think it doesn't matter.

The more you talk to people with lupus the more you will here how long it always takes for a diagnosis.

Hang in there


sick n tired
03-31-2009, 04:03 PM
hey Kohlfog,

I have the same question come to mind as Pam...what kind of doctor do you go to? It sure sounds like symptoms of Lupus...have you gone over the criteria for diagnosis? There are 11 items...there are some sticky's that can explain.

03-31-2009, 05:50 PM
I tested positive for RA but he says since it doesn't take me 45 minutes to walk in the mornings i am ok right now. I tested positive for an auto immune disease, but now he is going to do a full panel for lupus. I have had mouth sores which can be painful on my inside upper lip and the tip of my tongue and mouth are sore all the time. He says this is not what lupus does. With lupus you only get sores on the roof of your mouth and they are not painful. I also have red across my cheeks that looks like a mild malar rash and gets brighter after a shower, however he says it is not. He said I could have sores in my mouth from drinking out of a dirty glass. Would'nt you need an antibotic for that and would an infection like that come and go over the last 6 weeks. I do not feel very confident in his anwers. He also says if it is lupus there is nothing that can be done unless you have a bad flare and then you can go on steroids. This doesn't seem right after all i have read on the forums. You advice would be helpful. Teri

sick n tired
03-31-2009, 06:25 PM
He seems like an idiot...tell me, Terri, what dirty cups have you been drinking out of? That is a stupid answer...did he even biopsy the sores? Some of the sores hurt or burn especially when you drink stuff like orange juice. Some don't hurt...I have them in my nose, too, and they hurt.

Has he had the rash biopsied? Are you going to a Rheumatologist? Sorry for all those questions...it just seems when someone like him talks more questions come.

Perhaps you might want to go for a second opinion...you might find someone with more than two brain cells synapsing. At least one can hope...:cute:

03-31-2009, 06:50 PM
Thanks I agree. He said my ssa was neg, but he could do a biopsy to check further. I asked what could he do to help the dry mouth and he said he could give my something to help the salivary gland if it came back positive. I told him I did not want to do this unless I felt like I really needed to. He seemed very whatever about everything. I am going to wait until I get the next set of test results and thing talk to my doctor about a new rheumy. The mouth comment really blew me away because I knew that his comment was not correct. I forgot I also woke up this morning with a nose bleed , which is the second one I have had in the last 6 weeks when all of this started. I have never had a nose bleed in my whole life other than this. He said it could be from high blood pressure, which his nurse just checked and it was fine or it can happen when you pick your nose. Unbelievable.

03-31-2009, 07:27 PM
oh teri,

i hope your dr. can get you in to another rheumy. i don't know how he thinks he can narrow the type of mouth sores that are related to lupus, because there are so many different ways that lupus hits different people.

also, steroids are NOT the only treatment for lupus. Plaquenil works very effectively for most people, and there is immune suppresent meds that often reduce the need for steroids.

i think sickntired hit it right on....he sounds like an idiot to me too.

please don't let this wacko dr. get you down....hopefully you can move on and never subject yourself to his foolishness again.

04-01-2009, 05:25 AM

That rheumo/Dr. is a total, complete, and utter idiot. I was diagnosed with Systemic Lupus five years ago, and I have sores in my mouth, on the roof of my mouth, and inside my lips, and they all hurt bad enough to make me avoid solid foods until they subside. And there is nothing that can be done unless there is a flare? Ok, plug your ears everyone-here it comes-that is the most incompetent bullpoop answer I think I've ever heard from a so called "professional".

You could get started on plaquenil, you can get some spf50 sunblock, a hat, and stay out of the sun, there are all sorts of things you can do right now that can help you. This is common knowledge to people with Lupus, but I guess this rheumo/Dr. slept through that class. This person is incompetent, negligent, and is causing you harm by not treating you properly, I would fire this person, and report them to the medical board where you live. I thought I'd heard it all when it comes to nightmare rheumo's and Dr.'s, but this really takes the cake. Unbelievable.


P.S. You must have the patience and tolerance of a Saint Teri, because if some Dr. or nurse implied that all my problems were from bad personal hygene (drinking from dirty cups) and from picking my nose, I would have gone absolutely ballistic.

04-01-2009, 05:51 AM
and there you have it teri,

don't let this pretend dr. get you down. rob has endured many bad drs., and even he is stunned by the behavior.

so, i guess if you drink from clean glasses, and don't pick your nose, then you won't be sick.....this guy should be a millionaire....he knows the cure for lupus.

sick n tired
04-01-2009, 06:28 AM
lol Phyllis you actually made me laugh out loud....

Terri...Rob says it all...this asshole needs to be ejected from your life...I think your very health depends on it..what a screwup.

04-02-2009, 10:10 AM
My doctor is a plain old family physician, but I have seen a rheumy he just did a Sjogrens check and said too bad...called my mom a hypochondriac...since she is symptomatic too. Probably told her I was one too lol. I just went in to the doc again. Perioral dermatitis for the scaly face rash. She showed me pics...it looks right. We discussed putting me on prednisone, even though I have no diagnosis...we'll think about it if nothing better comes up. Had a cbc and esr...don't have the results yet...will post though.

And everyone is right hon...your dirty glass doctor isn't worth your money time or health.

04-02-2009, 12:16 PM
Hey I had Pityriasis Rosea complicated by MRSA and what a great time trying to diagnose that - After steroid treatment, many swabs and many different treatments for both (from fungal to anti histamine and antibiotic) the Rosea stayed and I finally found details of it online and took the printout to doctor who was then able to confirm. You realise the medical profession is as much at sea as you are sometimes. Like the internet said 12 weeks later the thing disappeared.

They called it an opportunistic benign kind of infection that comes after a respiratory infection but I also felt it was the beginning of all my worries - IT came on after the 8 week chest virus from hell and from that moment on - it was a downward spiral - but now I am in some kind of recovery mode - so hang on in there. Although it has taken a year of feeling like I was going down hill - the depression of not knowing there was something wrong is also the other factor to deal with. Once you figure you have something and ignore medical suggestions that you don't you can start managing your illness.

04-02-2009, 02:51 PM
Got my blood results back...cbc and esr were NORMAL...go figure. Nothing ever shows up. Oh well...I shall not give up hope! lol sorry I'm pretty tired.

sick n tired
04-03-2009, 08:21 PM
No I have had some normal results too...sometimes this illness can scew the results, I think...like are you on any prednisone? that can change things for you, too.

04-03-2009, 09:11 PM
No I'm only on Naproxen. Since I'm not "officially diagnosed" I can't be treated.

04-04-2009, 06:11 AM
Something I don't understand. Why do we have to get another doctor to give us permission to go see a different doctor. We pay good money and are over charged all the time then they insult us with their crap.

We should be able to make an appointment with any doctor we want to see. Even if we just want answers to questions. What makes them think they are above us in the chain of life. Are they taught in the first year of med school that they are gods and are to be treated as such.

I know from my visit to the rheumy Thursday that if he treats me the same on my next visit the cowboy in me will come out and I'll kick his butt all over his office. With the VA I get a choice of one rheumy, thats all they have, so he will listen to me from now own.

Shut up David

04-04-2009, 07:16 AM
hi kohlfrog,

it is confusing, but yes test results can bounce from normal to positive. my rheumy said she does not put 100% trust in blood tests because of this. the meds, and whether you are in a flare, can make the results vary. also, as we wll know, we encounter different problems with organs, go to a specialist who does tests, and tests come back normal....it it the life with lupus, not whether our tests are always positive.

Also, sometimes there is a variance in labs. i ran into a discrepancy between drs. One said my kidneys were in trouble, and another said no they weren't. When i stood my ground about an explanation, the dr. revealed that the labs differed in their ratings for the normal range.....WHAT? normal should be normal, and positive should be positive.

my rheumy told me not to let people deminish what was happening in my body just because their labs did not register a problem.....this is lupus, and it does what it wants.

so sorry you are going through this, just remember to keep your head high,