Can you please share your story leading up to diagnoses of Lupus with us?

just bumping up. Thank you

Welcome to our forum Susan. My story is a long one, but if you're willing to read here it is. In 2002, not long after I moved to ATL, I was tired all the time and my doc said she thought it was allergies. I took the Claritin and felt better. Nov I had a couple of falls in public and Dec I was dizzy, had bad memory & concentration problems and "spells" of extreme fatigue & weakness.  I lost sensation in 2 fingers, decided to see a new doc who referred me to a neurologist. Neuro was concerned & said if it got worse he'd admit me. My next spell I could barely walk, the pain was in every joint and I was admitted. I was given IV solumedrol and felt great by the next day. Tests were still being done and while the neuro on duty was doing my spinal tap he suggested I had a somataform disorder- it's psychological. I flipped out, started crying uncontrollably and ultimately asked to be discharged. So for the next two years I had multiple flares and no doc believed me. Luckily I found an internist early 2003 who prescribed Celebrex. It gave me lots of pain relief, but the fatigue was mind numbing. For my job I was flying to cities all over the country. I don't know how I did it. I saw many docs trying to get a diagnosis. Finally when a neuro ordered an ANA it was 1:320 so he referred me to a rheumy who told me to come back next year. Sept 2005 I was flaring terribly, saw rheumy and my anti-double stranded DNA was 1:10. He said come back next year and we had a big argument. He ran the test again which was pos and he diagnosed me with SLE Oct 2005 and put me on plaquinil. If you've read this far, bless your heart. Lots happened since then and I'm now on permanent disability. There are ladies on the forum who have stories just like mine- years to diagnose. Susan, I hope you find relief and comfort this holiday season. Love, Butterflake

I'm sorry for a delay in responding. I know several of us are having some difficulties/complications we are dealing with at this time. My story started in 1999. I was 27 working two jobs as a nurse. I went to Jackson Miss. with my pastor and his family to work at a summer camp for kids. We were working 12-14 hour days preparing 3 meals a day for 400 kids! I felt fine. On Thursday nite, I went to the trailor Iwas staying in I spiked a temp, my urine turned "coke" colored. I managed to get back home (3 hour drive). I went to the clinic I was working at and was shocked to learn I was in kidney failure. I was sent to a larger city hospital that nite. They biopsied my kidneys and "felt" that the failure was secondary to "some autoimmune disease" probably lupus. I was placed on 120mg of prednisone by mouth after 5 days of massive infusions of steroids intraveniously. I was weaned off of the steroids after a year. I was on no meds for 3 years. I was convinced it was an "acute" situation and not lupus at all. Unfortunately, I came out of remission in Jan. 2004 and have had multi organ involvement. I found another doctor and a firm diagnosis of Lupus was made. It is a frustrating process and an emotional roller coaster ride; to say the least. I wish you the best. Keep us informed on your progress! Judy

My journey to a DX was a long one... I just kept having these terrible things happen to me... swelling of joints.. fever, plursey, eyes swelling... being able to barely walk... high ANA test... I had been going to a Dr. in Little Rock for two years.. he never did DX me with anything.. then we moved to the Tulsa, Ok area and the first thing I did was find a Rheumy.. I just got the phone book out and picked one and oh my has he ever been a good one... I was DX.. with Lupus in Dec. 2005.. had been on just one medicine this whole time.. I've had some bad flares... I'm not working anymore... and I'm happy I'm able to stay home... What is your story?

my walking problem was because my knees were swollen all the time... I couldn't bend them to walk... so painful...
but now...I'm having the heavy feeling in my upper leg, thigh area... this is a new thing for me.... I have the same thing in my arms from the elbow to the joint at top of arm... sometimes I can't raise my arms....

Hi Susan,

Warning: LONG post!! I do apologize, but I feel that I should share these details because it will give you an idea of the long and winding road you might follow when you set out to figure out what's wrong with you! Please keep in mind that, according to my doctors, I'm complicated (medically speaking); I sincerely hope that you don't have anywhere near this many disorders and medical issues!! :)

My journey to the diagnosis of lupus was convoluted...my family has lots of problems with AI diseases. Two of my aunts died from complications of lupus. My father had RA; I have a daughter with Hashimoto's thyroiditis, another with lupus and Addison's disease, three grandchildren with either celiac disease or NCGI, a niece with Graves disease.

But, until a couple of years ago, my only health problems (that I knew about) were Hashimoto's thyroiditis, "IBS", asthma, and mild psoriasis.

about two years ago I started to have problems walking or standing for long periods of time (more than an hour). Then over several months, the time I could stand or walk grew shorter and shorter....half an hour, 20 minutes, 15, 10.....etc. I complained several times to my primary care doctor and she started to treat me as if I were a hypochondriac when xrays of my lower spine came back normal. But by spring of 2008, I was in agony after standing too long....my lower back would spasm violently until it felt just like I had a midget on my back beating my lower spine with a 2x4.

The funny thing was that I was having all sorts of other weird symptoms as well: vertigo, violent migraine headaches, abdominal pain, muscle spasms in my feet and hands, tremors, blurry vision....very strange. I too had the feeling of "heavy legs", weak muscles in thighs and upper arms, etc.

At the end of April I asked for a blood test and they discovered my liver enzymes were through the roof: AST/ALT were each higher than 1400. By June I'd been diagnosed with autoimmune hepatitis, meaning my immune system was trying to kill my liver. So I was put on high doses of prednisone and Imuran to suppress the immune system.

But things kept getting worse....in July I was diagnosed with fibromyalgia and rheumatoid arthritis. By August I was in so much pain I was forced to get a wheelchair. I saw a neurologist in September; he did a nerve conduction study and found several pinched nerves, but none of them explained the pain, and my MRIs and my EEG have all been normal so far.

In fall 2008 I saw a gastroenterologist, who tested my blood, biopsied me, got nothing but negatives, but still suspected celiac disease because I have one of the main celiac gene markers, HLA DQ8, plus a family history of celiac, plus a positive response to the gluten free diet. He told me he had expected negative test results because I was on prednisone and that would suppress the celiac antibodies. So I found out that the "IBS" I'd had for decades was really celiac disease!

I started to feel a lot better gluten free, but still had various symptoms that just wouldn't go away, especially the pain in my back. I was told to be patient, that it could take a couple of years to be 100% better!

Then few months ago I began to experience some of my old neuro symptoms again: vertigo, migraines, tremors, etc. I was upset! I had thought that the gluten free diet was the answer to all of that!! Around the same time, I stumbled across discussions in one of my celiac forums of even more restrictive diets (SCD, Paleo diet) and people who swore that they felt MUCH better when they stopped eating all grains.

It took a while, but eventually my husband and I decided to try going grain free....we've just started this fairly recently, and we've fallen off the wagon a few times, so I don't really feel like we're grain free quite yet. I have noticed that my last lingering gastric symptoms have disappeared though, even on our imperfectly grain-free diet!

So sometime this past summer I realized that I needed a new rheumy....my old one just wasn't listening to me anymore. I found my current rheumy through my sister-in-law, who has MS. This doctor is GREAT! And he's very proactive, and he listens to me!! :)

He's the one who diagnosed me with lupus. When I first came to see him I brought him lots of my medical records and he listened to me and looked through my old blood tests and decided to give me more blood tests. I came back a couple of weeks later and even though my anti double-stranded DNA antibodies were high, my ANA was negative. So he said I didn't have lupus. Of course, I was happy about that!

But I kept feeling worse and worse and worse. Then one evening I saw myself in the mirror and I had a flaming red malar rash! So I took a picture of my face and emailed it to him....he responded by saying to come in to see him right away.

After further discussion of some of my various lupus-y symptoms such as photosensitivity and nose-bleeds, he told me that even with the negative ANA he decided to give me a clinical diagnosis of lupus, because of all of my symptoms, the malar rash, the anti-DS DNA, and my family history of lupus. He told me that all of my neuro symptoms, everything, were probably due to a lupus flare, and promptly increased my prednisone dosage.

OK....more pred did seem to help a little bit, but I'm still having vertigo, vertical double vision, blurry vision, difficulty with balance, etc. In fact, two of my doctors have now told me I should no longer drive!! :(

The DMV is in the process of yanking my license. The hearing is next week, but since the neurologist said in the paperwork that I shouldn't drive, I don't think that the DMV will argue with him....I'm sure I'm going to lose my license.

I'm still not convinced that all is due to lupus....maybe it is, maybe it isn't. My rheumy thinks I have CNS lupus. But one of my blood tests for Lyme disease just came up positive! I know Lyme disease can cause neuro symptoms too....and can trigger autoimmune diseases. I'm currently waiting for results of a more sensitive Lyme test (Western Blot) to come back.

Anyway, I keep hoping and praying that I will someday know exactly what is wrong with me, and that I will figure out a way to get better! And I hope and pray the same for you! :)

Sorry for my verbosity!! Happy Holidays!
(((hugs)))
JoAnn

Hey Susan! Sorry for the delay! My story...started 3 years ago when I was 19. had extreme joint pain...couldnt sit down on the toilet without help, pull up my bed spread, trouble walking, rasing my arms...pretty much every joint and most muscles were affected. i was extremly active, playing basketball, volleyball, pretty much anything outdoors. That all came to a crashing halt. I had to wait 3 months for my works health insurance to kick in. I went straight to a rheumy because I thought I had RA...3 of my grandparents have/had it. He did blood work and 2nd apt with him said I had Lupus. Sent me home with a brochure to read about it. Well to sum up the next 3 years, new rhuemy who is AMAZING! Started seeing coke colored urine, foamy, started retaining fluid and was getting up 5-6 times at night to use the bathroom. Mentioned it to my rhuemy, she did blood work, found out I was in kidny failure and sent me to a nephrologist. Had a biopsy and 3 days of 1000mg solumedrol in the hospital and then sent home on cellcept and 80mg of pred...Since then my kidneys have failed 2 more times even with Cellcept and then moving on to Cytoxan. Im on 50mg of pred daily and get IV's of Solumedrol every month to keep things from getting worse. I have gained 80 pds since jan from the pred, which is what hurts me the most out of this disease. No one recognizes me and whats worse is my rhuemy said my lupus is being extremly stubborn and has been in contact with other doctors with more experience with lupus and they all agree we are doing everything we can right now. Even on high doses of pred, my joints are still swelling up, kidneys mesed up an I am looking at another kidney biopsy in the near future to see how much permanent damage there is. I am no longer in school and can only work 1/2 days at work. There is suspicion I have brain involvement but I have refused an MRI because I don't want to know if Lupus is atacking another organ. I figure I am already on the meds for CNS lupus so why give me something else to worry about.

I have found the most important thing with AI diseases is to try your hardest to keep a positive attitude. Humur always seems to help a little to...and make sure you can laugh at yourself!

my story begins when I was 13 almost 14 in the early nineties, It began with weird rashes and sensitivity to the sun. Then I developed mild chest pain. Then my right side began to hurt horribly. My joints ached. Mouth ulcers soon followed. During all this I was MISDIAGNOSED as having an ulcer- in 2005 we discovered the pain in my right side for all those years was my gallbladder being attacked and slowly shutting down. Over the years I had pleursy, pericarditis, a mirad of general symptoms but every doctor I saw said it was all in my head. When I was 28 in 2005 I decided to try one last time to get a doctor to listen to me and believe me. I got my miracle because within minutes of meeting me and seeing the pictures of my rashes and the evidence of my swollen joints and medical history I was diagnosed and treatment begun without blood work even being an issue. All along my negative ANA had been the one thing that made the doctors think it was all in my head. It took almost 15 years for me to get treatment and help. As a result I have permanent damage and the disease progressed much further than it should have. It is likely that going untreated is why I developed other autoimmune conditions- at least according to my old rheumy who saved my life several times through her skill and willingness to look beyond the obvious. She recently left the state due to a family emergancy and I was forced to seek a new rheumy. I may have gotten lucky a second time if my first visit with him is anything to judge by. There is a lot more to my story but I am not feeling well right now so I condenced it to the bare facts and left out a lot of detail.

I will be following up with the new Rhuematologist (that I saw for a consultation a couple of weeks ago) and a new Nuerologist.

The more and more I am reading, the less I feel I have lupus. My ACA was only positive once, and I guess that isn't a significant reading (has to be positive twice and at least 12 weeks apart from the testing).

I sounds like Fibro and MFS. But you get so many different symptoms depending on which website you go to.

Is Lupus primarily the pain of the joints???? Or the muscles too? My biggest complaint is numbness/weakness/burning in the muscles mainly.

Thanks you all.

Hugs,

Susan

Lynnwood -

I emailed lupus.org (lupus foundation of america) and asked a question about ANA. Here is part of their response.

"...The ANA (antinuclear antibodies) blood test is a sensitive test for lupus, since these antibodies are found in 97 percent of people with the disease. When three or more typical features of lupus are present – such as involvement of the skin, joints, kidneys, lungs, heart, blood, or nervous system – a positive ANA test will confirm a diagnosis of lupus. However, a positive ANA test result doesn’t always mean that someone has lupus. It can be positive in people with other illnesses, or even positive in people with no illness. The ANA can also change from positive to negative, or negative to positive, in the same person. Doctors trying to diagnose lupus will often look for other specific antibodies..."

I fixed the link, it is to a page within lupus.org - the information is from the same source.

Why do I feel like you are trying to argue with me?

I base my posts on what is stated there and at the American College of Rheumatolgoy website and the CDC, as well as what I've learned from 5 years of reading EVERY post on this website and hearing about the experiences of everyone who has posted here, including personal accounts of what everyone's doctors have said as well as my personal experience with rheumies and lupus.

I'm sorry, but I *do* have lupus and my time and energy are limited, as with many of us suffering from this illness. Many of us on this forum have given our stories numerous times and these can be found by browsing the pages.

Be well,

Oh my...I am VERY sorry if you thought I was arguing with you. I sincerely was not trying to argue with you. I apologize if I came across that way. That honestly was not my intention. I am very happy to have found this forum. I appreciate all of the women/men on here who have helped me.

I was not questioning you diagnoses at all. I am just trying to find one myself. Please forgive me if I was rude in anyway.

Thank you for your time.

Susan