View Full Version : Got diagnosed so fast...
08-31-2006, 03:13 PM
:( I suddenly became very sick during March '06 (had frequent high fevers, swollen/painful lymph nodes, loss of appetite, weight loss, bodyaches, fatigue, headaches, weakness, swelling in my fingers, and some hairloss). I visited my family doctor twice during this time, and she prescribed me 2 different antiobiotics which didnt help me at all. She thought I had a bad case of the flu. I had bloodtests done, but nothing was found. Then I developed a red rash across my face and behind both my ears. I immediately went to a dermatologist, and she quickly suggested that I may have lupus. She gave me some cream to put on the rashes. She also took a skin biopsy of the rash behind my ear to see if it was lupus. I also had bloodtests done. All the tests came back positive for SLE. She suggested I see a rheumie, so I did. After more tests (blood and urine) it also came back positive for SLE. Protein was found in my urine, so my rheumie suggested I see a nephrologist. After more tests, he wanted me to have a kidney biopsy to see how bad the lupus affected my kidneys. My nephrologist said it was detected right away, Stage 1 nephritis, and I started on CellCept right away.
:? All of this happened in a month... Did anyone else get diagnosed right away with SLE? I know there are others who haven't been diagnosed yet or took months or even years to be correctly diagnosed. Does that mean I had SLE already, but the symptoms hadn't flared up yet until now?
08-31-2006, 05:39 PM
Well, once I got to a doctor that didn't think that my albumin was at 0 (when it's supposed to be at like 5) because the water in my body was diluting it and thatmy kidneys were fine and that I just needed to lose weight... It took them a week to diagnose me... I wasted 6 months on that stupid woman for her to tell me that I was fine when she was literally killing me.
09-01-2006, 08:20 AM
No...it took me almost a year to get a diagnosis. But, the fact that you were diagnosed so quickly gives me hope. Maybe Lupus is being taken much more seriously by the medical world and doctors are now willing to start testing for it immediately: as opposed to telling us (like Solesinger) that something else is wrong and almost killing us or telling us that it is "all in our heads!"
I hope that your quick diagnosis is a sign of things to come!!!
I wish you the best
09-01-2006, 09:02 AM
I was diagnosed rather quickly this year. I first went in to the doctor in January and got my diagnosis the first of April. But I think the only reason that I did was because by February I just knew in my gut that I had Lupus and REALLY pushed the doctors to get tests done and referrals. I was lucky to know what Lupus was and what the symptoms where since I was tested for it repeatedly as a teenager. Still even with that knowledge, it took me six months to put everything together for myself. Still at the time when I was in extreme pain, three months felt like FOREVER!!!!
I'm glad that you were diagnosed quickly. That's the way it should be!
09-02-2006, 09:37 AM
I too was dx in a month. I had had problems for a long time but never said anything to anyone. It was my gyn that first brought it up. I went to my gp, not telling her what the gyn said, then she brought up lupus too. Ran the bloodwork, and had a rheumy in a week. This was nov. of 2005. I am greatful, but it seems like I have gotten worse since the dx. Even with all of my meds, my labs keep going up. I'm getting ready to start metho inj. so maybe that will help.
09-02-2006, 04:30 PM
I had weird symptoms on and off starting in college, but I never took them seriously. I had already been diagnosed with endometriosis, and was taking Lupron for that, so I just thought it was side effects of the Lupron. I was also taking low-dose steroids for allergic asthma, which probably kept the lupus from flaring up. When I started getting really sick - I was in the middle of a huge case with very high stress - 16 hour workdays and tons of travel, so I thought it was just stress. I went to the doctor several times because I was so tired constantly and my joints ached like I was 80 years old. He laughed it off and told me I was tired because I was severely anemic, and my joints hurt because I was driving and flying too much.
When the nausea, non-stop vomiting and weight loss (30 pounds in less than a month) started, he finally admitted there was a problem but blamed it on my gallbladder. The surgeon he referred me to was the one who sent me to a rheumatologist. He told me immediately that I had an autoimmune disorder of some kind because my ANA levels were so high, but I also had high levels of the antibody for scleroderma, so he wasn't sure which disease it was. They finally decided I have both, but since I have more symptoms from the lupus (CNS and kidney involvement and some other funn things) , lupus is the ICD10 code they use for insurance.
09-05-2006, 07:25 AM
It took about 4 months and then I was diagnosed. I started to have symptoms in the fall of 89, they thought I had mono, was referred to Children's in Pittsburgh, had a bone marrow bx in Dec. 89 to rule out childhood leukemia and by Feb 1990 I had been hospitalized with Fever, letheragy, swollen lymph nodes, abd swelling and was diagnosed during my 9 day hospital admission.
09-28-2006, 01:30 PM
Last year I got sick. I notice it in June of 2005. I lost 50 pds in one month, my appetite change. I started to hate the smell of food. I began to walk very slow, my knees were hurting, my eyes had swollen, my face was swollen. I was in a different state. I was in so much pain my brother had to fly me home in December. I began to take bloodwork. My pcp told me to get to the hospital asap. I was severly anemic, low white blood count and had pneumonia. I was diagnosed in 30 days. That's how long I had to stay in the hospital. At least there is a dianosis.
10-11-2006, 09:22 AM
Hi. It literally took years for me to get diagnosed, because the disease for whatever reason progressed slowly. The doctors would only look at the blistery rash on my hands and say, oh, you just have Eczema. Yeah right. The Imuran that I am on now cleared it right up. Prednisone also cleared it up immediately. The Imuran has replaced the Prednisone, becaue I refuse to take that drug. I consider it to be to dangerous. I also take Plaquenil and Sulindac (Clinoril). I guess you have to get lucky and get a doctor that is knowledgeable and cares about your health etc. Hugs, Kathleen
10-11-2006, 10:37 AM
I too was dx quickly. In Feb I had a major flare that I attributed to strep or something. My pmp treated it with antibiotics. I continued to get worse with constant intense headaches, high fever, swollen glands ..... I went to the ER 3 times during a two week period. They did a lot of tests and gave me pain pills for the headaches. I was hoping to get admitted, but was sent home. Finally St Lukes admitted me and ran a lot of blood tests during my week stay there. I think the infectious disease doc figured out the lupus. I am very grateful to St Lukes for admitting me and getting a dx where my pmp and other ER visits were of no help. I am now on Cellcept and Hydroxychloroquine and see a Rhummy. My symptoms prior to the major flare were minimal, but now that I think back I can see my tiredness and joint pain as symptoms of the lupus.
10-11-2006, 12:04 PM
I am glad that they figured out what was happening and were able to help you out. I think that doctors should listen more closely to female patients then they tend to do. Oh well. I am glad that they finally dx me and I was able to get treatments too or I don't believe that I would be here now. Hugs, Kathleen
the wingless one
10-11-2006, 06:01 PM
I was also diagnosed quicky once I actually went to see a doctor. I had been having joint pain and swelling for months during my senior year in college but waited almost an entire year before it got bad enough that one night I woke up in the middle of the night and was in so much pain everywhere that I couldn't move any part of my body without screaming and crying. My fiance-then-boyfriend told me I couldn't go to work and had to see a doctor immediately so I called my cousin who is a doctor and he told me to go see a rheumy. I looked one up on my insurance website and even though it normally takes 4 months to get an appointment with him he was very compassionate and worried by my description of my symptoms and so he agreed to see me after-hours that same day. He was extremely thorough and performed a ton of tests (I got my blood drawn three times in that one week!) and within two weeks he had given me a diagnosis of lupus and sent me to a nephrologist because they found blood and protein in my urine. Two weeks later I had my kidney biopsy done and started on prednisone and CellCept. My doctor's said that I was pretty lucky because my lupus was at a stage where it was fairly easy for them to diagnose but not so far along that it had done any irreparable damage to my kidneys.
I think lupus is definitely becoming more well-known, I even saw a couple commercials about lupus on cable tv when I was living in Los Angeles (but not since I have moved so maybe they were only local commercials?). Also, I don't know if you guys ever watch House MD but have you ever noticed how lupus is almost always one of the first things he tests for whenever he gets a patient with weird symptoms that can't be explained? I think these are all great signs for those of us living with lupus!
the wingless one
10-11-2006, 06:10 PM
Just wanted to add, I still remember when my rheumy told me he was pretty sure I had lupus and added, "But no matter what you've heard, the majority of lupus cases are NOT fatal."
I was in total shock because I had never heard of lupus before and had not even thought that what I had COULD be fatal.
11-12-2006, 09:40 PM
For the fourth time in about 10 years I started with a raging UTI that rapidly became a 104 temp. The ER admitted me and they started antibiotics which didn't help at all. I had a buring red rash on my back and stomach that looked like a bad sunburn and was burning hot to touch. My face was swollen and covered in a red rash. After the GP couldn't figure me out they called the infectious disease guy who tested for everything under the sun. Several days into the hospital stay my muscles got extremely sore and weak (same thing that happen the previous 3 times). Finally they got a positive result when they tested my ANA. From there they referred me to a rheumy and after a month I was diagnosed and started on meds.
I think I must have had flares the previous 3 times I was hosptialized but no one picked up on it. I think the UTIs threw everyone off. So I was diagnosed relatively quickly the 4th time it happened but it took a long time if you count from the first real flare I guess.
Anyway I'm feeling so much better and now know what to look for. I have a medrol pack to shock the flare the next time I have what seems like UTI starting. That'll fix that darn lupus!! :-)
11-13-2006, 07:31 AM
My diagnosis was also pretty quick but felt like an eternity...I had a miscarriage in May and thought that I was geting arthritis in my fingers. At 36 and being very healthy, I thought it odd. Then in mid-June, I started to have massive pain in my feet that left me breathless when I stood up. Also my fingers kept acting up. After about 10 days I saw a GP. I was on vacation in London, England so all of this is not an easy feat. I then went to a rhematologist who after many blood tests and x-rays had no idea what I had. Then came the Lyme Disease diagnosis so I was put on heavy antibiotics as well as morphine for the pain. By this time, I was quite crippled up and could not lift my arms, move the sheet from my body when I woke up in the morning and the thought of my feet on a carpet with no slippers was unbearable. My little son used to put my slippers on for me when I got out of bed. I lost a ton of weight (which was fab as the baby weight from my last didn't ever come off) but my apt. was on the second floor with no lift and the morphine factor made everyday difficult...grocery shopping had to be well planned. The doctor saw that I was not improving but did nothing. At that time my blood work did not show anything as he did test me for Lupus. Strange huh? Finally, my labs were sent to Germany and the doctors there agreed that I did not have LYme disease. I was admitted to a hospital there and they worked day and night to find out what I had. They thought it was poliomyositis (SP) but then realized it was Lupus. That took 6 days and when that prednizone was given to me on the 5th day after 3 hours I felt 80% better. Now it has taken its toll on my body and I am FAT and puffy, losing hair but I CAN WALK and use my hands. I am tapering now and will start 7.5mg on Wednesday. Probably will have to do the kidney biopsy next month as the doc thinks the prednizone is keeping it at bay. Nobody knows what Lupus is where I am but a lot of women have it. I don't know the arabic word so all I get are looks and comments about my puffiness and how much weight I've gained but what can you do???I have been asked if I want to start giving lectures on Lupus from a personal view but I am not ready. I am just digesting this all myself....Before I was diagnosed I had heard the word "LUPUS" but knew nothing of it either. Now I tell everyone to get tested if they have symptoms..silly...I think I just want somebody to share this with....hence the babbling I do on these bulletin boards. Thanks to all of you for your support and I hope that our disease gets more recognition so that we do have to live in so much pain before being diagnosed.
Just something to add, I had pleurisy the summer of 2005 and they say that was probably the start that there was something wrong....
11-14-2006, 12:24 PM
:roll: I am so glad that you have a diagnosis. I remember last year around June I got sick. I had pneumonia, anemic, fluid around my heart, protein in my kidney, couldn't walk, fingers paining and also couldn't move the last two on both hands. then I had to have a blood transfusion. I wasn't thinking straight at all. I was out of it. Not only that I lost 50 pds in one month. Also, I had a white blood low count.
[size=18][b]Well, when I got to Rochester, NY I was admitted into the hospital where the symptoms I had described above started taking place. immedicately they put me on 20 mg of prednisone and cellcept 2 daily. I began to heal.
My current situation now is that i am not walking like I should. I didn't know that Lupus can affect your ability to walk. I do walk with a cane and sometimes use a walker for distant walking
I am not happy that you have Lupus. I know even though they did you have a name for it. I am glad that found a name for it. You will be ok. Just post as much as you can to get it out. I was just daignosed in January of this year. I have some good days and some bad days but you will get through it.
Peace and God bless you. :roll: it's going to be alright.
11-15-2006, 11:58 AM
I was diagnosed in June and this is November. In that time, I lost most of my hair, had a biopsy done, had two steroid injection sessions on my scalp, started plaquinil and broke out in hives and was stopped immediately...I itch on my arms, I have itchy patches on my now newly shaven head, and behind the ears. I had a welp on my chest with itching..., I had a miscarriage in early June, and now I am told I have a high chance to have sle because of my extreemly low while blood count and must get tested again. I have low back pain right now and only hope it's not the beginning of something with my kidneys. I am currently on no meds, I just e-mail my rummy anychanges. Thus I am still confused and in shock.
11-15-2006, 12:25 PM
I just read your post. I am wondering if they tested you for Discoid Lupus, I mean, because of the rash on your head and behind your ears. Is it like a plaque type of rash? I am just wondering. Also, did they do an ANA test and the other tests for Lupus. Just wondering.
11-15-2006, 12:57 PM
skin biopsy was first for discoid lupus, then blood work, however, no ana, only low white blood count and the skin evidence that it was speading beyond the typical discoid lupus. Per, my rummy at johns hopkins, she stated very few discoid spread to sle, however, mine is one of the exceptions since it went into the trunk of the body.
I know I have caught it early, but not early enough to have prevented the miscarriage in early June, and not earlly enough to save my hair. But, is it any less tramatic that I dont' have kidney failure or in the hospital at this point? :?:
Just want to know. Because I have questions and want to be directed to the right forum for answers.
11-15-2006, 01:22 PM
About 10% of people with discoid lupus will progress to full blown systemic lupus. Systemic lupus (SLE) can cause a low white cell count, so it is one of the hematologic criteria for the diagnosis of systemic lupus. When your white count is low, you are very vulnerable to infections, so it's important to take care of yourself, try to get plenty of rest, and avoid being around anyone sick if you can. If you have symptoms that indicate a possible infection, such as fever over 101, shaking chills, or flu-like symptoms, let your doctor know right away. There are medications other than plaquenil that are very effective for lupus, so hopefully, you will be able to start on other meds quickly. Since you had an allergic reaction to plaquenil, your doctor may want you to try Imuran or Cellcept. If you have significant scarring on your scalp from the discoid lesions, your hair may not grow back in those areas. But if the hair loss is from the lupus and not the scarring, it may grow back quickly once you start on meds. So don't give up on it yet!
11-15-2006, 01:31 PM
Thanks for your informed resonse. :D
The wig I'm wearing makes me look younger..but itches. I am looking for a wig cap for that. also I have night sweats. I don't know where that came from.
Oh, well. Just another day.
11-19-2006, 08:02 AM
Hi I just read this and see that you mentioned "swollen/painful lymph nodes" so is this probably what I have right now or is it sores in the throat... as you know you break out from fever blisters sores in mouth and I'm not sure what to do about the throat... Please help.