Discussions By Condition: I cannot get a diagnosis.

Could this be lupus??? Please help.

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: kmich888
  • April 28, 2007
  • 08:07 PM

My story is a long one but I will try to condense it :o I am a 36 yr old female. I am overweight, but am very active. I work and care for my 3 children and I walk at least 1 mile everyday. About 6 years ago I got a rash one evening after being in the sun most of the day. This rash was only on areas exposed to the sun. Very itchy. I thought I had an allergic reaction to something I ate or a soap I used. NOT SO. This rash continued to happen with every sun exposure, then I began having joint pain and swelling in my hands and wrists. I got so bad some times that I literally could not use my hands. :( This went on for at least a year before I broke down and went to the dr. for it. (it had lessened during winter months) My dr. immediately did blood work for ANA and sed rate but it all came back normal. The thing that made him suspect autoimmune was this "butterfly" shaped rash across my nose and cheeks along with my other symptoms. He went ahead and put me on prednisone and I improved. But eventually the symptoms recurred and worsened. I began having chills and fever and a strange nagging ache in my back on the right side. Over the next year or so it progressed to full fledge pain and I was hospitalized. They suspected kidney stones, but it was not. Eventually they did find that the right ureter to my kidney was dying and that it had blocked off. Had many surgeries the last in 2005 to correct this and it seemed successful for about 10 months. No kidney pain but still the other symptoms. Then in 2006 it all began again and now my left kidney is affected. I am going to a different rhuematologist next week and have been looking for answers for about 6 years now. Please respond if you can offer advice or information in any way.:)

Thanks,

Kaylene

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21 Replies:

  • Hi Kaylene,Yes, it does have a Lupus sound to it. Right down to the kidney trouble. I am glad you are going to another rheumatologist, since you haven't been diagnosed yet.Generally, lupus comes in episodes where things get worse for a while, but also, there are times when things aren't all flared up. My understanding (limited to what I learned when my mother-in-law was still living, and she had lupus) is that going on prednisone is good for the times when you have a flair up, but shouldn't be used in an ongoing basis. Steroidal anti-inflammatories are powerful medicine, and can be very helpful, but they are also seriously ******n your body.I heartily suggest that you find a lupus group near you through this website: http://www.lupus.org/chapters/locator.asp. Whether you have it or not, they will be your best source of information. Maybe it will turn out that you have some lupus-related kind of thing, that is slightly different, and that is why it has been so hard to diagnose. But your symptoms are so much like lupus, that even it the doctors can't label it "lupus" definitively, it would still help to have other people who go through this sort of thing, to talk to and get advice from.Please do post back and let me know if you find out anything more. Best,Shula
    Anonymous 42,789 Replies Flag this Response
  • honey, lupus is often confused with ME Myalgic Encephalomyelitis...go to www.ahummingbirdsguide.com look at symptoms page...write down as many as you have, print article and take it to Dr. if you have a significant number of listed sx
    mommy cat 1,654 Replies Flag this Response
  • Hi mommy cat,I've just read through the M.E. website, and I seriously do not see how lupus and M.E. could be confused. Particularly the set of symptoms this woman has posted.Meanwhile, it seems to me you are posting something about this website on so many threads...what is the story with that?Best,Shula
    Anonymous 42,789 Replies Flag this Response
  • joint pain, swelling, butterfly rash you can't see how these are confused?? ME is caused from a virus. There have been 60 outbreaks since 1934. There was a huge outbreak in the 80's It's kind of coincidental that there are so many people on this site with ME sx yet not one, including myself can get or could get a diagnosis. People are seeing allergists, rheumatologists, endocrinologists, GI specialists ect...this disease affects several body systems. Perhaps you did not read the full list of symptoms. This woman's are all there. I believe this to be of epidemic proportions. Kinda strange, so many people, same sx, no diagnosis?? you tell me...There are so many people with sx and yet several are referred to psychiatrists...Wouldn't it be great if we were all just crazy??????????????????????
    mommy cat 1,654 Replies Flag this Response
  • Shula...my story 4 years ago I started with flushing of upper body, Dr. blew it off as perimenopause. I went back, it got worse...blew me off again. 3rd time I demanded I see a specialist. Went to endocrinologist diagnosed with Carcinoid Syndrome Went to Roswell in Buffalo NY...No carcinoid. another endo..gi specialist meantime I'm having cramps, diarrhea, flushing, vomiting, vertigo, tinnitus, stroke-like sx, muscle and joint pain and weakness, night sweats, nightmares ect... A few days ago I decided I would google symptom checkers I entered diarrhea, flushing, night sweats, nightmares...I found the ME site. When I read the list of sx I was so excited that I had found a disease that had all of my sx...I thought after a while that maybe they were right...maybe I was crazy. Please forgive my feverence in this matter but like I said...so many people, same sx???? kinda' scary I've been a nurse for 15 years and healthy as a horse until 2-3 yrs ago when I began to get ill and catch everything that came down the pike...Also, healthcare workers, teachers ect are more susceptable.Hope this clears up what appears to be my madness on the issue...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Have you been checked for Lyme Disease? It's just a thought. I've heard it can be hard to diagnose and I know rash, joint pain, & swelling are symptoms. It might be a stretch but worth at least checking into if you are having trouble finding answers.
    Jean Marie 38 Replies Flag this Response
  • Ijoint pain, swelling, butterfly rash you can't see how these are confused?? ME is caused from a virus. There have been 60 outbreaks since 1934. There was a huge outbreak in the 80's It's kind of coincidental that there are so many people on this site with ME sx yet not one, including myself can get or could get a diagnosis. People are seeing allergists, rheumatologists, endocrinologists, GI specialists ect...this disease affects several body systems. Perhaps you did not read the full list of symptoms. This woman's are all there. I believe this to be of epidemic proportions. Kinda strange, so many people, same sx, no diagnosis?? you tell me...There are so many people with sx and yet several are referred to psychiatrists...Wouldn't it be great if we were all just crazy?????????????????????? I completely understand your "madness" on this issue (read your second post, too:) ). I also have been sick for a long while and can't get a diagnosis...in fact, you posted on my thread. I did go to the site you referenced. Here's the problem I have with it (and I mean no disrespect) - but honestly, it has almost every possible symptom of any disease or condition I've ever heard of. So it seems to follow that almost anyone who is having multiple symptoms is going to find something there. I'm not saying it's not possible ME could be the problem for many - I'm just a little skeptic. I have to admit I didn't get to the part about how ME is diagnosed. Is it a "clinical" diagnosis (hate those) - or is there a specific test? I'll have to go back and look. Now that I understand why you are posting on so many threads, I think it's really quite wonderful that you have taken the time inform people after discovering something you believe might help.
    Jean Marie 38 Replies Flag this Response
  • mommy cat,I keep seeing "extreme pallor" for M.E. and she doesn't mention this at all. Also, M.E. has obvious problems with physical activity and exhaustion, but this person says she is "very active." So while it is true that M.E. (according to the website) can be confused with lupus, I don't see it here.Shula
    Anonymous 42,789 Replies Flag this Response
  • Shula, a person does not have to have every sx on list to have the disease...if you read sx list you would have seen agitated exhaustion (tired BUT wired) I know, I live it every day...I know the odds of so many people having the same thing are low, but the odds of so many complaining of ME sx is just a little too coincidental for my taste...I could never figure out how excessive gas and sneezing could be part of the same disease process but for the past year, I experience it every day, sometimes several times a day...I said to my fiancee that they had to be related somehow to my sicknees but could never figure out how...until now...Be well Shula and best of luck to you...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Thank you Shula, mommycat and Jean Marie for your responses. I will take everything you have said into consideration. :) I want to go to this new rheumatologist armed with as much information as possible. The previous rheumatologist told me that my pain was because I was taking Allegra D, I thought he might be right, I went off of it and felt better but it must have just been one of what I call my "good" weeks because it wasn't long and I was back to having rashes, pain, swelling. I've kinda lost respect for so many in the medical field because they have made me feel as if this was "all in my head":mad: I wasn't until the urologist actually put a stint in my kidney that they even began to take me seriously. They had to see it to believe it. Till then I was just an over emotional female. I feel better just to have a place to vent. I actually contacted my nearest lupus chapter by email and did not get a response. Unfortunately I live 2 hours from the nearest meeting place. Thanks again, Kaylene:)
    kmich888 2 Replies Flag this Response
  • Have you been tested for Porphyria? This would explain the rash and sensativity to light.
    Anonymous 42,789 Replies Flag this Response
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  • Hi Kaylene,Yah, unfortunately, doctors (most, though not all!) tend to have easily bruised egos, and think they are more knowledgeable than everyone else. So if they can't find something wrong with you (again, not all docs) they will assume that the problem is there isn't really something wrong with you.After I got hit by an SUV (I was in my car, but the SUV hit me where I sat, and crushed the car in on me) my left side wasn't moving. I could feel it, but couldn't make it do anything. I was pretty worried, and asked why my left side wasn't working. You know, they couldn't find any explanation for it, so they told me I was lying. They even went so far as to accuse me of pretending so that I could have a better legal case! Honestly, the way they treated me was more emotionally painful than the accident itself. :mad:But stay with it. And never feel "stuck" with a doctor who doesn't take you seriously. There ARE doctors who will listen, and will not say it is "in your head" even if they absolutely cannot figure out what it is.Regarding your lupus chapter...sometimes emails for such groups are only checked like once a week. Meanwhile, check out this Yahoo list...I don't know of it personally, but it sounds like something that might be useful for you: http://health.groups.yahoo.com/group/LUPIES/Best,Shula
    Anonymous 42,789 Replies Flag this Response
  • Hi Kaylene, Yah, unfortunately, doctors (most, though not all!) tend to have easily bruised egos, and think they are more knowledgeable than everyone else. So if they can't find something wrong with you (again, not all docs) they will assume that the problem is there isn't really something wrong with you.Amen! Most doctors ARE like that. Whatever happened to the good old family doctors who would keep working with you until a solution was found? After I got hit by an SUV (I was in my car, but the SUV hit me where I sat, and crushed the car in on me) my left side wasn't moving. I could feel it, but couldn't make it do anything. I was pretty worried, and asked why my left side wasn't working. You know, they couldn't find any explanation for it, so they told me I was lying. They even went so far as to accuse me of pretending so that I could have a better legal case! Honestly, the way they treated me was more emotionally painful than the accident itself. :mad:Unbelievable! How awful. My daughter once went to a doctor's appointment with me. After, she said she didn't know how I could handle the way the doctor treated me (my family KNOWS I don't make up symptoms). You are right...it's emotionally very hard to handle. But stay with it. And never feel "stuck" with a doctor who doesn't take you seriously. There ARE doctors who will listen, and will not say it is "in your head" even if they absolutely cannot figure out what it is.I'm still looking. I've oftened wonder if doctors ever take the time to research for their patients. It isn't possible for them (even specialists) to know everything. I get the feeling if they can't figure it out during your 10 minute appointment, you're just out of luck. Sorry, this is a rant more than anything else. It is somewhat cathartic tho.:) It took 2 1/2 years for doctors to discover the incredible jaw pain I was having was an abscessed tooth. Now if they could only figure out the rest of it....
    Jean Marie 38 Replies Flag this Response
  • The previous rheumatologist told me that my pain was because I was taking Allegra D, I thought he might be right, Kaylene, do you know why he thought Allegra D could be causing pain? Jean
    Jean Marie 38 Replies Flag this Response
  • Kaylene...go to www.ahummingbirdsguide.com go to L side of home page to list of symptoms...then go to bottom of first paragraph, there is a summary of symptoms...write down as many as you have...the ones you listed are all there...good luck...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • I'm almost afraid to post regarding this because I don't want anyone to jump at me for my thoughts regarding these symptoms. I would just like to ask this woman if she had a double stranded dna test when she was tested for lupus. My level was 169 where the norms here are 39. Yet, 2 doc's say "yes" to lupus and 2 other doc's say "nope"...no lupus. I also have a medical history so long I won't go into everything...just the most recent....In 2005, on a vacation, I got so ill.......muscle pain, swelling, could barely get out of bed (and we were in MAUI for cripes sake!!) I surely didn't want to miss a day there....but it got to where I could barely walk. I'm very thin....yet could tell that there was fluid under my skin...when we got home I went to the dr. and had put 10lbs on in 24 hours....then another 5 lbs. the next 24 hours...I was put on diuretics and sent right to a cardiologist of course...had the whole work up...dx was "full body edema NOT cardiac related" was sent to a nephrologist for kidney problems.......nope...but that dr. thinks I have lupus due to the Double Stranded DNA test......sent me to the looney rheumatologist who also thought it was lupus, but the rash I had was on both legs from the knees down....and it lasted 3 days and went away and has never come back. Yet from that day to this second, I hurt so bad to stand on my feet...My hands are so swollen....about 2/3rd's of the edema comes off and then goes back on...I fight with it daily. Even being thin and hearing from everyone "what are you so worried about...it's not like you are heavy" THAT infuriates me!!! I've had 7 back surgeries with multi level fusion...RSD, arachnoiditis (has nothing to do with spiders :) but is very painful like the RSD that burns so badly when I'm having a flare up I can barely have a sheet on my skin. Like I said...I have a long history of so many problems but I think this one takes the cake. A week ago I noticed a lump around my naval. Dr. said he thought it was a hernia of the fascia due to all the abdominal surgeries I have had over the years. He said to keep an eye on it.......3 days later it was about 4 inches long..very hard...and very painful. Now dr. said he wanted an abdominal ultrasound to check for mass....that was last friday. A couple hours after the u/s my doctors nurse calls to say the Dr. wanted me to have a CT scan last monday. I asked why, she said "not sure" but "I hate to tell people bad news." Well...she couldn't say that and not tell me what the heck she was talking about. I told her to read the conclusion to me. We are fairly good friends (not socially, but because I practically live at their office) so she said "blockage in the common bile duct of the pancreas" She again said she was sorry. My husband and I didn't sleep the entire weekend and neither did the few family members I told. So monday I had the ct scan which was an event in itself. I hadn't been given the contrast to drink, etc. etc. But they let me drink it there and then started an IV...put some stuff in my veins......couple hours later my doctor is telling me I must have my gall bladder out...like NOW. HUH? When did the gallbladder get involved? I told him what I was told...he hemmed and hawed around, but just kept saying I needed my gallbladder out. So I ordered my u/s report and the ct scan report (won't get it until Tuesday) so I can see exactly what they are talking about. They have taken enough organs out of me to start an entirely new person!! Not just this doctor, but over the last 30 years. I'm seeing him on tuesday. All I want to know is can this fluid retention have anything to do with a bad or diseased gallbladder?? The sx I have are pain between my shoulder blades (which was hard to distinguish due to my back problems, but is noticeable now) and nausea (constant) and abdominal swelling or bloating or whatever you want to call it. I'm sorry to have written such a long email......I think I wrote something regarding this the other day but I didn't go into detail. Also, you need to forgive my memory problem because when I was hit by a truck in 2002, I had a closed head injury that caused vertigo and short term memory loss. The vertigo only lasted 3 months.....and the memory is better but not all the way. So if repeat myself it's due to that.......Thanks to everyone for their patience, Elizabethanne
    elizabethanne 2 Replies Flag this Response
  • Liz...most if not all are ME sx...even vertigo and memory loss they blame on an accident...go to www.ahummingbirdsguide.com to L on home page is sx page...click it...at bottom of first paragraph is link to summary of symptoms...go there be sure to scroll all the way down as you read...there are 2 different paragraphs...one tells general/ neurological sx but if you go further down, you will find several other sx...I have several and after being sick for 4 yrs and on this quest for 7 mos...I found a dr who listened and am currently being tested for it now...Be Well...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • I'm not in any way connected to the medical field and therefore not qualified to diagnose anyone. MC, I went to the ME site and went further to a paper written by a British doctor. The main point he stressed was for someone suspected of having ME to get an MRI and SPECT. He said that that was the first key to diagnosis and to find the involvment of coritcal damage.The other thing that I find remarkable about this whole website, is the number of people with similar vague and varied symptoms (to include myself). I've always attributed mine to the fact that I eat mainly crap. Candy, fast food etc... I come from good stock though and that is the only reason I'm alive-----that and the fact that I rarely go to doctors (last time was 22 years ago). I do believe that the food and enviornment we live in plays a big roll in these widespread symptoms we all have. Add to that the chemicals we surrond ourselves with and voila' your immune system is weakened to the point that any and all virus and bacterias have a field day. Anyone here read Cayce??? I would trust him before any medical personnel. Sorry for the rant
    Anonymous 42,789 Replies Flag this Response
  • Dear Mommy Cat,I can't find the place you want me to go to. I've clicked on the link but what you explained I can't see. Can you send it to me in some other way? This Wrong Diagnosis site keeps telling me I'm unregistered but they take my user name and password and sign me in. I don't understand it. But back to your email............my vertigo and the memory loss wasn't there seconds before the truck put my trunk into my backseat and knocked my head around in every direction. So I know that was from the accident. BUT.......all this other stuff..........it's gone with so many different diagnoses' and I'm sick of it. All my tests are so abnormal........and the doctor's are scratching their heads while I can barely walk on my feet or open and close my hands among all the other things I said.........mostly the bloating, pain between my shoulders, etc. etc. etc. I really appreciate you writing back. Wish I could figure out what you wanted me to do though. sincerely,Liz
    elizabethanne 2 Replies Flag this Response
  • Liz...go to the hummingbird site...to L on home page are links...click on ME symptoms list...when it takes you to that page...read just a little of the beginning and the scroll down...as you read sx...write down every one that pertains to you...there are several...including things you never really thought of as a symptom. When I read the list I didn't know what to do...everything from my excessive gas to my sneezing was listed...been a nurse for a long time and could never figure out how gas and sneezing were connected...till now...I'll keep int ouch...mommy cat
    mommy cat 1,654 Replies Flag this Response
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