Discussions By Condition: I cannot get a diagnosis.

I think I may have Lupus

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • April 25, 2007
  • 01:57 PM

Hello

I'm Kate and I've been very ill on and off now for the past several months/year. I'm a 17 years old girl and I've been suffering from the following symptoms on a regular basis: aching, malaise, extreme fatigue, low-grade fevers, chills, extreme loss of appetite, nausea, abdominal pain, diarrhea (or sometimes constipation) and irregular menstrual periods/ sometimes none at all. (For the past several years)

Having these symptoms so often and for so long, I've gone to see a doctor on multiple occasions. A few time during my school courses I've passed out and was rushed to the hospital. I've been diagnosised with multiple things that keep changing from anxiety to hypersomnia to general allergies (because I often suffer from shortness of breath or sinus problems). I've also been tested for anemia on many occasions as well as diabetes; however, I came up negative for those as well. Recently, I was told I have eczema. It's on my shoulders, thighs but mostly face; though the doctors aren't sure if it really is eczema. I thought it was just a general rash or acne but I try deperately to get rid of it or treat it and it still doesn't go away.

After doing some research I found that many of the symptoms I experience are often associated with Lupus. I know there is a rash on the face that is part of Lupus but I'm afraid I can't tell if what I have is considered the same thing (it is; however, mostly on my cheeks). Is it possible I might have this disease, or should I bring up this to my doctor? Some opinions or advice would help me greatly.

Thanks you,
Kate

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7 Replies:

  • Hi Kate,Lupus is one of the most difficult illnesses to diagnose. I was finally diagnosed about 5 years ago after seeing every "ologist" around. there is no test for lupus so doctors look at your symptoms (they don't all have to occur at the same time. many of mine occurred over several years.) there are blood tests that doctors use, but none of those tests are definate either. the one blood test that i would recommend is the ANA. doctors usually look more seriously into the possibility of lupus if your ANA is positive. my ANA is negative because i also have another condition, but the rash on my face was a red flag to my doctors. the only thing that really took away my rash were high doses of steroids. have your doctor do bloodwork, and definately discuss the possibility of lupus. best of luck and if you would like to talk more feel free to e-mail me at sunflower21@netzero.net.karen
    karen2 7 Replies Flag this Response
  • Dear Kate...I have written to 2 other members so far with this info. There are several of us having similar sx as you. Please check out ahummingbirdsguide.com go to the sx list. read it and write down how many sx you have. I have most of them. The disease is called Myalgic Encephalomyelitis and it is caused from an outbreak of a virus. It is similar to lupus and the facial rash is one sx. ahing, malaise, fatigue, muscle and joint pain, low grade fevers, chills, loss of appetite, nausea, abdominal pain, diarrhea/constipation, irregular periods or none at all are all also sx of this disease. check it out and let me know how it goes....best of luck Kate. mommy cat
    mommy cat 1,654 Replies Flag this Response
  • reply to Karen and Kate...both of you please go to www.ahummingbirdsguide.com look at sx list, often confused with Lupus, includes butterfly rash...confused with chronic fatigue, epstein Barr virus, fibromyalgia...please check it out...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • For the past 10 years I've been sick . I've been so tired for years pains in legs, wrists, elbows. Always VERY VERY Tired. Ten years ago I've had stomach problems not going to the bathroom but once a week hopitalize 3 different times just aged colon about 90yrs olld then. Now my bladder is age about 60 yrs old 4 years ago. I have painful periods severe pain in lower back travels down my legs. I lost some of my hair in 2004 , Dr. never thought anything of it. I've always had a slight rash on left side of neck,recently it went to right side itchty, red . About 1 month ago my scalp very very painful red itchty bumps sveral of them with hair loss around them. I've been tested 4 times for Lupus Ana never shows positive. I just went to demotlogist last week going to check for Lupus again.. I have two family members with Lupus. In 2003 I was told I have hypoinsomia its getting worse I'm only sleeping 3 hrs a night sometimes. Im 36 yrs old I'm tired of always feeling this way and feel like everything is always wrong. I never miss nothing wheather its family parties to my 2 children that plays 3 sports each. I just want the right anwers after all these years. I go tomorrow to have lab work done. can any one relate to me .
    Anonymous 42,789 Replies Flag this Response
  • The original poster Kate with the flu like symptoms and other symptoms sounded as if she probably has chronic fatigue syndrome (which Myalgic Encephalomyelitis can be a subgroup of). Very classical symptom complex for it going on. i cant say what the poster before me is likely to have.. it's not so clear cut.
    taniaaust1 2,267 Replies Flag this Response
  • Hi Im 20 Im Female.2 Year Ago I Had A Routine Blood Test Done After Having Too Many Strange Symptoms LikeStiffness In My Knees And Elbows Cripling Pains In My StomachAbnormal Bloating(Went For A Ultrasound N My Spleen Was Swollen)I Attend Physio And Podiatry For My Feet (Got These Sole Things For My Shoes VERY Helpful)Also Had To Get My Tonsil's Owt Bcoz They Wouldnt Stop Swelling.Then A Week after Gettin Them Owt The Wound Exploded When I Sneezed N I missed My GCSE'sThen Outta No Wer I Got Depression. Thats Where The Blood Test Came InTo It..They Told Me I Was Double JointedI Have Sticky Blood SyndromeMy Anti Throbin III Level Is Too High And I Have LA Disease Summet Bowt BorderLine c4I Kinda Wasnt Buying It N Gave Up Stoped Goen The Docter Threw My Self Ryt Into WorkAny Who... Ive Recently Got A Rash On Both Arms At The Top Like Tiny Lumps/SpotAnother Tiny Patch Of A Rash On The Top Of My Thigh Like Rough Scaly Skin.I Also Have A Huge Vein(Came Owta NoWer) Comeing From The Corner Of My Lip Half Way Down My Jaw Line And Down My Neck And It Splits In 2..Under My Vein On By Jaw bone Is A Lump N Lump times When I Press It I Get Like A Nerve/Twitch In My Lip.God Knows What All This Is.. The Docters Where I live Know Nothing.There Not As Understanding As I need Them To Bee.This Ill Achey Thing Strikes Me Owta no Wer I Havnt Felt Ill for a wHILE Recently When Standing As Normal My Leg Muscles Shake N Feel REALLLT Weak..Im Scared. I Work N Enjoy Life..
    Anonymous 42,789 Replies
    • September 12, 2010
    • 01:12 AM
    • 0
    Flag this Response
  • I am going thru a terrible time. I recently moved and then got sick. I was tested at my local clinic and my ANA was positive, went to a rheumatologist and the ANA was negative. I have the rash on my face, which they call the butterfly effect. My hands, arms and shoulders swell up and turn red with fever and inflammation. My hair is thinning. I ache continuously in my joints especially my upper body. I am fatigued nearly all the time and can't sleep at night. In the past 2yrs I've experienced stomache problems, been diagnosed with acid reflux and IBS. Last year I also had a terrible time with my kidneys. They kept calling it a urinary infection or kidney infection. They never could diagnose it and kept giving me antibiotic shots to treat it. They did say I had traces of blood. Also I bruise easily and now I keep this cough that seems to contain phlem from my chest. I have another appt on the 29th with another rheumatologist. Does this sound like lupus to you or what is your opinion?Hi Kate,Lupus is one of the most difficult illnesses to diagnose. I was finally diagnosed about 5 years ago after seeing every "ologist" around. there is no test for lupus so doctors look at your symptoms (they don't all have to occur at the same time. many of mine occurred over several years.) there are blood tests that doctors use, but none of those tests are definate either. the one blood test that i would recommend is the ANA. doctors usually look more seriously into the possibility of lupus if your ANA is positive. my ANA is negative because i also have another condition, but the rash on my face was a red flag to my doctors. the only thing that really took away my rash were high doses of steroids. have your doctor do bloodwork, and definately discuss the possibility of lupus. best of luck and if you would like to talk more feel free to e-mail me at sunflower21@netzero.net.karen
    Anonymous 42,789 Replies
    • September 14, 2010
    • 09:04 PM
    • 0
    Flag this Response
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