Discussions By Condition: I cannot get a diagnosis.

wondering if symptoms are at all consistent with Lupus or something else?

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: come on miracle
  • December 24, 2008
  • 09:32 PM

Hello everybuddy.....my name is Nicolette and I'm 20 years old....I'm not overweight and I'm not a smoker, drinker or drug user.

I've come to wonder if some of the issues I've been experiencing are possibly caused by Lupus, or some other autoimmune problem....I can't help but feel like some of the problems are a bit to coincidental to be singular issues, and I'm just trying to "put two and two together" :confused:

*I've had Raynaud's phenomenon in both my hands and feet for as long as I can remember, and it's gotten worse over time...despite the fact that my Dr. insisted I would "grow out of it". I don't know anybody else who has this, so I'm not sure if mine's more severe than many peoples..but it is actually pretty miserable...my hands frequently go from red to purple to sickly white...I react to any temperature change at all and experience numbness and tingling with cold..it's a little embarrassing because people are constantly asking why my hands are purple =(

*I've gotten "canker sores" in my mouth and gums for a while, sometimes they are painless and othertimes they're quite bad making it hard to eat and brush my teeth comfortably....

*I've never experienced a butterfly rash or severe photosensitivity which I know is often present in women with lupus...but I am somewhat sure that I have some early signs of arthritis developing...my hands are often stiff (something I used to attribute to my Raynaud's) and lately I've noticed the fingertip knuckles especially on my middle fingers beginning to become crooked...they're slowly starting to bend outward...if I fall asleep wearing a ring, by morning my fingers are so swollen that I can't remove it without hurting myself...it just seems completely absurd for such things to happen to somebody my age, it's a little alarming =(

Over the past year, I began experiencing flank/kidney pain which my pediatrician attributed to a kidney stone/bladder infection. I didn't have any of the usual urinary tract infection symptoms, I felt more "fluish" than anything. Extremely tired, achey, sweating then cold etc.

She did not do a urinalysis, and I did not find any visible kidney stones in my urine but put me on a round of anti biotics anyways.

The kidney pain returned a few months later and after trying to just suck it up for a few days, I ended up in the ER...I had a cat scan and ultrasound done while there which revealed hydronephrosis or swelling of both kidneys, particularly the right. The ultra sound and catscan showed no visible blockage (IE stone, tumor, cyst).

The Dr in the ER did have my blood and urine tested, but told me little about it, only that there was no significant showing of bacteria in my urine to attribute to a bladder or UT infection. I'm not sure what the labs revealed about my blood, I wish I'd asked...the ER nurses and Dr's seemed to just be looking for signs of a kidney stone or bladder infection and nothing else. When I didn't have those, it was like they just didn't know what to say about the cause of the swelling. :(

The pain seems to come without explaination and I recently had a renal scan with radio active dye done to see if the swelling in my kidney was caused by a problem with "Plumbing"....the scan showed no signs of a collapsed tube requiring a stint, but the hydronephrosis remains. The urologist did say there could be scar tissue inside or outside of the kidney causing it to retain fluid and swell, but I'd like to know what on earth is causing my kidney to have scar tissue if this is so. The one thing that does seem to help is anti inflammatory meds like Motrin in high doses..problem is, that stuff makes me so sick to my stomach in high doses, I usually end up throwing up from it.

Anyhow, I don't know what to think at this point. I feel a bit silly "self diagnosing" but I am sick of not knowing what's wrong...for those of you who have experience with Lupus...what do ya think? Is it possible that I could have it without it being obvious in blood or urine tests? What should I do! Any input/suggestions/enlightenment on the subject would be very very very appreciated...thankyou so much
xo
nicolette

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15 Replies:

  • i would research Lyme disease and other related Tick-Borne Illnesses before anything else. many with Lyme are misdiagnosed with Lupus. www.lymetimes.org & www.ilads.org.audio: www.kqed.org/epArchive/R810171000see an Internist.. stay away from Infectious Disease Drs.what state do you live in?do you have an outdoor lifestyle?have you ever had ANY encounters with ticks?--sonicbmx
    sonicbmx 44 Replies
    • December 25, 2008
    • 04:37 AM
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  • sonicbmx...thanks for the suggestion! I live in central Massachusetts where there are certainly a lot of deer ticks......I don't do much camping or hiking though... I can't remember the last time that I pulled a tick off myself or had a bulls eye rash... although I've pulled a one or two off my dogs over the years....so I'm sure it's possible that I've been exposed at some point... the joint swelling and pain would make sense for Lyme though....my doc has never actually mentioned the possibilities of either Lyme or Lupus with me....she hasn't really acknowledged that the kidney problems and the joint/Raynaud's problems could even be related....I just can't help but wonder if they are..I need to get an adult Dr...at 20 years old, I'm still with a pediatrician which is pretty ridiculous. I've called around hoping that an adult primary care physician would add me on, but so many aren't taking new patients around here, which is bizarre. I will definitely look for a good internist...I would certainly appreciate having my body looked at as a whole thing with inter related parts hahah! Thanks again =).
    come on miracle 2 Replies
    • December 25, 2008
    • 05:44 AM
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  • you live in tickville.. whatever you do, demand Lyme testing from www.igenex.com and don't delay your treatment any longer.your symptoms are indicators alerting you to seek good medical help sooner than later.do everything you can to prevent chronic symptoms and/or late stage disease of any kind. please keep me posted.. i'm very curious.my medical drama began here:http://forums.wrongdiagnosis.com/showthread.php?t=16210http://forums.wrongdiagnosis.com/showthread.php?t=7833http://forums.wrongdiagnosis.com/showthread.php?t=6873happy holidays..--sonicbmx
    sonicbmx 44 Replies
    • December 25, 2008
    • 06:00 AM
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  • I've tried to relate your hydronephrosis to your Raynauds but cannot do it.First,if you have secondary Raynauds,it's likely due to lupus or scleroderma.You need to have an ANA and sed rate done.Next,the hydronephrosis needs to be dealt with before you lose renal function.It's usually caused by blockage to the urinary flow,which is often fairly easy to fix.You should see a nephrologist soon.Good luck.:)
    richard wayne2b 1232 Replies
    • December 25, 2008
    • 00:38 PM
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  • I forgot something:your canker sores.Again,I tried to connect them to one of your other problems but couldn't.However,I can tell you what has been the best treatment I know:Kenalog in Orabase.It's a prescription.:)
    richard wayne2b 1232 Replies
    • December 25, 2008
    • 00:47 PM
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  • Actually,I do have something else to offer regading the canker sores.First,dentures and smoking seem to cause them.Next,deficiencies in folic acid,vitamin B12,and iron seem to be a cause,and that's something you can remedy.
    richard wayne2b 1232 Replies
    • December 25, 2008
    • 01:01 PM
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  • I've tried to relate your hydronephrosis to your Raynauds but cannot do it.First,if you have secondary Raynauds,it's likely due to lupus or scleroderma.You need to have an ANA and sed rate done.Next,the hydronephrosis needs to be dealt with before you lose renal function.It's usually caused by blockage to the urinary flow,which is often fairly easy to fix.You should see a nephrologist soon.Good luck.:)Thankyou for the reply!I'm not sure why I've ended up with the Raynaud's! It is quite a nuisance and a little bit alarming sometimes, the numbness with cold weather is especially bad and with my joints stiffening up, my hands are just not feeling so great = /I had no idea that scleroderma could cause Raynauds, I did wonder if it was maybe Lupus related...really good to know actually...Are most instances of Raynaud's secondary? As far as the kidney goes:I have been in and out of the urologist a few times the past 3 months trying to figure out why I have hydronephrosis since it is quite risky..after cat scans, ultrasound and renal scans, they have finally decided that the problem is not a blockage..it's just frusterating not knowing.I've only seen a urologist up to this point, I do plan to see a nephrologist as the problem seems to me to be more kidney specific...but I just wish I knew why it's happened.. =(. Would it be logical to request an ANA with all of this going on? Also, thanks for the canker sore advice...I have tried salt water gargles but I don't think it helps much....I don't wear dentures or smoke either so it seems like they just happen for no good reason. I've even stopped eating anything too acidic...I've actually never had my b12 levels tested...I always thought I had quite good nutrition though. oooofthanks so very much =). It's good to make a plan to deal with all of this, it's certainly better than sitting around stressed about it! and have a happy new year!
    come on miracle 2 Replies
    • December 27, 2008
    • 04:12 AM
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  • You're more than welcome!Now,Raynaud's is more commonly primary.The secondary form usually occurs after age 35,which is in your favor.As far as the bilateral hydronephrosis,all the references I've read say that it's always an obstruction that causes it.How bad is your renal function?What are your BUN and creatinine?:)
    richard wayne2b 1232 Replies
    • December 27, 2008
    • 01:15 PM
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  • Another idea:what part of your urinary tract is obstructed?Is it just the kidneys or are the ureters involved?That tells me where the blockage should be.:)
    richard wayne2b 1232 Replies
    • December 27, 2008
    • 01:24 PM
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  • Yes,it is O.K.to get an ana now.:)
    richard wayne2b 1232 Replies
    • December 27, 2008
    • 01:26 PM
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  • I finally found a reference to kidney disease andRaynaud's.Plus,has anyone tried to treat you with such meds as nifedipine or Losartan?If not,they're worth a try.:)
    richard wayne2b 1232 Replies
    • December 27, 2008
    • 01:48 PM
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  • Look at ''Raynaud's Phenomenen''at the WIckepedia site.:)
    richard wayne2b 1232 Replies
    • December 27, 2008
    • 01:55 PM
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  • Look at ''Raynaud's Phenomenen''at the WIckepedia site.:)I misspelled ''phenomenon.''
    richard wayne2b 1232 Replies
    • December 27, 2008
    • 01:56 PM
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  • I don't know what's wrong with me today.I also misspelled "Wickipedia!''
    richard wayne2b 1232 Replies
    • December 27, 2008
    • 02:03 PM
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  • I just read your post . . . if you haven't done so, check you Lyme Disease. Lyme Disease The Unknown Epidemic is a great article. I've posted the beginning of it here so you can see where it is considered to be growing faster than HIV and is as infectious and is passed "human to human". You can be born with it!I was originally diagnosed w/Lupus, had all the ANA markers etc but that is not conclusive IMHO. I definitely had to see a doctor or nurse who would run a test not typical of the doctors. You can find this info on Lifelyme.org under testing. I was almost to the point of early onset of Alzheimer's but now I am working full time plus some. Definitely worth your time to be tested accurately.Also, keep in mind that fibromyalgia and CFS are diagnosed by symptom. Lyme can be diagnosed by symptom only also yet doctors are afraid to. Check you Youtube.com and searh for Under Our Skin Excepts 1-5, it's a new movie coming out in March and the excerpts will blow you away.By D. J. Fletcher and Tom Klaber Millions of people who are diagnosed with multiple sclerosis, fibromyalgia, Alzheimer's, chronic fatigue syndrome and other degenerative diseases could have Lyme Disease causing or contributing to their condition. Forget just about everything you think you know about Lyme disease: It is not a rare disease, it is epidemic. It is not just tick-borne; it can also be transmitted by other insects, including fleas, mosquitoes and mites - and by human-to-human contact. Neither is Lyme usually indicated by a bull's-eye rash; this is found in only a minority of cases. And, except when it is diagnosed at a very early stage, Lyme is rarely cured by a simple course of antibiotics. Finally, Lyme is not just a disease that makes you "tired and achy" - it can utterly destroy a person's life and ultimately be fatal. Lyme disease, in fact, might be the most insidious and least understood infectious disease of our day. "If it weren't for AIDS," says Nick Harris, Ph.D., President of Igenex, Inc., a research and testing laboratory in Palo Alto, California, "Lyme would be the number one infectious disease in the United States and Western Europe." Lyme disease was first recognized in the United States in 1975, after a mysterious outbreak of arthritis near Lyme, Connecticut. It wasn't until 1982 that the spirochete that causes Lyme was identified. It was subsequently named Borrelia burgdorferi (Bb), in honor of Willy Burgdorfer, Ph.D., a pioneer researcher. Many now see the disease, also called Lyme borreliosis, as more than a simple infection, but rather as a complex illness that can consist of other co-infections, especially of the parasitic pathogens Babesia and Ehrlichia. Lyme is sometimes called "the Great Imposter" because it can manifest such a broad range of symptoms that it is often misdiagnosed as other diseases. Charles Ray Jones, M.D., of New Haven, Connecticut, says that many people who have Lyme "are thought to have multiple sclerosis, ALS , chronic fatigue syndrome, fibromyalgia, Alzheimer's" and other debilitating conditions. Dr. Harris has worked with physicians who have seen Lyme complications "ranging from neuropsychiatric problems, such as brain fog or even bipolar disorder, to ophthalmological and neurological problems. Headaches and heart problems (Lyme carditis) are common." Joanne Whitaker, M.D., Research Director of the Bowen Research & Training Institute in Palm Harbor, Florida, believes that Lyme is at the base of both chronic fatigue syndrome and fibromyalgia -- the difference between the two being related to the virulence of the organism and the individual immune response. All three illnesses were "discovered" around the same time in the 1980s. Katrina Tang, M.D., H.M.D., Medical Director of the Century Wellness Clinic in Reno, Nevada, says, " eludes many doctors because it can mimic many other diseases. This poses a public health risk, because doctors may treat the wrong disease or not find the true cause, thereby delaying treatment." Delaying treatment can be disastrous. In later stages, writes Joseph J. Burrascano, M.D., of East Hampton, New York, "Lyme also includes collateral conditions that result from being ill with multiple pathogens, each of which can have a profound impact on the person's overall health. Together, damage to virtually all bodily systems can result." Marylynn S. Barkley, Ph.D., M.D., Associate Professor (Neurobiology, Physiology and Behavior) at the University of California, Davis notes that around 15% of Lyme patient develop "serious problems. For those individuals, chronic debilitation and extreme pain can change their lives dramatically. A few individuals have committed suicide due to their inability to tolerate the extreme pain coupled with the frustration of being unable to obtain follow-up antibiotic therapy." Top Home UNACKNOWLEDGED EPIDEMIC Officially, the U.S. Centers for Disease Control and Prevention (CDC) reports that there have been less than 160,000 confirmed cases of Lyme disease since 1980. This contrasts sharply with the estimates of those physicians treating patients with degenerative diseases. Says Dr. Harris, who is a director of the International Lyme and Associated Diseases Society (ILADS), and whose laboratory employs a number of tests for diagnosing Lyme, "Lyme is grossly under-reported. In the U.S., we probably have about 200,000 cases per year." W Lee Cowden, M.D., of Richardson, Texas, a world-renowned consultant and integrative medicine educator; states that "There are very few symptoms where you shouldn't consider Lyme, especially given that a quarter of the U.S. population may be affected. More than 50% of chronically ill people may have Lyme contributing to their condition." Dr. Whitaker, who specializes in advanced testing methods for Lyme, suspects that the great majority of people in the U.S. are infected with Bb because the hundreds of tests she performs every year now invariably come out positive. All the other clinicians with whom the authors spoke agreed that Lyme has reached epidemic proportions. How is this possible? Obviously 25% of Americans haven't been bitten by one of a select few species of ticks. The answer is that Lyme is not transmitted just by ticks. "Of the more than 5,000 children I've treated, 240 have been born with the disease," says Dr. Jones, who specializes in Pediatric and Adolescent Medicine. "Twelve children who've been breast-fed have subsequently developed Lyme. Bb can be transmitted transplacentally, even with in vitro fertilization; I've seen eight children infected in this way. People from Asia who come to me with the classic Lyme rash have been infected by fleas and gnats." Gregory Bach, D.O., presented a study on transmission via semen at the American Psychiatric Association meeting in November 2000. He confirmed Bb DNA in semen using the PCR test (Polymerase Chain Reaction). Dr. Bach calls Bb "a brother" to the syphilis spirochete because of their genetic similarities. For that reason, when he treats a Lyme patient in a relationship, he often treats the spouse; otherwise, he says, they can just pass the Bb back and forth, reinfecting each other. Dr. Tang adds other avenues of infection: "Transmission may also occur via blood transfusion and through the bite of mosquitoes or other insects." Dr. Cowden contends that unpasteurized goat or cow milk can infect a person with Bb. The article Lyme Disease The Uknown Epidemic states "if it weren't for HIV, Lyme Disease would be the
    Anonymous 42789 Replies
    • December 27, 2008
    • 02:46 PM
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