Discussions By Condition: I cannot get a diagnosis.

How do I convince them to take me seriously?

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: Anonymous
  • May 6, 2007
  • 08:58 AM

I am a 23 year old caucasian female, with no family history of serious medical problems other than heart disease, who has been in and out of dermatologists for 5 years for a characteristic "malar" rash (red, over nose and cheeks, varies from just red to being swollen and bleeding with skin flaking off). I get brushed away as having acne, or not caring for my skin, or having acne rosacea. My skin is now so sensitive to cleansers (after 5 years of being prescribed things in acidity ranging from Cetaphil--which didn't even clean--to Clenia--which burned entire chunks of skin off) I can barely stand to touch it. It's worse when I go outside, and it has spread to no other area of my body. Recently, I moved to Florida; since then, it has been constantly bad.

In a potentially unrelated area, I went to a clinic earlier this year for acute joint pain--the pain was so unbearable when my weight was not on my knees, I don't know if it was worse under pressure or not. They prescribed steroids for a 7 week course to remove the swelling/pain, which helped not only the knee problem, but the rash. Subsequent fluid taps/blood work for the knee problem showed nothing, but it "miraculously" disappeared. I have now been labelled as everything from a hypochondriac to an attention-seeking psych case, and still have no solution to the rash (other than the helpful people at wal-mart checkout recommending their favourite acne medication) or the occasional very painful flare-ups in my knuckles and knees.

What are the magic words, who's the magic doctor, what's the magic lawsuit to be filed before I get an answer? "It just got better" isn't medically relevant, or helpful in the long term. I know a rash itself isn't life threatening, but isn't a persistent problem with the skin indicative of SOMETHING?

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21 Replies:

  • Have you been tested for Lupus? It causes a characteristic rash on the face along with joint pain, swelling, and fluid buildup.Good luck!
    Anonymous 42789 Replies Flag this Response
  • The magic doctor is a rheumatologist. The magic words are, "test me for Lupus."I am stunned that your dermatologists have missed this. The place to find a doctor who specializes is here:http://www.lupus.org/webmodules/webarticlesnet/templates/new_resourcesfind.aspx?articleid=414&zoneid=35And please write back, and give an update as to what happens next with this.Best,Shula
    Anonymous 42789 Replies Flag this Response
  • Please keep in mind that a butterfly rash is symptomatic of ME as well...Me is often confused with Lupus...along with Fibromyalgia, Lyme, MS, Raynaud's and so on...spoke with a fellow nurse yesterday, who informed me she was recently diagnosed with fibro...after past diagnosis of Lupus and Raynauds... I gave her info on ME...she is taking it to her doctor...Her mother was recently diagnosed with Lupus...daughter diagnosed before mother???? and her children are also experiencing ME symptoms...Please look at www.ahummingbirdsguide.com also, find the thread titled Contagious Joint Pain...even if you don't have joint pain...God Bless and Good Luck...I hope someone takes you seriously...I just found the first doctor to do so for me:D mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thank you to those who have taken time to respond to this post.As far as ME, mommy_cat, I meet none of the Canadian criteria for a diagnosis.As far as lupus, I went to a rheumatologist in college who did bloodwork and determined that I did not have lupus. I have always found that given bloodwork "suspicious." I'm putting the numbers that were tagged as high/low below in case anybody here might be able to point out where I can go to another rheumatologist and point out possible problems.At the time this bloodwork was done, my only symptom was the rash and occasional joint pain, but my best friend had recently been diagnosed with lupus and I was scared of the possibility. No fever, on no medications, all bloodwork was done after a 24 hour fast. Scales included in case some of these aren't standardized.Mono-High/Positive (note: I never had any spleen problems or fever or fatigue.)ANA-Negative (with a note saying borderline)CA 8.7 (normal 8.8-10.5)AST 78 (normal 15-37)ALT 75 (normal 30-65)Alk Phos 165 (normal 50-136)RBC count 4.60 (normal 4.7-6.1)MCH 32 (normal 27-31)RDW 11.0 (normal 11.5-14.5)Neut/100 WBC 35.5 (normal 45-75.8)EOS/100 WBC 9.0 (normal 0-7.7)lymph% 17 (normal 19-48)Lymphs atypical 29 (normal 0-5)EOS% 8 (normal 0-7.7)At this point of time, I run into an insurance problem unless I have some absolute evidence previous diagnoses were wrong; quite simply, insurance isn't going to pay for another specialist to say that there is nothing wrong with me. I need SOMETHING to bring to the table so it's not another 5-visit waste of my time and my insurance company's good faith.
    Anonymous 42789 Replies Flag this Response
  • atypical lymphs...29 range 0-5 that is just one of the criteria and I only know because mine was elevated too low RBClow neutrophilshigh eosinophilslow lymph%high EOS are you sure???
    mommy cat 1654 Replies Flag this Response
  • From your own favourite website, mommy_cat:(I deleted some of the descriptions by numbered items and put my own symptoms/relations to them in parentheses afterwards)."The 2003 Canadian Expert Consensus Panel clinical case definition more accurately represents the true symptomatology and manifestations of the disease than all other current case definitions.""The Canadian Clinical Case Definition is summarized as follows:1. POST-EXERTIONAL MALAISE AND FATIGUE: (None: I don't run marathons, but I exercise a healthy amount, occasionally "push myself" and I am never fatigued/depressed (over anything except the occasional extra scoop of chocolate ice cream when on my period.))2. SLEEP DISORDER: (I sleep perfectly well, 7-9 hours a night depending on how much I exerted myself through the day, no naps, no nightmares, no sweating, no snoring, no achiness when I wake up.)3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. (My joints swell and are red when they are in pain)4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety. (My memory is fine, I'm not confused, I speak perfectly well, no dyslexia, never disoriented, and not hypersensitive/overemotional.)5. AT LEAST ONE SYMPTOM OUT OF TWO OF THE FOLLOWING CATEGORIES: 1. AUTONOMIC MANIFESTATIONS: (This one I'm not speaking to, since everything I understood can be a symptom of the flu and half of it I couldn't understand) 2. NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability. (My body heat is same as always, I eat the same as always, my weight hasn't fluctuated since I was 12, and I am rarely stressed.) 3. IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals. (No known allergies, no sensitivity to medications unless you count the chemicals the dermatologists burned my skin with for the past 5 years, haven't had a flu/cold since college.)6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress. (The rash doesn't change based on exertion or stress, hormonal or otherwise.)"So, while ME was the answer for you, I'm still searching for my answer.
    Anonymous 42789 Replies Flag this Response
  • Please read malar rashface swollen, bleeding, flakingskin sensitivityacute joint pain/swellingflare ups of rash, knees and knucklesattention seeking psych casehypochondriac If you read posts where I've posted the dreaded hummingbird info...you will find many others with exactly your own symptoms they too continue to go undiagnosed noone can figure it out symptoms don't follow a patternno rhyme or reason they come and go I'm not a ***k...just trying to help...I give people ME info when I see ME symptoms on their post Bear in mind you could have only 2 symptoms or 72 symoptoms and still have this...I suffer from some neurological, gastro-intestinal, hormaonal, cardiac, endocrine and musculo-skeleta seems I have a pretty sever case...not the case with most people they have mild or moderate cases...hence the fact there are only a few symptoms...Best of Luck...I won't write to you again...I don't want to be reported again for "SPAMMING" just trying to save you a lot of time, pain and heartache...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Solar urticaria......Its rare, but possible. It doesnt explain the joint pain, but would explain the rash, sensitivity, and thats its worse when you go outside etc. Solar urticaria is an auto immune disorder...basically a reaction to natural and some artificial lights.Steriods are the only thing (other than staying out of the light) that seems to help. I was diagnosed with Cold urticaria a few years back...yup, I was allergic to the cold...I grew out of it a few years after i got it but I think the time lines can be months, to your whole life. I'd at least discuss this possibilty with your Dr, and its always best to get a second oppinion to be sure. Good luck!
    Anonymous 42789 Replies Flag this Response
  • Dear seriously...also look into Chronic Fatigue Syndrome...just finding out in USA there was no diagnostic code for Myalgic Encephalomyelitis(the hummingbird info) The CDC just returned it to the codes list in 2006 they state the two are not the same disease Could it be we all have chronic fatigue or ME and have gone undiagnosed for a long time? It is viral, spread like a cold...among other ways....and very contagious many with same sx on this site alone Please look into Chronic Fatigue if the hummingbird thing annoys you...they are very similar Mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Diagnostic Criteria for CF are: (according to CDC evaluations -- http://www.cdc.gov/cfs/cfsdiagnosis.htm#evaluation) 1. Unexplained, persistent fatigue that's not due to ongoing exertion, isn't substantially relieved by rest, is of new onset (not lifelong) and results in a significant rEducation in previous levels of activity. --Again, I have absolutely no fatigue related syndromes-- 2. Four or more of the following symptoms are present for six months or more: * Impaired memory or concentration --Again, no memory problems-- * Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) --Again, no exhaustion-- * Unrefreshing sleep--Again, sleep fine-- * Muscle pain--Again, no muscle pain-- * Multijoint pain without swelling or redness--Again, mine swell-- * Headaches of a new type or severity--No headaches-- * Sore throat that's frequent or recurring--No sore throat-- * Tender cervical or axillary lymph nodes--no lymph node problems, no cervical problems--I have absolutely none of the chronic fatigue symptoms for a diagnosis.RE: Solar urticariaThat's actually one I'd never heard of before, thank you for hours of informative reading. I can't really find a diagnostic criterion list for it, but I will definitely bring it up next time I go to a dermatologist. Do you know of any websites with pictures of typical/atypical rash reactions?
    Anonymous 42789 Replies Flag this Response
  • some start off with one or two symptoms...like myself and then develop more...like myself If you read thread titled "It's a mystery until we solve it" you will find many others with same complaints you do not need every symptom to have this disease...however, yours are there If you want them to take you seriously, take me seriously...I'm trying to help...really...but I can't if you don't believe me gotta run...lots of new posts with same symptoms to address Best of luck and I won't write again...mommy cat
    mommy cat 1654 Replies Flag this Response
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  • PS...many with swollen joints there too unable to explain at this time...still working on it
    mommy cat 1654 Replies Flag this Response
  • mommy cat, This person has read your responses, and looked at your website, and responded to everything you proposed, right from the beginning. For you to continue to badger her is to show that you are, amongst your other troubles, suffering from narcissistic personality disorder. Your self-written comments (not the ones that you are copying and pasting) are repetitive, mixed up, unclear, and pushy. This is called mania.You keep saying you are getting checked for ME but you haven't said if you have it. You have decided that your cause is more important than everyone elses needs, even to the point of believing that everyone without a diagnosis has ME. Considering that you claim a medical background, this shows a lack of connection with reality. I now dub thee, "crazy cat" instead of mommy cat. Get some psychiatric attention while you are working on getting a diagnosis. Anna
    Anna cat 13 Replies Flag this Response
  • Anna...Thank you for your advice...I will no longer post thereI wish you all well...who don't believe...mommy cat
    Anonymous 42789 Replies Flag this Response
  • Anna...again, why are you here?
    mommy cat 1654 Replies Flag this Response
  • Have you been tested for Lupus? It causes a characteristic rash on the face along with joint pain, swelling, and fluid buildup.Good luck!Have you been checked for dermatitis hepatoformis (sp?) it is a type of celiac disease or the skin version of celiac. try cutting out gluten out of your diet, if your skin improves you have your answer; or ask the doc to test you for celiac disease.Good luck!
    Anonymous 42789 Replies Flag this Response
  • Re: solar urticaria...(I'm the one who wrote about SU)I know how frustrating not finding an answer can be, so I tried to find some images for you. The thing is that every rash will look somewhat different. Does the rash ever go away? Does it change at all?I stumbled across Polymorphous light eruption (PMLE) and thought you may want to look into that a little more. Even if its not exactly that, there are similar diseases. I took this quote from a site: http://www.emedicine.com/derm/topic342.htm"Polymorphous light eruption (PMLE) is an acquired disease and is the most common of the idiopathic photodermatoses. PMLE is characterized by recurrent, abnormal, delayed reactions to sunlight, ranging from erythematous papules, papulovesicles, and plaques to erythema multiforme–like lesions on sunlight-exposed surfaces."I'd look into it at least. I'd also think about writing down everything you eat and then cutting things out of your diet for a couple weeks to see if there are any changes. I know its a huge pain, but by doing that, you'll be able to slowly figure out if you're allergic to any foods. Have you ever recieved an allergy test before? It may be a chronic allergic reactionKeep us informed, Nadine
    Anonymous 42789 Replies Flag this Response
  • OP -Just a thought, but is there any chance that it's psoraisis? Psoriasis on the skin manifests with several different types of lesions, with the most common "characterized by raised, inflamed, red lesions covered by a silvery white scale." In addition, about 10% of psoriasis suffers also eventually develop psoriatic arthritis, which could cause a bought of joint pain like you described. Hope this helps - best of luck! - D
    Anonymous 42789 Replies Flag this Response
  • Well, thank you all for being more helpful than the dermatologist, rheumatologist, and allergist :) They have run all kinds of "inconclusive" tests and refuse to give me a concept of "what they think" it might be, just saying it's inconclusive.Bloodwork they said was inconclusive and "borderline" on auto-immune.Biopsy showed non-fungal, non-bacterial.Allergy test showed no allergies.The prednisone treatment with 40 mg 2 days, 20 mg 5 days, 10 mg 5 days, 5 mg 5 days was very effective at removing the swelling/inflammation (and I recognized the absence of joint pain that I'd been dismissing as "normal" for the local humidity.) However, the doctor is reluctant to keep me on heavy steroids (and I am reluctant to stay on them, considering I can only get 4 hours of sleep a night on them and eat 5,000 calorie meals unless I watch myself--I weigh 95 pounds, that's not normal for me :) ) The flaking/bleeding stopped, and the redness was limited to reactions within 15 minutes of direct sunlight exposure.Switching to a hormonal birth control had no impact, positive or negative that I could tell.Right now, I pretty much feel like the doctor's given me a "well, that happens" and told me to stay out of the sun and to get a prescription for steroids if I have a "special event" for which appearances matter. No underlying physiology explanation, no answer other than "steroids work."
    Anonymous 42789 Replies Flag this Response
  • Do u wear sun block?...Try using a 45 or 60 spf...the strongest you can find and use it (re-applying during the day as well)for a week or two to see if that helps. If its due to the sun, it should help. At least it help help enough to decrease the steroids.-N
    Anonymous 42789 Replies Flag this Response
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