Discussions By Condition: I cannot get a diagnosis.

do i have lupus?please help

Posted In: I cannot get a diagnosis. 36 Replies
  • Posted By: Anonymous
  • June 20, 2008
  • 07:42 PM

i,m 21 male and have had problems all my life at around 12 it got worse and now it's much worse.i have lots of symptoms more every month or so here lately,my joints and muscles hurt very bad numbness in legs/arms,bad in neck,shortness of breath,fast hard heart beat,kidney/urine problems,rash on cheeks and nose brown to red then flaky,mental probs anxiety depression,dizzyness vision problems,weight loss,swelling/inflamation in neck legs groing area and other places,very fatige and tired wears me out just going to the bathroom,sun makes it worse and makes skin worse,low fever,have protein and something about blood cells without infection in urine,feels like i have the flu all the time,had this for years it has just got almost unbearable and can't do anything not even sleep.sorry for long list but does anyone know what is wrong with me is it lupus.im losing insurance and docs havn't figured it out said needed more time for test but when i was 12 a doc said i had it.did have lupus test today and waiting please help thank you.

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36 Replies:

  • Does sound like an autoimmune disease...lupus is one, but you may also want to be tested for others. Have you been tested for autoimmune thryoid disease, Graves or Hashimotos? Thryoid can be complicated and an endocrinologist can do the exact testing...look up on thryoid problems, however before you see the doc...best to be well informed. Joan
    Joan5555 316 Replies Flag this Response
  • no,i haven't tested except lupus and it will be tue.i have had cystoscope and some x rays,and i also had surgery about two months ago it was supposed to be 2 day recovery and just really made things alot worse(fissure)espcially my kidneys i go about 30 times a day and 5 times a night.i will definetly look at those,my throught has been swollen and sometimes sharp pains for over two years now.thank you for your answer
    Anonymous 42789 Replies Flag this Response
  • Diabetes has been ruled out? You have alot of signs for this. Also have they tested you for Lyme? This can cause all of your symptoms as well. Bowne or Igenex labs are the only reliable labs for testing for Lyme. What are your B12 levels? If low this can be contributing but don't think it is the cause of all of your symptoms. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • diabetes hasn't been,or lyme.don't know b 12 levels.have thought about diabetes.my symptoms keep changing or getting more and am really worried.just had an awlful bm hard to explain legs were numb and chills and pressure almost passed out and my testicals went in me which happens here latley with bm just not with weird pain.it made me so tired and have to urinate alot.this is just another new symtom.also blackspots in stool and white stuff in urine.thanks for your info,really can't find a doc to help.
    Anonymous 42789 Replies Flag this Response
  • diabetes hasn't been,or lyme.don't know b 12 levels.have thought about diabetes.my symptoms keep changing or getting more and am really worried.just had an awlful bm hard to explain legs were numb and chills and pressure almost passed out and my testicals went in me which happens here latley with bm just not with weird pain.it made me so tired and have to urinate alot.this is just another new symtom.also blackspots in stool and white stuff in urine.thanks for your info,really can't find a doc to help. You need a fasting glucose tolerance test and a food occult stool exam at the very least. Where do you live? Also, are you taking any medications?DOM
    acuann 3080 Replies Flag this Response
  • in tenn,i got a glucose test it's 84.also for the past two months i have a cold taste like kind of mouthwash.but not for a couple of days,and have done it before just not as often.read that it means keytones in urine.could diabetes cause all of this(thought it was lupus).i was on antibiotics and flomax for 1 month but quit didn't help.and i took trileptal (anxiety depression)since i was 12 and i am stopping it too,it didn't make any difference taking or not with any of the meds,so i just quit.(slowly)
    Anonymous 42789 Replies Flag this Response
  • thank all of you for your help i will go there and post.im going to check my glucose level again later.thanks
    Anonymous 42789 Replies Flag this Response
  • i just got to feeling bad and a allful headache. so i layed down for 45 mins or so and when i felt good enuogh to get up i check my glucose had a hard time getting blood started but i did and it was 133,is this why i felt this way. maybe it was higher when i was feeling worse.thanks
    Anonymous 42789 Replies Flag this Response
  • chronic fatigue immunity dysfunction syndrome (CFIDS)???????
    taniaaust1 2267 Replies Flag this Response
  • i'm going to the doctor today,a new one.what is cfids,is it one thing or different things?thanks
    Anonymous 42789 Replies Flag this Response
  • i checked my glucose and it's 145,i've had no sweets.does this mean i have diabetes?also doc want to do colonoscopy but isn't too soon after surgery?thanks
    Anonymous 42789 Replies Flag this Response
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  • All of the suggestions are good that I have read. Have you gotten anymore tests results? Have you thought about celiacs disease? It is an autoimmune disorder that effects the small intestine. It can also lead to other autoimmune disorders such as lupus, ms, ra and others. It might be something worth checking out. I had similar symptoms as you...put on meds for blood sugar, high blood pressure, anxiety, etc. There is blood work and a biopsy of the small intestine that can help with diagnosing celiacs but the true test is going on a gluten free diet. Research the disorder and see if it sounds like you.Kathy
    onlyme 2 Replies Flag this Response
  • i'm going to the doctor today,a new one.what is cfids,is it one thing or different things?thanks CFIDS is an illness which seems to have various subgroups to it..but probably the same illness. People with CFIDS often get flu like symptoms eg low fevers, glands going up etc etc (that's quite classical with the illness) and have a large variety of symptoms coming in usually affecting many different body systems. Fast heart rate and the other symptoms you mention are common with it (i dont know about the sugar stuff thou). I suggest check out the CFIDS symptom list at http://wwcoco.com/cfids/bernesx.html CFIDS is also known as chronic fatigue syndrome but it isnt just about feling fatigue.. it's a whole symptom complex which comes in.. triggered more by excertion (mental or physical can trigger...often minor things cause excertion). Unfortuantly most doctors are not comfortable diagnosing patients with this illness due to a lack of knowledge about it out there and misconceptions about it (95% doctors are not up to date with the latest studies etc on it) and it's a hard to understand illness unless you know someone with it.. or have seen many patients with it. One CFIDS study showed that the average time for CFIDS patients to finally get a proper diagnoses was 6-7 yrs. (thou doctors do know a little more about the illness now..but its still taking many YEARS to get a diagnoses). As you are male.. getting a diagnoses may be harder as some doctors believe a myth that this illness isnt in men!! (which isnt at all true). In fact studies show that when a child gets it.. the male and female ratios are about the same... in adults thou it is much more common in females (75% of ones with this illness in adulthood are female). If the next doctor dont know what you have either.. start asking the doctors if they know of any doctors who specialise in CFIDS.. so you can be ruled out for illnesses like this.. and maybe have CFIDS confirmed if that is your issue. For good info on CFIDS or support check out www.immunesupport.com (they also have a great forum there too in which you'll be able to get any of your questions on this illness answered).
    taniaaust1 2267 Replies Flag this Response
  • Please do not rely solely upon anything found on line or by word of mouth, unless from someone in the medical community regarding a diagnosis or your health. Lupus in males is EXTREMELY rare, especially for your age group, but your symptomology is very vague & can be something easily remedied or can put you in for the long haul. I have a very nasty form of lupus & even though I don't have the positive ANA & all the other nominal tests for lupus, this is a real "humdinger" (I can think of a better word to use, but will refrain from using more colorful terminology.) My immune system is so ramped up that I go anaphylactic several times a year, even with meds to shut my system down & steroids (next step is chemo, yay!!!). I was a very hard case to diagnose & it took the help of many doctors (some good, some not fit to flip burgers) to get the help I needed, so if you are not getting answers from your doc or feel they have mislabled you as a kook, MOVE ON. Life is too precious & short to waste. If you have any sort of autoimmune disease, it would be best to get things under control sooner rather than later. Good luck & keep truckin'.P.S. trying to self diagnose is DANGEROUS!
    Anonymous 42789 Replies Flag this Response
  • thanks you all so much for your replies,and i am 21 male.and i can remeber my lower stomach has always hurt since i was like 5.but the rest started at 12.i also have been passing kidney stones,but that's not even close to the rest of the pain.i'm supposed to get the lupus test today,but i will try to get tested for those two things.thanks
    Anonymous 42789 Replies Flag this Response
  • i got test results and they said it was negative.don't know what they were.they are going to send me to a specialist,but now i'm losing insurance monday.i have everything cfids says so maybe that might be it.but i still have a rash on cheeks that doesn't go with it i don't think.thanks
    Anonymous 42789 Replies Flag this Response
  • i went to the doctor today because last night i had a spell where i felt lost and confused and my body felt to heavy to lift and bad vision problems.they did a ct scan on my head and was fine. they checked my urine and now after two months is finally clear of protein blood and infection,which is good but maybe afected lupus test?i can't see a immune doc before my insurance runs out.thanks
    Anonymous 42789 Replies Flag this Response
  • i went to the doctor today because last night i had a spell where i felt lost and confused and my body felt to heavy to lift and bad vision problems.they did a ct scan on my head and was fine. they checked my urine and now after two months is finally clear of protein blood and infection,which is good but maybe afected lupus test?i can't see a immune doc before my insurance runs out.thanks im sorry i have to go to work soon which is why i was not able to ready any of this thread, but id like to reply quickly and ill check back later have ANA's been pos or neg? have they tried treatment regardless of test results? not all lupus patients test pos, and may test negative many times. and when or IF you do have a positive ANA it does not mean you have lupus, a positive ANA can mean a number of things (one of which is lupus) which is why it will be hard to diagnose hope i was any help :D
    Unreal 19 Replies Flag this Response
  • i have everything cfids says so maybe that might be it.but i still have a rash on cheeks that doesn't go with it i don't think.thanks umm dont be so sure. i do know some with CFIDS do have that, ive come across a couple of diagnosed CFIDS people in the past which have like the butterfly lupus like rash on their faces but dont have lupus but CFIDS. CFIDS can imitate a lot of different illnesses cause of the huge variety of symptoms which can happen in it. Rash or flushing of face: 35-45% (statistic from http://wwcoco.com/cfids/bernesx.html Within 5 yrs..there should be genetic testing available for CFIDS. They can tell now which subgroup of CFIDS a person is in via the genes..but the test isnt available to the public.
    taniaaust1 2267 Replies Flag this Response
  • Does the rash on your cheeks come and go or is it always there...does it feel hot or inflammed ever? Do you have a rash on your nose as well? DOM
    acuann 3080 Replies Flag this Response
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