Discussions By Condition: I cannot get a diagnosis.

23...always sick and tired of it :(

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Anonymous
  • October 19, 2006
  • 11:10 AM

I've gone through every test in the world! I'm tired of bein poked with needles! They thought I had lupus, when I was younger (13) I had such bad GI problems my Dr. pulled me out of school to be homeschooled. I had ulcers, gastritis, bile back up, acid reflux , my stomach was inflammed and had IBS. Now, I still have problems with my stomach but I haven't had any tests run, my dr. just gives me something for acid reflux and expects me to move on. I get terrible headaches. I'm ALWAYS tired. I've been going through dizzy spells...so bad at times I have to sit down because things will spin for at least 5 minutes. I've developed bad pain in my hip and my butt (tailbone almost). Lately my ankles been hruting alot but thats due to weak ankles from soccer injuries I think. I also have "female" problems. Polycystic ovaries the dr. said. My cycle is ALWAYS off. I sometimes get little sores on me or just randomly break out in rashes. I also get a "malar" rash on my face. But all my lupus tests were normal. I've got sharp pains in my left side and have had since I was 13 and the Dr. just said it was air getting trapped and growing pain(when i was 13)...but i'm 23 now and don't see how it could still be growing pain. I've also got thyroid problems and my lymph glands are swollen (goiter). I'm normally pretty anemic and recently developed a defienciency in folic acid.

Okay...so I sound crazy right? I've never been healthy since I was born. I have asthma and by the time i was 2 I had tubes in my ears MULTIPLE times. I also had my tonsils taken out when I was 4. I've always been sick and I'm TIRED OF IT!!!! I'm tired of doctors pushing me off on other doctors and my family doctor just shrugs his shoulders and says "i dunno" . He wont even follow up on the things the rheumotoligist wanted him to. I see an endorcrinologist on Nov 7th and dermatologist after that sometime.

Okay.... So any ideas anyone?? I've got a 1 year old lil girl, and I want to feel better for her!!

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16 Replies:

  • hi. please read my post 'fever and stomach pains forever?'. why do the docs just expect us to move on? how can we when we have small children in our care? i'm tired of the tests, no answers, will it get worse? a friend has suggested to see a naturpath, i'm going to one before they try and stick another invasive object in me and see how that goes.. if you want to chat about it feel free to email me. cat. stanton4@optusnet.com.au
    Anonymous 42789 Replies
    • October 19, 2006
    • 11:26 AM
    • 0
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  • I am so sorry to hear about your story. I kinda know what you are going through. I also have a 2 year old. And I have been sick off & on for 3 years now. The doctors don't know what is wrong with me, and I sometimes feel like I am crazy. Honestly, I worry there is something bad wrong and they won't find it till it's too late. I wish you all the best of luck and remember when you feel really bad & would rather cry than breathe, I will be thinking about you!
    leabrooke 4 Replies
    • October 19, 2006
    • 00:21 PM
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  • will think of you to darling.. i think thats the worst part about it, worrying it might be too late. i hear horror stories all the time. i'm scared that one day i'll wake up and wont be able to breathe or walk, it happened to my cousin who had simular health problems. she has gillians barsomethingorother, where she was comletly paralised and needed pysio to get moving again. very scary when its so close to home. the thing is, my aunt her mother has had lupus for 20 years, my mother has disfunctional antibodies and both of their parents had lupus. what are the chances? the worst part about the tests is that they can come back with a negative reading, but you still may have these diseases.. you might just be that one in 200,000, whos to say your not? i girl replied to my post with something about cvs you can check out if you want but i don't think it would help you. i cried when i read it. good luck with all your further testings, i hope you get an answer soon, and remember there are other young mummies in the same situation, it makes me feel not so alone...
    Anonymous 42789 Replies
    • October 19, 2006
    • 08:51 PM
    • 0
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  • Get a test for Celiac disease,,, your symptoms sound like my daughters who tested positive (as an aside,, her diagnosis led me to find I had celiac as well,, at the age of 43,, go figure)
    Anonymous 42789 Replies
    • November 24, 2006
    • 11:28 PM
    • 0
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  • I've gone through every test in the world! I'm tired of bein poked with needles! They thought I had lupus, when I was younger (13) I had such bad GI problems my Dr. pulled me out of school to be homeschooled. I had ulcers, gastritis, bile back up, acid reflux , my stomach was inflammed and had IBS. Now, I still have problems with my stomach but I haven't had any tests run, my dr. just gives me something for acid reflux and expects me to move on. I get terrible headaches. I'm ALWAYS tired. I've been going through dizzy spells...so bad at times I have to sit down because things will spin for at least 5 minutes. I've developed bad pain in my hip and my butt (tailbone almost). Lately my ankles been hruting alot but thats due to weak ankles from soccer injuries I think. I also have "female" problems. Polycystic ovaries the dr. said. My cycle is ALWAYS off. I sometimes get little sores on me or just randomly break out in rashes. I also get a "malar" rash on my face. But all my lupus tests were normal. I've got sharp pains in my left side and have had since I was 13 and the Dr. just said it was air getting trapped and growing pain(when i was 13)...but i'm 23 now and don't see how it could still be growing pain. I've also got thyroid problems and my lymph glands are swollen (goiter). I'm normally pretty anemic and recently developed a defienciency in folic acid. Okay...so I sound crazy right? I've never been healthy since I was born. I have asthma and by the time i was 2 I had tubes in my ears MULTIPLE times. I also had my tonsils taken out when I was 4. I've always been sick and I'm TIRED OF IT!!!! I'm tired of doctors pushing me off on other doctors and my family doctor just shrugs his shoulders and says "i dunno" . He wont even follow up on the things the rheumotoligist wanted him to. I see an endorcrinologist on Nov 7th and dermatologist after that sometime. Okay.... So any ideas anyone?? I've got a 1 year old lil girl, and I want to feel better for her!!I think you should see a homepathic doctor and possibly change what you are eating maybe get into organic foods try to clean your whole system out detoxing for a while im sure you will feel better and much stronger then go from there good luck sweetie
    Anonymous 42789 Replies Flag this Response
  • UGh Sounds like me. I am 23 , 24 in Jan and ALWAYS sick. I have to take off at least 2-3 times a month from work and + many Dr. appts. This sucks. tianac23@sbcglobal.net
    Anonymous 42789 Replies
    • November 28, 2007
    • 07:22 PM
    • 0
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  • I was just thinking about this when I came across your post. I'm 27, and I've always been sick. When I became a vegan and gave up wheat & gluten, pretty much all of my GI problems stopped, but I'm still a mess, getting ear infections and respiratory infections constantly, and getting fatigued. I always have a cough and a painful, wheezy chest. I've been trying homeopathic remedies since I was 16, and still nothing. I'm really beginning to wonder if I'll ever be healthy - or if I'm just crazy.
    Anonymous 42789 Replies
    • January 10, 2008
    • 03:35 AM
    • 0
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  • Get checked for celiac disease. If you test negative, consider also getting thyroid antibodies checked for hashimoto's encephalopathy, although your GI symptoms sound so severe Celiac may be much more likely.
    Anonymous 42789 Replies
    • January 11, 2008
    • 08:34 AM
    • 0
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  • Re: the polycystic ovaries. Beside ultrasound here are the tools for diagnosis. Did your doc do any of these things ? Look at the four questions site. Standard diagnostic assessments:History-taking, specifically for menstrual pattern, obesity, hirsutism, and the absence of breast discharge. A clinical prediction rule found that these four questions (http://www.cfp.ca/cgi/content/full/53/6/1041/T50531041) can diagnose PCOS with a sensitivity of 77.1% (95% CI 62.7%–88.0%) and a specificity of 93.8% (95% CI 82.8%–98.7%).Gynecologic ultrasonography, specifically looking for ovarian cysts. These are believed to be the result of failed ovulation, reflecting the infrequent or absent menstruation that is typical of the condition. In normal menstruation, eggs are released from follicles - essentially cysts that burst to release the egg. One dominant follicle emerges with each menstrual cycle, and after ovulation the follicle remnant shrinks and disappears. In PCOS, failure of ovulation means that the follicles remain in the ovaries for many months. There may be 10 or more in each ovary, and on ultrasound examination they may give the appearance of a 'string of pearls'. The numerous follicles mean that the ovaries are generally 1.5 to 3 times larger than normal.Laparoscopic examination may reveal a thickened, smooth, pearl-white outer surface of the ovary. (This would usually be an incidental finding if laparoscopy were performed for some other reason, as it would not be routine to examine the ovaries in this way to confirm a diagnosis of PCOS).Elevated serum (blood) levels of androgens (male hormones), including dehydroepiandrosterone sulfate (DHEAS) and testosterone: free testosterone is more sensitive than total; free androgen index is often used as a substitute.Some other blood tests are suggestive but not diagnostic. The ratio of LH (Luteinizing hormone) to FSH (Follicle stimulating hormone) is greater than 1:1, as tested on Day 3 of the menstrual cycle. The pattern is not very specific and was present in less than 50% in one study. There are often low levels of sex hormone binding globulin.Common assessments for associated conditions or risksFasting biochemical screen and lipid profile2-hour oral glucose tolerance test (GTT) in patients with risk factors (obesity, family history, history of gestational diabetes) and may indicate impaired glucose tolerance (insulin resistance) in 15-30% of women with PCOS. Frank diabetes can be seen in 65–68% of women with this condition. Insulin resistance can be observed in both normal weight and overweight patients.
    rad-skw 1605 Replies
    • January 11, 2008
    • 11:34 AM
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  • This web site is a link to a similar list of symptoms, and a person responded that it is associated with a "rare muscle disease." However, the name of the disease isn't mentioned. She did provide an email address, though: http://forums.obgyn.net/pcos/PCOS.0009/0352.html
    aquila 1263 Replies
    • January 11, 2008
    • 05:04 PM
    • 0
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  • This will sound rude and impolite, but if you've been complaining about your health since you were 13 and you are 23 now, moreover you gave birth to a baby, and YOU ARE NOT DEAD - THERE IS NOTHING WRONG WITH YOUR HEALTH!!!Get a psychiatrist or psychologist consult.
    Anonymous 42789 Replies Flag this Response
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  • I think the last post was a little harsh, BUT as a student of psychology, I do believe there can be psychological basis to some health problems. I'm not saying your are crazy or need a shrink or anything, but possibly is you tried to improve your mental well-being you would find that helps improve your health, or makes your inflictions come milder or few and farther between.I don't think you need to SEE a psychologist, rather try to change your outlook. I suffer from a lot of health problems myself, but I find if I force myself not to dwell on them, and to not always look for the next symptom, sometimes things pass quicker.Surround yourself with stimulation. If you always have something on the go then you always have something to focus on. I don't mean wear yourself out by committing to a bunch of things, just have a book, video game, project, craft, or something else on the go that you can focus on instead of your sypmtoms. If you feel up to it, a beginners Yoga class can be a great idea too. A lot of places are offering a Mom and tots type yoga class where you can bring your little one to the work out too.Speaking from personal experience, too often when I'm feeling sick I'll call in to work, plop myself in bed, and feel sorry for my condition. I'll end up staying there with little improvement. Once I HAVE to go back to work, or a friend DRAGS me out the door my condition seems to improve quicker, or the symptoms become more bearable.
    Anonymous 42789 Replies
    • November 19, 2008
    • 07:06 PM
    • 0
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  • This will sound rude and impolite, but if you've been complaining about your health since you were 13 and you are 23 now, moreover you gave birth to a baby, and YOU ARE NOT DEAD - THERE IS NOTHING WRONG WITH YOUR HEALTH!!!Get a psychiatrist or psychologist consult.------------------------You can diagnose that nothing is wrong w/ her health on line? Not that her symptoms fit Lyme disease, but as one example, there are many people with cases of THAT for 8 or 10 years w/ misdiagnosis, being shrugged off, being told they need to see a psychiatrist or psychologist, etc. etc.Check out the NY Times best selling author's section on her long struggle with unidentified Lyme disease http://www.amytan.net/ATBiography.aspxOrDr. Singleton, M.D. MPH, who graduated w/ highest honors, was in the Air Force, physician to a Vice President, attended Johns Hopkins, etc. etc. ... his was undiagnosed for 8 years. http://lymedoctor.com/aboutDR.html or the many authors of books, 8 listed on Amazon.com published just in 2008, from people who knew something was wrong for years before diagnosis. Aside from this, we're exposed to so many things that can cause health problems. I've been totally amazed to see the symptoms I get from taking medicines with the INACTIVE ingredient povidone (which has many synonyms, iodine, Betadine, and is also in glue, hairspray, wine, etc.) ... signficantly increased back pain, tiredness, unfocused, unproductive and emotional..... I've discovered by slipping up and having it without my knowledge in a medication after I was told I should avoid it. I used to feel great when 'juice fasting', didn't want to go back to eating, as I couldn't figure out what led to problems. I had the Elisaact.com delayed lymphocyte allergy test done, which identified this, some foods, sodium benzoate, cottonseed oil and corn syrup (these are in 'everything'!). I avoided these, but could tell after the fact when I'd had them, by various reactions. I know people who have heartburn when they have 'packaged foods'... probably a reaction to some of the preservatives or ingredients. Who knows how many people have symptoms from exposure to something like this. I've also seen children have health and behavioral problems related to food, or cleaning products and scented products, and resolved with their removal ... the companies don't have to list the CHEMICALS we're breathing, and absorbing through our skin, on their packages. Check out ewg.org, including their Skin Deep section. Google "MSDS" and common chemicals, like sodium benzoate ..... " CAUTION! MAY BE HARMFUL IF SWALLOWED OR INHALED. MAY CAUSE IRRITATION TO SKIN, EYES, AND RESPIRATORY TRACT. MAY FORM COMBUSTIBLE DUST CONCENTRATIONS IN AIR. " I assume that's for workers directly handling the stuff, but it's okay to put a 'little' in our food? Just because something hasn't been identified, or yet proven to be a problem doesn't mean it's not so. Look at things proven in medicine that weren't known 100 years ago. Before there were ways to measure brainwaves, they were there.
    Anonymous 42789 Replies
    • November 20, 2008
    • 01:16 AM
    • 0
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  • Your symptoms sound identical to my own and I too can not get a diagnosis.I had bad depression for years, which is why (I think) so many doctors are quick to dismiss my symptoms as being in my head. I am off all of my medications and I've got goals and hopes for my life now. I feel pretty good mentally. I am not depressed now and I wish that they would look elsewhere for answers.I am 21, about to turn 22. I have horrible stomach cramps and bouts of constipation and bouts of diarreah. For a long time the pain didn't seem to be connected to any particular foods. Then it seemed to be connected to things with lots of fat or oils. Now it seems to be connected to beef and pork. It isn't connected to breads, so doctors have said it's probably not celiac's. I get a splotchy red rash over my neck and face. It happens when I'm nervous or when I have to speak to new people. It happens when I'm aroused. It happens for no reason at all too. I've had ovarian cysts. One weighed 5 pounds and had to be removed. The other is still small enough that they haven't done surgery on it yet. I have a spotty discoloration on my shoulders and back. I'm rarely not sick... a cough turns into sinus problems turns into a urinary tract infection turns into an ear infection turns into a tooth ache, and on and on. My joints often hurt. My periods are especially painful. I am feeling dizzy, having my vision go black, and falling down more and more... sometimes up to 10 times a day now. When I wake up in the morning I feel like my heart is beating a million miles a minute.I've lost a lot of weight (on purpose) and started eating well and exercising, and it's not helping much. By avoiding beef and pork I have had less stomach issues, but nothing else is improved.I've had so many tests. The doctors are starting to treat me like I'm faking. I'm starting to doubt myself.If you ever get a diagnosis, please e-mail me and let me know what it is at GrotesqueBurgess@aol.com
    Anonymous 42789 Replies Flag this Response
  • I strongly suggest that you go see a naturopathic doctor.Mine has taught me so much about my body and why things happen. I have been dealing with celiac and fibromyalgia symptoms and would not have figured it out so soon if it weren't for the naturopathic doctor.
    Anonymous 42789 Replies Flag this Response
  • hi sounds alot like my trouble I have an underactive thyroid so worth getting your thyroid checked out i have hypothyroidism. I experience pain in my tailbone and sacroiliac joints and my hips are terrible ask for an x ray. my hypothyroidism led to diffuse formed sclerosis of my left sacroiliac joint which is a form of arthritis which could be linked also
    Anonymous 42789 Replies
    • February 10, 2011
    • 11:10 AM
    • 0
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