Discussions By Condition: I cannot get a diagnosis.

I have been sick for 3 years HELP Please...

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: EastTexasMom
  • June 12, 2007
  • 07:32 PM

28yr old female, symptoms fatigue, fever, migranes, joint pain, severe GERD, diahrea, stomach spasms, painful intercourse (pain for at least an hour after intercourse), my cycles last for 5-7 days every 14 days

I am currently taking aciphex twice a day, zantac as needed, malox daily, relpax as needed, claritin, provera 30mg daily to help with my female issues, lexapro once a day

After the birth of my daughter who is now 3 1/2 I got very sick. I kept telling the doctor how tired I was. At first I was told that I just had a baby that is why I was tired. Then it moved to I must be depressed. So even though I really didn't think I was depressed I started welbutrin. It wasn't a month until things turned strange.
I started getting lumps in my wrists, and all my hand joints began hurting and stiffining. The whites of my eyes turned blood red. I felt pins and needles in my hands and feet. I went to dr to dr. Not one Doctor knew what was wrong so they would refer me on. I had blood work, catscans, xrays, MRIs, eye tests, nerve tests, etc... nothing showed up
By the time I got to the rhumatologist my hands were locked up I could not use them they were so stiff and swollen. His inital evaluation he gave me a steriod shot, oral steriods and told me he thought it was RA. After the labs he ordered he thought it might be Sarcoidosis becasue of a slightly elevated ACE level. I started plaquinil and continuted the steriods. I did this for 8 months.
I felt better after that, I was still tired, but it was managilbe. So I had no idea what had caused this, all I did know was I prayed it would not continue. I got a call from a nuralogist I had saw that my B12 level was low and to take 1000 mg of B12 a day from now on. So I began taking the b12. about 9 months later my reflux started acting up horribly, I had had diahrea for months but the GI dr hasn't a clue. Finally the diahrea gets better and the GI dr has me taking aciphex twice daily with zantac 300mg as needed.
I have had repeated pnmonias and sinus infections all fall and winter, the pulmanologist does not think this is sarcoidosis. He thinks it is reflux causing the infections.
Just last week my joints started up again. My internalist gave me a shot of steriods which has helped. I had a endoscopy yesterday which revealed 4 ulcers in my esophogus and 1 in my stomach, I am currently doing a 48 hour ph probe test (bravo) all the doctors say is something is wrong, but your blood work is all ok! I am sick and I need help! Does anyone know what might be wrong with me?

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15 Replies:

  • There are lots of people out there like you... you're not alone! Have you looked into Adrenal Fatigue? http://adrenalfatigue.org/index.phpWhile I haven't ever experienced all of your symptoms at once, I have had some very odd, tough to resolve chronic problems. A couple of things that have really helped:pro-biotics every dayhigh quality vitaminsfew milk productsno sugarvery little alcohollittle to no processed foodAt times, I've had to actively de-tox and then I can reintroduce fun things in small amounts. I used to live in a city that had low barometric pressure a lot of the time and when I moved to a city with high barometric pressure (read: lots of sunny days), my chronic migraines disappeared. Right now I'm dealing with hormone changes since going off the pill. I also went to see a pyschologist who told me that I'm a victim of my own stress. What I think about triggers an emotion that in turn triggers a stress reaction and that gets my adrenal gland going and my body thinks it's in panic mode. The anxiety manifests in physical symptoms (not psychosomatic) which is interesting because people view me as a very calm, grounded person from the outside. Meditation helps.
    Anonymous 42789 Replies Flag this Response
  • I'm sorry, I don't know what's wrong with you. If I did, I may know whats wrong with me. I have the same symptoms, for almost 2 years now. I have a duendal ulcer, bad acid reflux, various stomach issues, the joint tightness and pain, tingling..headaches, fatigue, weakness, etc..My symptoms and experience match yours almost exactly. Passed from Dr. to Dr. What I have for diagnosis is Acid reflux, gerd, ulcer, esophogitis, anxiety, stess, EBV, HPV, IBS, constipation, sinus infection, depression. My symptoms come and go. The acid reflx and stomach issues seem the most prominent. The condition came on very suddenly those 2 years ago, and I know something must have triggered it. I'm afraid I will never know, and I will continue like this for life. I was put on many meds like you, and I tried antibiotics too. I take prevecid, and also guzzle malox and pop pepcid and tums daily. I notice that if I stop these meds, I seem to get wrose, all over. I often wondered if I was exposed to H Pylori, and if that's what sent me into this tail spin. It seemed that around the time I began to get sick, may people around me were also getting sick with various illnesses, so I have also toyed with the idea that it's a contagious condition. I am no longer sure about anything really...I've had too many possible diagnosis that are never it, and nothing shows in any test. I did test positive for HPV through a Pap, but that seemed unrealted. My mono spot for EBV was high for a recent but not current infection when I first for sick, but this could be the wrong road, because at some point we all get exposed to this virus and carry it. I've thought sometimes auto immune or rhemotoid related, but I saw a neuro, and my tests there were normal. I haven't been back to the docs for a while..still paying med bills. An endoscopy did show duendal ulcer and esophogitis, there is no doubt I have this condition, but Dr's seemed puzzles about my change in bowel habits and IBS like condition. They think it is completely unrealted to Acid reflux and ulcer...but I see it as happening at the same time and somewhat related...Who knows..maybe we have 3 or 4 conditions at once..I still think it's very odd. I don't know if I will ever find out what really happened, or be the same again. Please let me know if you ever get a diagnosis..NY Girl
    Anonymous 42789 Replies Flag this Response
  • Google "symptoms checkers"enter symptomshit entersee if you land on the Chronic Fatigue Syndrome pagesif not, sorry to have wasted your time.If so, check out herbal supplements, vitamins and minerals to boost the immune systemAlso, look into NAET or Bioset therapyReikiand read the book "A Course in Miracles"These are the things you will need for regaining a healthy balancenot western medicine, medications and chronic testing that gives you no answersWishing you well mom
    Anonymous 42789 Replies Flag this Response
  • I'm sorry, I don't know what's wrong with you. If I did, I may know whats wrong with me. I have the same symptoms, for almost 2 years now. I have a duendal ulcer, bad acid reflux, various stomach issues, the joint tightness and pain, tingling..headaches, fatigue, weakness, etc..My symptoms and experience match yours almost exactly. Passed from Dr. to Dr. What I have for diagnosis is Acid reflux, gerd, ulcer, esophogitis, anxiety, stess, EBV, HPV, IBS, constipation, sinus infection, depression. My symptoms come and go. The acid reflx and stomach issues seem the most prominent. The condition came on very suddenly those 2 years ago, and I know something must have triggered it. I'm afraid I will never know, and I will continue like this for life. I was put on many meds like you, and I tried antibiotics too. I take prevecid, and also guzzle malox and pop pepcid and tums daily. I notice that if I stop these meds, I seem to get wrose, all over. I often wondered if I was exposed to H Pylori, and if that's what sent me into this tail spin. It seemed that around the time I began to get sick, may people around me were also getting sick with various illnesses, so I have also toyed with the idea that it's a contagious condition. I am no longer sure about anything really...I've had too many possible diagnosis that are never it, and nothing shows in any test. I did test positive for HPV through a Pap, but that seemed unrealted. My mono spot for EBV was high for a recent but not current infection when I first for sick, but this could be the wrong road, because at some point we all get exposed to this virus and carry it. I've thought sometimes auto immune or rhemotoid related, but I saw a neuro, and my tests there were normal. I haven't been back to the docs for a while..still paying med bills. An endoscopy did show duendal ulcer and esophogitis, there is no doubt I have this condition, but Dr's seemed puzzles about my change in bowel habits and IBS like condition. They think it is completely unrealted to Acid reflux and ulcer...but I see it as happening at the same time and somewhat related...Who knows..maybe we have 3 or 4 conditions at once..I still think it's very odd. I don't know if I will ever find out what really happened, or be the same again. Please let me know if you ever get a diagnosis.. NY Girl after my first son, I had a leep for a bad pap, things have been fine until now, and last month I had another bad pap. We have very similar symptoms. I take prescritpion zantac, malox, and aciphex 2 times a day. I had blood work for something to do with gastrin. Its like a one in a million thing, but I do have several symptoms, so who knows, only the results will tell. The doctors are wanting me to have a nissen fundlplication, to fix my reflux. My son had this when he was 3, and It is not plesant, so I do now know what to do! I would love to chat with you more since our symptoms are so simmilar.
    EastTexasMom 3 Replies Flag this Response
  • It sounds like you have some sort of autoimmune disease. When you have one, you are at risk for others. I would go see an autoimmune specialist. Your symptoms may be from multiple autoimmune diseases and it might take someone really smart to figure it out. For instance, your low B12 could be from pernicious anemia, This is sometimes linked to autoimmune thyroid disease, as are other autoimmune diseases such as rheumatoid arhtitis, celiac disease, and lupus. It is a good idea to write out each symptom and the date it occurred. Try to keep everything limited to one page. Bring this list to an autoimmune specialist, (along with all of your lab and study results and their dates) and ask his or her opinion.Autoimmune diseases are 2-20 times more common in women. Since the symptoms can be subtle and fleeting, they are often written off as somatization or depression (especially because they are in women). Don't let them blow you off. You deserve an answer.It might be something els besides autoimmune, but this is worht looking into by someone smart who listens!-e
    Anonymous 42789 Replies Flag this Response
  • Hello Texas Mom:I am brand new to this site but thought I would just take a skim thru the comments from people. Yours caught my eye. I was going thru the same symptoms as you have explained. I first noticed this when I was 25 and I am now 39. I was trying to get pregnant and not having any luck 3yrs. Doctors did tests my husband and I were fine, I took my temperature every morning etc. I met a friend of a friend and she was just beside herself with joy and relief. She had been feeling achy, irritable, monthly cycles all off, feeling like she had allergies tests showed nothing, headaches, taste in mouth, not a great sense of smell, on and on. She was directed to the internet to read up on CANDIDA ALBICANS. After doing so she started a Candida diet which took only 1mth (which is not long) to notice her symptoms improving. I mentioned my distress of not conceiving after 3yrs and I decided to read up and try this. I'm telling you the difference in me was night and day. My husband noticed too. I was losing weight (gradually but noticeable) less fatigue and less aches and pains, my hair was better, monthly cycle straightened itself out, etc.etc. I conceived my eldest daughter who is now 10 1/2 and went on to have 2 more girls each year after. I will not go into the diet now but please do yourself a favour and read up on this disease and start to feel better. It takes discipline and work but it does WORK. I must say 1mth is not a long time to be on this diet. I stayed on 6mths then you can re-introduce foods etc. within reason. There are books which are very helpful you can get from the library. Enough said.
    cheeks 2 Replies Flag this Response
  • where can I find an autoimmune specialist? I am a few hours from Dallas, TX and I know there are better doctors and hospitals there. I was sent to a nurologist at UT Southwestern Medical school and that was a waste of time, all he said is yes you have a B12 diffecncy and to keep taking B12, no kidding!! Thank you for your advice, it is greatly appreicated
    EastTexasMom 3 Replies Flag this Response
  • I definitely think you need to find a good rheumatologist. my daughter got RA and while they were diagnosing it, i learned a lot, including that those symptoms soundlike they belong to one or a few autoimmune problems.anyway my daughter is so much better now, so you will be too. good luck
    Anonymous 42789 Replies Flag this Response
  • Have you had your thyroid levels checked by a COMPETENT endocrinologist? (Many endocrinologists accept as normal a TSH level that is far too high for feeling well.) Also have them check for the antibodies that signal Hashimoto's Thyroiditis. It is frequently triggered by pregnancy, and the symptoms overlap with some of yours. I was found to have it, and after taking both T4 AND T3 (Cytomel), my life and health are returning to normal. I highly recommend Mary Shomon's book Living Well with Autoimmune Disease (and also Living Well with Thyroid Disease should that prove to be a diagnosis). I hope you feel better soon--best of luck to you!
    Anonymous 42789 Replies Flag this Response
  • I'm the NY girl who had similar symptoms as you. I know that my Dr's have mentioned surgery for the reflux..but they are trying me on meds first. The meds make me feel a bit funny. I guess few people get side effects, but I feel pretty sedated when I take them...Please let me know what kind of test results you get. A friend of mine gave me a book on candidiasis, or candida albican overload - called 'The Yeast Connection'. Pretty interesting stuff..I want to try the diet..I just find it very hard to get motivated, and having a Dr's supervision would probablly be of some help, but I have yet to find a dr who believes in it...I think I'm convinced there is some underlying medical condition that has a specific treatment and I'm waiting for it to show itself. This came on so fast, I feel like it must have a name. I didn't get here slowly..Please keep me posted on test results.
    Anonymous 42789 Replies Flag this Response
  • All of the above posters are correct in what info they have provided. While many diagnosis have been given...candida...Hishimoto's Thyroiditis, ect. They are infact not just diagnosis, but symptoms of a bigger picture. Find a doctor who "believes" in CFS. Have them accept ot refute the possibility. Save yourself time looking for another answer.Help will include Reiki, meditation, Bioset or NAET therapyAll non-traditional...eatern medicinewestern med is...take a test...take a pilleastern med is what will help you.Best to you
    Anonymous 42789 Replies Flag this Response
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  • I am in the same boat. I got online today because my symtoms are back and I am feeling awful for over a week now. BEYOND tired/drugged feeling, achy muscles and popping joints, headaches, a sore by my eye that won't go away(coming back on and off for almost a year...Doctor gave me an ointment..not skin cancer) shortness of breath(now on asthma meds). Most of this came on severely after the birth of my second child. I have battled with symptoms before having children but they weren't as severe. I have had blood tests, etc. Nothing. I think my next step is an endocrinologist, autoimmune specialist and pulmonologist. My husband thinks I am some kind of crazy hypochondriac! i am not! It comes and goes. I notice that it does seem to follow periods of stress most often.
    Anonymous 42789 Replies
    • August 17, 2007
    • 09:07 PM
    • 0
    Flag this Response
  • :) Hey there: Please don't listen to your husband as far as you being a crazy hyphocondriac, you aren't. It is true that after going thru pregnancy no matter 1 or more your body sure is different then it used to be. Before having my 3 children I had weird symptoms of different things which sent me to the doctor thru the tests all fine, I researched & asked questions at a local health food store. I finally one day came across a lady thru a friend who described the symptoms she once HAD exactly to the t of mine. I read the book Candida Albicans and had my husband read it. He finally clued in and helped me grocery shop and prepare food. I lost 35lbs and cleared my system. Low and Behold after trying to get pregnant for 4yrs we were successful. Now I find I will have flare ups to all degrees of severity after or just before my period or cheating on my diet. Its all around diet and a lot of willpower. I cut out all sugar, vinegar, yeast, processed foods & IT WORKED. Please try and enjoy life with your children.:D
    cheeks 2 Replies
    • August 19, 2007
    • 10:07 PM
    • 0
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  • I have suffered many of the same symptoms, over the past 20 years or so. It turned out that I was afflicted with an autoimmune disorder. Original diagnosis of Lupus erythmatosis, later revised to Crohn's disease (Pan Colitis). If you haven't yet, I would strongly suggest an upper and lower GI series be done. The problem with autoimmune diseases is their ability to produce disparate symptoms. Each case presents differently and the range of symptoms can throw physicians off the track. In my case, I suffered intestinal and duodenal ulcerations, polyarthritis, fibromyalgia and psoriasis, which took 3 and 1/2 years to diagnose. It may be worth looking into.
    Anonymous 42789 Replies Flag this Response
  • Have you had your thyroid checked if not I would strongly suggest doing so. Get your TSH, T3 free, T4 free, and antibodies tested. Also ask to have your calcium tested to check for hypoparathyroidism. I have been suffering for 6 years since after the birth of my first and I am done suffering. I have spent nearly every night on this computer trying to put it together. And it is also hard because I don't' have great insurance.Even if they say your levels are normal don't take that as a final answer you know your body not the doctor. the norms are quite different between the american endocrinologists acadamy and the lab that tests the blood.I have been treated for depression and it wasted a year of my life it did not help the symptoms I have and let things get worse.Treating for depression is a bandaid so please don't take that route!Read through these links and see if anything clicks for youhttp://www.parathyroid.com/parathyroid-symptoms.htmhttp://www.medhelp.org/forums/Thyroid-Disorders/show/73I am currently taking synthroid and was feeling better but still tired so I added Cytomel and have been feeling great. No more IBS symptoms, energy, no more extreme irritability, ect.http://www.forumthyroid.com/cytomel/47-brand-name-thyroid-drugs-cytomel.html
    Anonymous 42789 Replies
    • August 20, 2009
    • 05:29 AM
    • 0
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