Discussions By Condition: I cannot get a diagnosis.

Afraid something awful

Posted In: I cannot get a diagnosis. 37 Replies
  • Posted By: KatieRose
  • July 29, 2007
  • 03:47 AM

I am a female in her early 40's and am overweight. I have had IBS my entire adult life. About 6 months ago I started having pain in my left flank about waist level, radiating medially towards the front of my abdomen and sometimes around to the lower back. It it not muscular, it feels soft tissue. It tends to be localized in 2-3 areas that hurt w/external pressure. All spots are within 5-6 inches of each other in same region. Started occassionally when I stood too long or did too much. Laying down and heat helped. Now hurts constantly despite activity or lack, OTC pain relievers don't help, neither does laying down or heat anymore. Have also developed a rapid, sometimes irregular heartbeat. Quit smoking about 2 weeks ago. Had negative colonoscopy, negative EGD except h-pylori bacteria which was treated for 14 days with Biaxin and Amoxicillin orally, negative ultrasound of abdomen, negative pap test. Blood work shows only elevated liver enzymes and glucose (but wasn't fasting so not sure how accurate on glucose). CAT scan showed nothing in pain area; have a small stone in left kidney but not in ureter and not obstructing, cyst on right ovary, small umbilical hernia (not causing problems) and fatty liver (most likely because I am obese). While on the antibiotics, it might have been my imagination, but I think the pain got better. It didn't resolve, but it seemed less intense and less often. Now three weeks later, it's gotten back to constantly hurting.
Now I'm starting to have problems with pain in my sternum and chest. I have GERD and take Nexium, but this pain isn't the same. It's almost a tearing, stabbing feeling all over, not localized. Hurts on external pressure and sometimes with movement. Makes me feel like I can't quite catch my breath, oxygen hungry but not panting like with asthma. Sometimes I have a feeling almost like I'm catching a chest cold, with some phlegm in my throat, but I don't really feel sick or have a noticeable cough. Twice in the last six months I have had swelling and pain in my left submaxillary gland which goes away (or seems to) with antibiotics. When I swallow liquids, especially cold ones, I have a weird sharp pins and needles sort of pain in my right chest wall extending to my right shoulder which is a newer symptom, only a few weeks now. What the heck is that??? :confused:
My doctors think I'm a crazy hypochondriac because they can't find anything "obviously" wrong with me. I'm starting to wonder too. I'm so afraid I have cancer or something horrible like that and I'm really depressed. Hard not to think about it when it's always hurting and you don't know why. I thought maybe fibromyalgia, but I think that comes in flare ups and is intermittent. Mine just seems to be getting progressively worse with new symptoms and a larger area of pain in my left flank than I started with. If this sounds at all familiar to anyone, please tell me what I should have the doctors test for and look for and what sort of doctor I should go to now. GYN, GI and GP couldn't find anything relating to the pain. I am desperate and on the edge of a nervous breakdown. I can't work and it's hard to take care of my kids. Someone please help if you can.
Thanks so much!

Reply Flag this Discussion

37 Replies:

  • Another newer symptom is mild to moderate nausea. It's most noticeable when I lie to down sleep at night, but it can occur anytime of the day. Just thought I'd add it since I forgot before. I guess right now it's the least of my problems. :(
    KatieRose 29 Replies Flag this Response
  • pancreatitis? Are you in the medical field?
    rad-skw 1605 Replies Flag this Response
  • I thought about pancreatitis, but I haven't had any jaundice or widespread itching, although my liver enzymes are elevated. It's something I will check with my doctors, though, just to be safe. I worked in the medical field when I was younger and took pre-nursing courses in college eons ago, but decided not to go on to nursing school. It's amazing how much of that stuff rubs off just working in a surgeon's office and taking a few courses, though. Surprised I remember as much as I do.
    KatieRose 29 Replies Flag this Response
  • Someone on this board had to have an exploratory lap and they found her appendix in the upper left side! Maybe you have recurring appendicitis. How are your WBC's?Is your amylase elevated? Maybe a pancreatic pseudocyst?
    rad-skw 1605 Replies Flag this Response
  • Believe it or not, not one of the doctors did blood work until I insisted on it last week! I had my GYN office draw CBC and Chem panel. They said all my values were normal except glucose and liver enzymes. They didn't tell me what the values were, however. My GP drew lab on Friday. As soon as he gets the results I'm going to request a copy of the report. I'm very quickly learning that I cannot trust my GYN's office, which upsets me because she delivered my daughters and my youngest son and I've been going to her for over 15 years. It's her staff that I have issues with. CT showed the pancreas and spleen as appearing normal. I am going to a urologist today to rule out the LT kidney stone as a cause of the pain. I'm going to ask for a referal to an internal specialist or someone who specializes in difficult diagnoses. Thanks for your responses. I hope we figure this out before it becomes too late. :(
    KatieRose 29 Replies Flag this Response
  • I have a new symptom now and I'm really worried. Along with the pain I've had in my left side and abdomen I'm now having shortness of breath. I have had symptoms like allergies or asthma for the last 1-2 weeks: Phlegm in my throat and chest, an occasional cough, but not bad, and feeling short of breath periodically. My sternum hurts sometimes, but it feels like it's in the chest wall, muscular or connective tissue. I went to the ER yesterday and they did EKG, blood work including cardiac enzymes and BNP test which came back normal. They also gave me a chest x-ray and it was normal, no sign of effusion, no sign of fluid in the lungs. My heart appears normal with no enlargement so they ruled out congestive heart failure as my BNP value was only 13. I think the chest pain and congestion and shortness of breath/allergy type symptoms are related to the pain in my side. I think whatever it is (and they didn't see anything on CT scan other than a kidney stone which wouldn't account for the soft tissue pain I was having per my doctor) has now spread into my chest. I'm really scared and I don't know where to go now. I don't know what kind of doctor to see. My PCP can't help me anymore; it seems like he's lost too. I think this may be connective tissue related, as I do have IBS. Could this be fibromyalgia? I don't have any of the classic hallmarks of FMS like the 18 tender points, though. Anyone aware of any other type of connective tissue disorders that primarily affect soft tissue instead of muscles or joints? I'm going crazy and I don't want to go back to the ER because they'll just tell me I'm fine and send me home.
    KatieRose 29 Replies
    • August 10, 2007
    • 05:47 PM
    • 0
    Flag this Response
  • Please read my previous posts, and Mommy Cat's post in this message board.Search CFS in this board.Best,Frui.
    Eatafruit78 960 Replies
    • August 10, 2007
    • 05:59 PM
    • 0
    Flag this Response
  • Conditions that can lead to gut dysmotility (your IBS) predispose patients to pancreatitis. This includes the inherited neurovisceral porphyrias and related metabolic disorders. Alcohol, hormones and many drugs including statins are known porphyrinogenic agents. Physicians should be on alert concerning underlying porphyrias in patients presenting with pancreatitis and should investigate and eliminate any drugs that may be activating the disorders.It is worth noting that pancreatic cancer is seldom the cause of pancreatitis. I didn't have jaundice or itching with my one flare-up of pancreatitis, just pain like someone stuck a dagger in my upper right quadrant. Did they do an amylase? Are you taking any statin drugs or hormones?
    rad-skw 1605 Replies
    • August 11, 2007
    • 10:00 AM
    • 0
    Flag this Response
  • Do you have chronic pancreatitis or was it an acute attack? How long have you had pancreatitis if it is chronic? I do not take statins. I take Cardizem, a calcium channel blocker, for my high BP and SVT. I take nexium for GERD as well. My pain is in my upper left quadrant and is intermittant. Position changes help it sometimes, like lying down with a heating pad (not as much as it used to, though). Could that still be pancreatitis? My glucose was 192 on a NON fasting glucose test done with the CBC and chem panel. My liver enzymes were ASF 79 and ALT 107 and a CT has confirmed fatty infiltration of the liver. In researching I believe this to be non alcoholic fatty liver disorder, common in obese people, especially females in their 40's, but I'll still have that checked out. I had a fasting blood glucose drawn yesterday, but won't know the results until Monday or Tuesday. I don't know if anyone drew an amaylase. I've requested the doctor to mail me a copy of the blood test results and should have that Monday or Tuesday as well. I've made an appointment with an internal specialist for next Friday. I told the nurse I was desperate for someone to figure out what's wrong with me. The new symptoms I'm having of respiratory problems with phlegm in my throat and chest and my throat feeling "swollen" and making it difficult to breathe are really scaring me. I don't know if they're related to the other issues or not. When I went to the ER they did a BNP test and found it to be 13, well within the normal range, which they say rules out congestive heart failure, and my chest x-ray was clear, but I could be having lung symptoms none the less. I'm really freaked out now. I wish I could calm down and not panic and dwell on it constantly, but it's hard when you can't get a diagnosis and you are constantly reminded by your symptoms. Did it take you a long time to get a diagnosis? How did you deal with the feelings of impending doom and fear? I'm finding it hard to live my daily life, do housework, take care of my kids, go to the store, etc... I find myself constantly depressed and my family is paying the price. http://forums.wrongdiagnosis.com/images/icons/icon9.gif
    KatieRose 29 Replies
    • August 11, 2007
    • 05:18 PM
    • 0
    Flag this Response
  • Does the pain have any correlation with ovulation? Are you having any irregular bleeding (excessive, clotty, lengthy, painful)? Endometriosis (which cannot be seen on a cat scan or vaginal ultrasound) can affect the lungs in addition to ovaries, uterus, kidneys, etc. It is only diagnosed by exploratory lap, which at this point, could not hurt, and would give you some peace of mind at least, if it comes back clear. Get a new gyn - one tht concentrates on gyn (ideally endo), not ob.
    Anonymous 42789 Replies
    • August 11, 2007
    • 05:18 PM
    • 0
    Flag this Response
  • Another thought - endo is frequently misdiagnosed as IBS
    Anonymous 42789 Replies
    • August 11, 2007
    • 05:21 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Fauve:I know that I have cysts on both ovaries, but we are watching them via repeat ultrasounds to see if they get smaller or not. I have thought about endometriosis, but the pain doesn't seem to correspond to ovulation or my cycle. I just finished my cycle and my side hurts worse yesterday and today than it did when my cycle first started. Does laying down or positional change help the pain of endometriosis? I didn't think it did. Sometimes when my side is really hurting I have diarrhea. Not sure if this is just because it is so close to the bowel or maybe it is in the small bowel itself. Colonoscopy and EGD can't really get that far. I also get strange muscle spasms in the left side of my abdomen periodically. None of the doctors seem too worried about that, though.
    KatieRose 29 Replies
    • August 11, 2007
    • 05:25 PM
    • 0
    Flag this Response
  • RAD-SKW:Do you have chronic pancreatitis or was it an acute attack? How long have you had pancreatitis if it is chronic? I do not take statins. I take Cardizem, a calcium channel blocker, for my high BP and SVT. I take nexium for GERD as well. My pain is in my upper left quadrant and is intermittant. Position changes help it sometimes, like lying down with a heating pad (not as much as it used to, though). Could that still be pancreatitis? My glucose was 192 on a NON fasting glucose test done with the CBC and chem panel. My liver enzymes were ASF 79 and ALT 107 and a CT has confirmed fatty infiltration of the liver. In researching I believe this to be non alcoholic fatty liver disorder, common in obese people, especially females in their 40's, but I'll still have that checked out. I had a fasting blood glucose drawn yesterday, but won't know the results until Monday or Tuesday. I don't know if anyone drew an amaylase. I've requested the doctor to mail me a copy of the blood test results and should have that Monday or Tuesday as well. I've made an appointment with an internal specialist for next Friday. I told the nurse I was desperate for someone to figure out what's wrong with me. The new symptoms I'm having of respiratory problems with phlegm in my throat and chest and my throat feeling "swollen" and making it difficult to breathe are really scaring me. I don't know if they're related to the other issues or not. When I went to the ER they did a BNP test and found it to be 13, well within the normal range, which they say rules out congestive heart failure, and my chest x-ray was clear, but I could be having lung symptoms none the less. I'm really freaked out now. I wish I could calm down and not panic and dwell on it constantly, but it's hard when you can't get a diagnosis and you are constantly reminded by your symptoms. Did it take you a long time to get a diagnosis? How did you deal with the feelings of impending doom and fear? I'm finding it hard to live my daily life, do housework, take care of my kids, go to the store, etc... I find myself constantly depressed and my family is paying the price. http://forums.wrongdiagnosis.com/images/icons/icon9.gif
    KatieRose 29 Replies
    • August 11, 2007
    • 05:28 PM
    • 0
    Flag this Response
  • Fauve:I know that I have cysts on both ovaries, but we are watching them via repeat ultrasounds to see if they get smaller or not. I have thought about endometriosis, but the pain doesn't seem to correspond to ovulation or my cycle. I just finished my cycle and my side hurts worse yesterday and today than it did when my cycle first started. Does laying down or positional change help the pain of endometriosis? I didn't think it did. Sometimes when my side is really hurting I have diarrhea. Not sure if this is just because it is so close to the bowel or maybe it is in the small bowel itself. Colonoscopy and EGD can't really get that far. I also get strange muscle spasms in the left side of my abdomen periodically. None of the doctors seem too worried about that, though. Cysts *on* or *in* ovaries? Cysts on ovaries are either fibroid related or endo. Cysts in ovaries can be normal-follicular or endo. A video pill should be able to get to the hard to reach small bowel - just a matter of finding a GI who will administer one. Endo pain can certainly be relieved by positional change and lying down. Knees bent, laying on side with heating pad is classic endo position. In advanced cases of endo (usually advanced when finally diagnosed), the pain is throughout the cycle. And, the endo is found throughout the abdomen. Has anyone given you a chest xray? Insist on one.
    Anonymous 42789 Replies
    • August 11, 2007
    • 06:44 PM
    • 0
    Flag this Response
  • One more thing - i think the kidney stone is definitely playing a role here - I personally had a small stone in my kidney that did not want to pass that gave me pain for years - eventually passed and pain is gone - would also be responsible for those muscle spasms. And, if it helps any, I really dont think anything here sounds awful...I think you just have a combination of small things that are combining to worry you. I think it is really great that this got you to quit smoking - it really is a blessing when a health scare that turns out to be nothing changes our long term health for the better.
    Anonymous 42789 Replies
    • August 11, 2007
    • 06:55 PM
    • 0
    Flag this Response
  • Fauve:Thank you for the encouraging words. The new respiratory symptoms are definitely scaring me but I just don't know if they're related to everything else. Twice in the last week I've had a little spell of feeling lightheaded and "out of it", but it went away after a few minutes. The ER did a chest x-ray and they said it was normal. CT scan in June said there is a right ovarian cyst, but it didn't say if it was in or on the ovary. A subsequent ultrasound found the cyst on the left ovary in July. I will probably have another ultrasound in a week or two. My urologist said my kidney stone is too large to pass now so I have to have a lithotripsy, but I can't have that until the cardiologist clears me so I'm going to have to wait a few more weeks it seems. I'm glad I quit smoking too although my respiratory symptoms have actually worsened since I did. How weird is that? Are you in the medical profession? Sounds like you have a lot of knowledge. Thanks again for all your responses. :)
    KatieRose 29 Replies
    • August 11, 2007
    • 08:20 PM
    • 0
    Flag this Response
  • Hey Katie - I'm not in the medical profession but come from a long line of female doctors - as far back as my great grandmother! I rebelled as a kid and didnt go that route, but it is definitely in my blood. The kidney stone, being as large as it is, I'd bet is responsible for all of the flank, and much of the abdominal pain (my endo suspicions are lessening learning that the stone is that big). The chest symptoms may very well be a reaction to quitting smoking. The lungs immediately begin healing as soon as smoking is stopped. In fact, in 10 years time, you should be almost as good as new. I would be tempted if I were you to begin a no bread/pasta diet (not atkins - oats, rye, fruit, etc should be okay - just eliminate wheat flour based products) in order to offset any additional weight gain you may have from quitting smoking - this may also help the IBS symptoms - IBS can also be misdiagnosed celiac disease. Lastly, do an inventory of any medications you are currently taking. Try to cut out as many as possible because your liver is definitely rebelling. Some are worse than others on the liver (esp statins and anti-depressants) - research this on rxlist.com. Look into taking Milk Thistle.
    Anonymous 42789 Replies
    • August 11, 2007
    • 08:51 PM
    • 0
    Flag this Response
  • I take only Cardizem for my SVT and high blood pressure and nexium for my GERD now. I was on Xanax and Effexor for about 18 mos, but earlier this year I decided I didn't want to take them anymore and weaned myself off. I try not to take any OTC pain relievers like Tylenol because I know they can be bad for you. Can the liver repair itself or will I always have the damage caused by the medications? I know you can reverse fatty liver by losing weight and eating healthy, avoiding alcohol, etc... but I don't think I can come off my meds anytime soon. I am attempting to lose weight now but I'm having a hard time because I want to lower my sodium intake to 2000 mg/day or less but I also want to follow a low carb diet in case my fasting glucose comes back high. My non fasting was 192 which isn't REALLY bad. I'd had a cup of coffee with flavored/sweetened creamer, which is almost pure sugar, about an hour before the test. I'm just feeling overwhelmed like there's nothing I can eat. Unfortunately I never learned to like vegetables and forcing myself to eat them is really hard; I gag. :eek:I have lost about 12 pounds in the last month, but I'm not eating enough, I think. These new respiratory symptoms may be my lungs repairing, but my husband isn't having this problem. He smoked a LOT longer than I and we quit at the same time. These episodes of syncope/lightheadedness scare me, too, because I'm afraid to drive my kids around. It happened at the grocery store today, but again, it was gone within a few minutes, although I felt kind of tired afterwards. Sometimes I think maybe I am just a giant hypochondriac and everything is in my head. I am a born worrier and prone to anxiety, so that may have everything to do with it. I figure the human brain is capable of lots of things, even producing symptoms when someone is obsessed about something. I almost hope that I am just crazy. About the only time I feel okay now is laying propped up in bed with my hubby. My poor kids don't know what to think and my house is just getting more and more messy. I appreciate talking to you. Your knowledge is helpful and comforting. Thanks so much!
    KatieRose 29 Replies
    • August 11, 2007
    • 11:17 PM
    • 0
    Flag this Response
  • I take only Cardizem for my SVT and high blood pressure and nexium for my GERD now. I was on Xanax and Effexor for about 18 mos, but earlier this year I decided I didn't want to take them anymore and weaned myself off. I try not to take any OTC pain relievers like Tylenol because I know they can be bad for you. Can the liver repair itself or will I always have the damage caused by the medications? I know you can reverse fatty liver by losing weight and eating healthy, avoiding alcohol, etc... but I don't think I can come off my meds anytime soon. I am attempting to lose weight now but I'm having a hard time because I want to lower my sodium intake to 2000 mg/day or less but I also want to follow a low carb diet in case my fasting glucose comes back high. My non fasting was 192 which isn't REALLY bad. I'd had a cup of coffee with flavored/sweetened creamer, which is almost pure sugar, about an hour before the test. I'm just feeling overwhelmed like there's nothing I can eat. Unfortunately I never learned to like vegetables and forcing myself to eat them is really hard; I gag. :eek:I have lost about 12 pounds in the last month, but I'm not eating enough, I think. These new respiratory symptoms may be my lungs repairing, but my husband isn't having this problem. He smoked a LOT longer than I and we quit at the same time. These episodes of syncope/lightheadedness scare me, too, because I'm afraid to drive my kids around. It happened at the grocery store today, but again, it was gone within a few minutes, although I felt kind of tired afterwards. Sometimes I think maybe I am just a giant hypochondriac and everything is in my head. I am a born worrier and prone to anxiety, so that may have everything to do with it. I figure the human brain is capable of lots of things, even producing symptoms when someone is obsessed about something. I almost hope that I am just crazy. About the only time I feel okay now is laying propped up in bed with my hubby. My poor kids don't know what to think and my house is just getting more and more messy. I appreciate talking to you. Your knowledge is helpful and comforting. Thanks so much! Well, I see it this way - if you are a hypochondriac, it's acting as a great impetus to make productive changes, and if you're not, you'll be catching something before it gets worse. So all in all - worry/anxiety/hypochondria good! Ask the doc if elevated liver enzymes are solely fatty liver related, since fatty liver you can reverse. I just read that diabetes and fatty liver can go hand in hand, so it makes me concerned that the 192 sugar reading may have some significance - and if nothing else, shows you are vulnerable to developing it. As for quitting smoking - just googled and found this at the very first website i came to:http://www.notosmoke.com/herbal-smoking-articles/smoking-withdrawal-symptoms.htm >>>Respiratory ProblemsYou will have lot of problems related to respiratory system like dry cough, running nose and severe cold infections. You might even experience difficulty in breathing. However it needs to be understood that these are indicators that your lung is getting cleaned up. It takes quite some time for the infections to be cured and you will soon be able to lead a normal life. Your husband may just be built differently, and I think it's great that you quit together - certainly should ensure success. The reason I suggested the no bread/pasta, rather than the low carb, is that it's easier and will definitely decrease your sugars and let you lose weight without you being hungry or craving anything - the oatmeal/potatoes/rice/fruit etc will take care of that, and if you do end up having diabetes, you're already halfway there. It's a very healthy way to eat and might head off diabetes if you're borderline. The veggies I would just go ahead and eat on schedule - hungry or not - just see it as medicine until you develop a taste for them (must eat something 28 days in a row to develop a taste for it). I would do the same with kefir/yogurt/cottage cheese (organic w/ active cultures for IBS) if you're not getting dairy any other way. Same thing with salt - go without for 28 days, and you'll no longer miss it. Eat as well as you can afford - that means Whole Foods and not the grocery store if you can - organic food tastes better, and veggies and fruit pack more of a nutritional punch. No tempting sodium filled processed food either. Between not smoking, and a healthier diet, you might not be feeling much anxiety anymore (have i mentioned vitamins yet? lol)
    Anonymous 42789 Replies
    • August 12, 2007
    • 00:52 AM
    • 0
    Flag this Response
  • Thanks so much Fauve. I googled quitting smoking too and found the same thing at a few sites. I'm actually surprised, but it makes me a little less worried. You're a Godsend. Bless you!
    KatieRose 29 Replies
    • August 12, 2007
    • 01:22 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.