Discussions By Condition: I cannot get a diagnosis.

Multiple Symptoms, Just No Answers...

Posted In: I cannot get a diagnosis. 29 Replies
  • Posted By: Momgrowdup
  • May 8, 2007
  • 11:35 PM

Forgive me for being new-I didn't see my probs on the FAQ pgs...
My doctor isn't the referring type and we have had battles before so I don't wish to upset her. I was not referred when I asked for a colonoscopy guy (since I was under 50 she said-No) Butt, I have had constipation for Many (over 15 years). As a matter of fact when I pulled all the medical records together and saw them as a group-I realized that I had been in the emergency room for back pain several times...(bad discs too at L3,4,5) when I was actually constipated! No longer take analgesics of any kind or iron-too constipating. One of the xrays (1991) showed a whole vit. tablet in my colon. And I didn't drink enough water-now though am better. oKay-so my other symptoms are low body temp-95* until started taking levothyroxin (100mg/mc whatever) now its more like 97.8-98.2 Low thyroid/High DHEA. Osteoporosis: Taking Fosomax. GERD: Rantidine 150mg 2X daily. Vision bilateral is much worse in the last five years from 20/13 to 20/30 (I don't understand how I can lose close vision and far vision BOTH at the same time!) Also, COLD feet, hands, rearend. Great EKG, BP 117/70, Resting pulse 60. Lethargy-that means tires easily right? Some depression. Joint pain-well that's probably due to arthritis (R knee) also two ACL repairs both L&R knees and I'm overweight: 200 pounds/5'8". My hair is falling out too-the doctor prescribed spironolactone which helped then took me off because it may be keeping me from losing weight! I'm pretty tired of hearing this is due to my age, eating too much exercising too little (just turned 50). I can keep up with Billy Blanks TaeBo and treadmill 30 min at 3 mph. Losing eyesight and gaining weight doesn't run in my family-- My mother (Aged 65) is alive and well-5'7" 140 lbs doesn't wear glasses, my half sister (35) is 5'8" 138 lbs (also doesn't wear glasses). My top weight was 256 (at 22) and I took over 90 pounds off which stayed off through my 30's. Dropped more weight with the birth of my children after the cessation of nursing and ended up around 148 until 10 years ago... Had a lifestyle change with less physical work and more regular meals-but we eat healthy stuff. OH! And By the Way, when I started complaining about not being able to take off the pounds the doctor sent me to a Nutritionist and doing exactly everything she said-eating only what was on the list at the times and in amounts on the list: Gained 4 pounds in 3 weeks. I have gotten over the being angry part-made a choice not to have gastric bypass even though ins. approved. Scheduled for Optifast appt-but Really! If I have endocrine probs I'm not getting referred-remember? What should I be doing right now? Do I have too many issues to be taken seriously? :(

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29 Replies:

  • What a difference a week makes. Researching some possible diagnosis here was very helpful in my case. I have been thinking my hormones were messed up! Aggression added into a list of symptoms makes for an *interesting* mix. Doctors are human too, so when a patient is practically hostile that a condition is getting worse instead of better it makes for poor communication. Added in was the fact that my doctor was distracted by other priorities in her practice. Even so, by getting her attention (making her priorities my priorities) I am being tested for hormone probs. Unfortunately, this could be the tip of the iceberg and I'm hoping my predilection for hypochondria is still the case! In the research-my combination of symptoms can possibly be caused by Addison's disease which can be fatal. Knowing myself as well as I do makes this easier since I have thought myself dying of something or other~ about every other year of my adult life. What would be really hysterical: that I may be the 'boy who cried wolf' and this dying thing is real for a change. Hoping my testing comes out otherwise. I do have low thyroid, high DHEA, agression at times, finally dropping some extra weight and trying to get up the energy to exercise as well, hair loss stopped since I'm taking thyroid-why didn't we think of that sooner? At least I still look like I have lots of hair-its thick. The rosacea-yep the hyperpigmentation is actually rosacea on my neck and I will have IPL next week, topical antibiotics too. The message is stick with it and if the doctor can't figure out what is wrong with you-get another doctor and make sure you write down all the symptoms not leaving anything out! Good luck to ALL -be well!
    Momgrowdup 15 Replies Flag this Response
  • What a difference a week makes. Researching some possible diagnosis here was very helpful in my case. I have been thinking my hormones were messed up! Aggression added into a list of symptoms makes for an *interesting* mix. Doctors are human too, so when a patient is practically hostile that a condition is getting worse instead of better it makes for poor communication. Added in was the fact that my doctor was distracted by other priorities in her practice. Even so, by getting her attention (making her priorities my priorities) I am being tested for hormone probs. Unfortunately, this could be the tip of the iceberg and I'm hoping my predilection for hypochondria is still the case! In the research-my combination of symptoms can possibly be caused by Addison's disease which can be fatal. Knowing myself as well as I do makes this easier since I have thought myself dying of something or other~ about every other year of my adult life. What would be really hysterical: that I may be the 'boy who cried wolf' and this dying thing is real for a change. Hoping my testing comes out otherwise. I do have low thyroid, high DHEA, agression at times, finally dropping some extra weight and trying to get up the energy to exercise as well, hair loss stopped since I'm taking thyroid-why didn't we think of that sooner? At least I still look like I have lots of hair-its thick. The rosacea-yep the hyperpigmentation is actually rosacea on my neck and I will have IPL next week, topical antibiotics too. The message is stick with it and if the doctor can't figure out what is wrong with you-get another doctor and make sure you write down all the symptoms not leaving anything out! Good luck to ALL -be well!
    Momgrowdup 15 Replies Flag this Response
  • Dear Mom...you are not a hypochondriac and neither am I...Please visit www.ahummingbirdsguide.com please know this affects several different body systems from hormonal to GI to musculo-skeletal(joint pain) I and many people on this site have similar symptoms...look at posts where I've posted as mommy cat...those are the places you will find people with similar symptoms Several people are upset with me and consider me to be "spamming" my definition of that is passing on useless information...this info will help if you will take the time to look.....just look at headings of posts...they all say the same thing...debilitating...can't get a diagnosis...please help... at first I thought "of course, this is a wrong diagnosis website" then as I began to read posts, I realized I'm not alone in the world after all, there are hundreds on this site alone...read "Contagious Joint Pain" post and It's a mystery until we solve it" these should shed some light...Best to you...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thanks MommyCat, but I think I'll wait on what my tests come back as and ask for a referral (again) to an endocrinologist since this is not my physician's specialty. I have had an EKG recently due to the Optifast Plan I just began and my EKG was great, no cardiac symptoms. My joint probs are due to old knee injuries and I'm pretty sure ME does not tear cartilage even though I didn't read All the information. Numerous symptoms don't always lead to the exact same diagnosis. Addison's disease actually has all the signs my body has displayed-hormonal imbalance, stomach acid, constipation, especially thyroid. If I'd known this I wouldn't have been taking spironolactone for over a year to combat hair loss-when I stopped taking it my hair started falling out again. But it was blocking my DHEA and keeping the weight on. I feel that getting my doctor to listen to me was an important personal step. I could have gone elsewhere and had records transferred over but for me-its a small town and having a personality clash with this particular Dr. wouldn't work. Its hard to explain but she is now my friend and she owes me and she's working harder than ever to help me. Not for everyone, but this worked for me (so far). Thanks for reading my post and taking the time to respond-I feel less alone in the world because you cared. Be well!
    Momgrowdup 15 Replies Flag this Response
  • Dear mom...know that others have initially responded the same way as you have above, but after a closer look...many are responding quite differently...Just had a conversation with someone and told them I always had a reason for all of my symptoms too...joint pain---old sports injuruies...been a nurse a long time...pounding hallways for years...I found reasons for every symptom on my list and always chalked it up to those types of things.............I'm not telling you that you have ME...I'm just saying it's worth a closer look...There are many people responding back to me saying they did look closer and realized they had all found reasons for their symptoms too. Remember...you don't have to have every symptom you could have 3 or 100...it doesn't matter.The common thread seems to be the joint pain with many/most of the people who have responded already... Mine is so severe sometimes, I walk like the 80 and 90 year olds I've cared for, for several years.......God Bless mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thanks again MommyCat but I have to pass. You don't know much about my specific symptoms-but my old knee injuries were ACL repairs after a tackle at the knees (playing football). My surgeon tapped holes into the bone where cartidge had been removed to try and stimulate new cartidge. Instead, I have a large bone spur that catches when I first get up in the morning. Someday I will have a knee replacement-but I think taking this extra weight off will help. On the Optifast Diet Plan-this is only my 4th day...I've lost 8 pounds of water and probably a lot of waste in my colon. Remember that I have had constipation for years? I posted that. A regular fast for a few days would have taken care of that, but I wanted to have supervision and support. My son has a recipe for a one week fast that includes cayenne, maple syrup and lots of water and he had the same results of feeling mental clarity, seeing better, walking lighter. But I didn't want to do anything drastic like that without medical supervision. Fasting can cause electrolite imbalance leading to nausea. dizziness or even death (better to be under supervision). I will be starting an exercise program next week with a trainer and I can't wait! I've had cosmetic procedures recently to get rid of the bags over my eyes, Thermage to tighten my facial skin and saggy neck. I will have IPL to minimize the rosacea on my neck and have been given an antibiotic to stop it from getting worse-its not so bad on my face (looks like blusher). Like most people I have my down days. When I first posted here was one of them. And I looked around-discovering Addison's disease which is much more likely considering thyroid deficiency causes osteoporosis, weight gain and possibly constipation. The signals from my colon were causing the excess digestive fluids and at the moment (after the fasting) I was able to cut down my rantidine to 75 mg morning and night from 150 mg 2x daily. There is a reason nurses don't diagnose patients if in fact you are an RN (and you didn't actually state that you are). Doctors have licenses to diagnose patients and if you as an RN tried to treat patients in a hospital setting they would let you go... I urge patients who have multiple symptoms to stick with it. If the doctor you have been seeing isn't listening: write down all the symptoms don't leave anything out. Some things are related and sometimes you might have a bunch of problems that don't relate to the others. But stick with it. Be well!
    Momgrowdup 15 Replies Flag this Response
  • mom....I asked my doctor if Fibromyalgia could be a mild form of ME.there are mild, mod and severe forms...he had no reason to rule it out as a possibility.my mother has fibro as well as my aunt and sister in laws mother.............me, my cousin, my sister in law and her sister all went to same school at same time...we all have ME symptoms and our mothers all have fibro???my mother told me Montel did a show on a recent outbreak of Fibro in LosAngeles...............This am I'm contacting my doc and local health dept with this info.I wouldn't keep harping but this is serious and the first step is to believe it may be a possibility.Godspeed.mommy cat
    mommy cat 1654 Replies Flag this Response
  • Dear mom...sorry you had to be so nasty in your previous postpeople are here asking for helpI'm here giving it perhaps you will catch on too...no need for an apology as we all have bigger fish to fry in case you haven't noticed...there are hundreds...if not thousands on this site having symptoms of ME What did they do with the people who acquired ME in the 80's outbreak? They didn't quarantine themThey didn't give them medicine to make them betterThey let them come to our schools and pass it around...as well as the post office, banks ect...you get the drift??It's viral, contagious...even through just breathing...like a flu...Don't you see the numbers here alone with the same symptomsseveral friends/family with many similar symptomsmany people on this site alone...including you having symptomsit's everywhere see below So, you see, I am not an RN (yet) I was in A and P when I took ill and had to drop out...I am 4 classes away I am a NYS LPN...have been for 15 years...and no dummy I am not diagnosing peopleI'm merely suggesting, to the ones with ME symptoms, that ME may be a possibility Especially when you just look around this one little website I have to go...there are others who need my help that are willing to listen... God Bless You..mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thanks for keeping my post refreshed and you're right why apologize? An update: I went to my support group for OptiFast last night and was Really Disappointed that the participants who had been with the program 16-17 weeks weren't really WITH the program. They made excuses about not exercising, didn't think they should have to give up popcorn at the Movies 3X a week, didn't think they had to eat their expensive diet foods as directed and thought they should still lose weight. I was so disgusted I got on the treadmill as soon as I got home. All I could handle was 18 minutes. I got in 22 minutes this first thing this morning which was easier. I think hydrating before getting started will increase my capacity. I had the diet shake then sipped water while I was walking at 3% incline/3mph. Tomorrow I'll have the shake and 18 oz of water before I get started and see how that changes my capacity. I still want to try and get in more time today somehow (no excuses). To quote:"Don't you see the numbers here alone with the same symptomsseveral friends/family with many similar symptomsmany people on this site alone...including you having symptomsit's everywhere" Mommy Cat you ARE diagnosing people. I think Internet surfers would appreciate accurate information about facts and not medical 'help' from someone who dropped out of nursing school. It's dangerous and unhelpful to lump everyone together who shares a common symptom or two or three. I know you think you're helping but you aren't.
    Momgrowdup 15 Replies Flag this Response
  • you're rude...when you figure out, that like the other thousands of us, your problem is viral...I wish you well...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Better to let this post die Mommy Cat-you're getting to be a Stalker! I don't have anything viral-it would have shown up in my blood tests. I have low thyroid which can cause osteoporosis & weight gain. I have had serious knee injuries and now have a bone spur-how would that relate to a viral infection? You need to get some help for yourself in the psychiatric dept.
    Momgrowdup 15 Replies Flag this Response
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  • Yikes.. hope i am not starting your argument up again.. just a thought.. should your tests about Addison prove to be negitive, try a test for Celiac. Ive got the same kinds of symptoms and my doctor wouldnt test me because i am a bit overwieght and have the constipation instead of diarea. I found enough online research to convince him that you CAN be overwieght and constipated with Celiac Disease. I am waiting my tests now. Anjya
    Anonymous 42789 Replies Flag this Response
  • mom...did they do a test for parainfluenza 5?? that is the virus that causes ME as to date...there is no test for MEnot sure how doc could have ruled it out mom...I'm not a ***k...really Look at threads, read symptoms start writing them down...you'll see the patternvertigotinnitusfaintingsx of strokediarrheaflushing(most think it's hives)vomitingsneezing/new allergies/increased allergiestremors/twitches...where did restless leg syndrome come fromwhere did fibromyalgia come fromwhy the sudden surge in Autismwe all know this is happening but none of us know whymy grandmother never had Fibromy grandfather never suffered restless leg syndromein past 20 years...HUGE spike in Autism...yet noone knows whynightsweatsnightmaresinsomniaswollen lymph nodesabdominal painpale skin/dry skin/rashes/acneheart problems I could continue but, the way you feel about me right now...you probably rather I didn't not here to ruffle feathers...just to get others to see I, like so many others have been sick for years...unable to get diagnosedwhy is that??so many test, specialists, docs...and NOONE can figure any of us out...hence the facct we are all here in this forum...even you Be Well and God Bless...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thanks for your post Anjya. Celiac has been mentioned, but low thyroid and high cholesterol are more pressing symtoms at the moment. My Doctor asked me what my fluids intake was-and I had to admit I never drank water. Oops. On the Optifast Diet that I started last week, I Must drink at least 64 oz water a day and have to say that constipation is no longer present. note: Sometimes *symptoms* aren't caused by disease. I share concerns with Mommy Cat that this generation has ills not seen in our parents and grandparents-but rather than upsetting myself about it I have studied what I'm doing differently. My paternal grandparents lived to be 99 and 102. The maternal grandparents lived to 78 and 89-both of them smoked for years. None of them ate in fast food joints or restaurants for that matter...and there were always high fiber fruits and vegetables available from their gardens. None of the grandparents took medications except for multiple vitamins. I didn't come to the boards to be diagnosed by other patients, but having feedback is better than being ignored I'm sure. I have had complaints about my doctor ignoring symptoms like 15 years worth of constipation when I have taken all the over the counter fiber and laxatives-yet I was unwilling (until now) to drink an appropriate amount of fluids or eat properly! Is that Her fault? No. My cholesterol went from 230 to 240 in less than 6 months and so far this isn't alarming to the doctor. If I were a Male patient, I'd be on statins or some other treatment long ago. Women are treated differently from men when it comes to heart disease and this is a concern more pressing than M.E. and the coincidence of shared symptoms between patients in this forum. Women die just as frequently as men from heart disease and I think I remember the numbers are edging past men in recent studies. I am doing what I can to take care of my own health and ensure that the medical care I receive is adequate. I hope you do the same-but don't count on your answers to be here on the boards-sometimes you have to make a few changes in lifestyle like adding exercise and drinking water. OR staying away from fast food and excess fats. I thought I was doing everything right until I started having to count every calorie and start reading food labels. Now I shop the farmers market every weekend and there are no labels-but you don't have to worry about what is in fresh fruit and vegetables! ~Be well!
    Momgrowdup 15 Replies Flag this Response
  • Just so you'll know Anjya, I looked up Celiac disease and can't think why you or my doctor would mention it at all. I will ask her why she did though. I don't have diarrhea. I don't have malabsorption. Believe me my body has absorbed every possible nutrient from every speck of food I've ever eaten. And Mommy Cat-please lay off me with your M.E. talk, it makes me tired. I don't have half the symptoms you have. I have not had M.E. *ruled out* as you say...because no one thinks I have it except you! And you aren't a doctor. You aren't even a nurse. Please just use some restraint and stop posting. OH! maybe I could get a restraining order...you probably know a Lot about those too!
    Momgrowdup 15 Replies Flag this Response
  • Momgrowdup Ive enjoyed reading your venting on the board this week. And I am glad your feeling better, and that your excercising, eating better. You make me laugh (not at you), it brings a smile to my face.:) Cala
    Cala1234 57 Replies Flag this Response
  • Thanks Cala! You not only made me smile-the guilt! Now I have to get on the treadmill w/o excuses. I have to think about My Public! All new for me: not blaming others for being overweight. (Actually it IS my husband's fault because I eat regular meals now and the 60 pounds I put on in less than two years was after meeting him!) I would have liked to blame a disease-but that isn't working out either. Finally, a person who writes without noting her symptoms, you must be Really sick! I hope that turns out to be a funny....~Mary
    Momgrowdup 15 Replies Flag this Response
  • I'm not sure how open you are to a holistic approach to the issues that you have, but this are my thoughts:1. Constipation is directly related to the back pain. When body lacks water it scavenges it from different places, but particularly from you feces and spinal discs. I've sen many cases of that in my practice.2. Dysfunctional abdominal wall, lack of stabilization in mid section can easily cause back pain and knee injuries.3. Fosomax and the side effects from this pharmaceutical has been widely publicized lately. Eating food with high calcium content (green leafy vegetables for example) and responsible exposure to the sun (to produce vitamin D) are much more pleasurable and in a long run efficient solutions. 4. Stress is definitely is an issue an your Adrenals are fatigued. May be not quite an Addison Disease but possibly Stage 2 or 3 adrenal exhaustion. BioHealth Diagnostics has a great test for Adrenals. You welcome to contact me if interested to order.5. Nutrition is certainly needs to be addressed. Metabolic Typing Diet has one of the best customized diets on the market.6. Invest in your health. Look for the healthcare practitioners that are actually care. C.H.E.K practitioner in your area will be very helpful. I would also suggest to find a good acupuncturist and/or Chinese Medicine doctor7. Saliva Female Hormonal Profile is also highly recommendedHope it is not to much to digest:) Be Well!
    Aram Ovsepian 18 Replies Flag this Response
  • Mary LOL - don't feel guilty, feel the burn of the treadmill!
    Cala1234 57 Replies Flag this Response
  • A little guilt, a nudge, (a hammer) whatever it takes to make me keep my written promise for at least 30 minutes a day on the contraption. I'm going, I'm going....!
    Momgrowdup 15 Replies Flag this Response
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