Discussions By Condition: I cannot get a diagnosis.

My body hates me...HELP!

Posted In: I cannot get a diagnosis. 26 Replies
  • Posted By: eukepepper
  • January 22, 2008
  • 10:06 AM

I'm hoping someone has some ideas in what direction I can try next. I apologize, this is long. I initially tried keeping it short, but gave up and just let it run to two posts. Please just bear with me (curse my wordiness if you want). I have an abbreviated list of symptoms at the end. I'm not sure if this is one, two, or more problems. But I'll list everything.

I'm a 22 year old (23 next week) female, 5'4", 97 lbs. I am generally fairly active; between work and "play" I am always walking/running/lifting/climbing/hauling. Or am when I can. I exercised at a gym this past summer around 4 times a week, but am no longer able. I am not, and have never been sexually active.

1/1/02, I was having breakfast with a friend when I was suddenly extremely nauseous. My heart was racing, and I got very lightheaded. After a couple of minutes, my heart and head settled, though my stomach took much longer. I was able to finish my meal, but I had to force it down. This went on every time I ate (with a couple of random exceptions). Over the next couple of months, I saw three or four different family doctors. All of them started out fine, but ultimately ended up totally disregarding my complaint as if I was making it up. Most said it was stress and left it at that.

I had been working on a play, and it finished, along with semester finals. I was at about as low-stress as I could get. But it actually got worse. Instead of fading after a while, sometimes the nausea would just keep going. There were weeks when I was constantly nauseous. The only relief I found was sleep and not eating long enough for the nausea to fade. I fluctuated between 105 and 109 lbs. throughout high school, even with the stomach problems.

When I left for college, the nausea persisted, though it had been relatively calm the summer before. In my first year of college, I dropped down to about 100 lbs. Second year ('04-'05) I dropped below 100, and have since rarely been able to get it above.

I had a number of tests run, through different labs. We spent some time working at a lyme diagnosis (though I have never been bitten by a tick, and they are extremely rare around where I live). My doctor was rather obsessed with that at the time (when she felt it wasn't all in my head). Needless to say, we exhausted that option. She sent me to an allergist, for a possible food allergy. Only thing I reacted to in the skin ****k panel was ash trees (which was mistakenly pricked instead of almond). Finally, she sent me to an gastroenterologist (only took her 5 years to figure out she had no clue what she was doing with me...why I didn't just dump her, I don't know).

Gastro had a few ideas. Celiac disease was his primary concern. Bloodwork showed negative. Chronic giardia was his next idea, which is actually very likely, since a nearby lake that I visit regularly is known to have issues with it. I was put on Flagyl for a two week trial. After ten days, it proved to be making me even sicker, and he pulled me off of it. Obviously not giardia. He did an endoscopy. My stomach was very happy looking, physically. He found nothing wrong.

We checked my gallbladder with a HIDA scan. Not only was my gallbladder functioning, it was just as over-achieving as I am, with a very high rate. Abdominal ultrasound looked normal as well. Finally, the gastro told me to try fiber, since it was probably an abnormal manifestation of IBS.

The fiber had a teeny, tiny beneft for about two months. Or rather, it did right away, then nothing changed for about two months. Then I got extremely sick one night, and it was fairly clear to everyone around me that I have a bigger problem with lactose intolerance than was thought (cheese enchiladas for dinner). I've known for some time that milk bothered me. But after some work, we discovered that I was "reacting" to even very small amounts. Heavy monitoring of my dairy intake and lactase supplements helped immensely. Not entirely, but enough to be able to function for the most part. Before, I had already been driven out of my 4-year university and to a less demanding 2-year program, with a semester off in between.

That lasted about 6 months. Then new things started cropping up. I was working in a retail job, and it was the holidays. So I initially attributed the intense fatigue I began feeling to that. I can't really say when it started. Sometime around Thanksgiving, I think. Around New Year's, various joints began aching. Worst was my right knee, which I have had problems with since dislocating the patella in June '99. It began dislocating again. I couldn't make it through an 8 hour shift without ending in excruciating pain. Through the spring semester, the fatigue (main problem) and the pain forced me to choose between work and school. Since I needed the money, work came first. I failed half my classes, and compromised a C for the rest. Once upon a time, I was an A student, with a very physical reaction to a fear of failure (read: less than a B). Luckily I had all those stomach problems to get me over that fear and just accept that sometimes life sucks and grades aren't indicative of my intelligence.

I moved back home after the semester, in May '07. Incidentally, that was the last time I had a period. It's been nearly nine months. Though, perversely, I'm not all that upset about it. When they used to come, I would spend 3-5 days curled up in pain, sick to my stomach. I don't miss it, except for the normalcy factor. Over the summer, I began having dry skin, mouth, and eye problems. Not severe. It's NOT humid here, though not entirely arid either. But I was reacting slightly more noticably than normal.

Backtracking, I was "diagnosed" with fibromyalgia in the spring. By diagnosed, I mean: my doctor figured on one of three things being the culprit. Lupus, RA, or fibromyalgia. My ANA, sed-rate, and Rf were normal, as was an x-ray of my hand (pick a joint, any joint, and that's what hurt that day). So he (note "he", I finally got rid of the impotent earlier doc) ruled out lupus and RA. He admitted to using fibro as a garbage can diagnosis. I have NO tender points, and the only muscle aches I get are from something I did physically or because of how I was compensating for aching joints. He put me on Elavil (amitriptyline) 10mg/day. It helped send me to sleep at night, which was nice. We gradually ramped up the dosage to 60mg/day. The only thing that accomplished was a case of RLS every time we changed the dose. I also had very, very lucid dreams. No nightmares, though, so it wasn't really a problem. However, the pain was still there, and the fatigue wasn't really gone, just better scheduled. So I stopped the Elavil, and he tried Neurontin. After a week, I went in for a follow up. I had been on what he felt was the minimum dose that would have ANY effect. It didn't help at all, but I couldn't sleep at night for the hallucinogenic dreams I was having. He immediately pulled me from it. This left me completely unmedicated. If the pain gets too bad, sometimes I'll resort to NSAIDs and Tylenol, but I have to take such a large dose of so many to feel ANYTHING that it's not worth it. It's more a psychological benefit than anything else when I do resort to them. I haven't since September, though.

I was sent to a rheumatologist. She did a full work-up on me, and ordered an antigliadin AB panel (IgA and IgG antibodies), a Wallingford IgG food panel, and a re-test for celiac (blood). All came back normal, with the exception of a high result for black pepper. She didn't suggest anything other than to follow up in 6 months (March) and probably check in with an endocrinologist, because of the lack of periods. She also noted MVP, though no murmur, and said it was too mild to worry about. She also said the fibromyalgia diagnosis is pretty much rubbish, though we kept it because it makes me feel better to be able to say SOMETHING is wrong. Even if it isn't right.

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  • Here's the second part. I saw the endocrinologist. She sucked my blood dry (literally, we had to switch arms with two vials to go) checking:Basic Metabolic Panel ACTH, plasma Anti-Thyroid AB Panel (Anti-TPO, Thyroglobulin) Cortisol AM Estradiol, E2 FSH HCG, Serum, Qualitative (Pregnancy) Lutenizing Hormone Progesterone, Serum Progesterone, 17-OH Prolactin T4 Free TSHThey all came back normal, though I haven't seen the results, so don't know numbers on anything.That was in the beginning of December. She told me that according to the tests, I should be having a period in two weeks. If I didn't, call back and arrange an brain MRI. Needless to say, I didn't have one, so I called back. The MRI, though, looked normal.Now, I'm left completely without direction. The pain and dryness fade slightly with rain and humidity. The fatigue has gotten worse, and pulled in a random insomnia. Now, the insomnia's mostly gone, unless I try to sleep on a normal schedule. The only way I can get a full "night"'s sleep is to follow my body and fall asleep around 6AM. I've gotten out of that a few times, falling asleep around midnight. But that only lasts one night. It's as if my body is very determined to be awake all night.Also of note: I get a lot of canker sores, usually have around 10 a month, with one specific one that I feel is related to my wisdom tooth removal (always over one of two scars). For about the past month, I've also had nasal congestion that isn't affected by OTC Claritin or prescription Nasacort spray, cold decongestant, steam, or Vapo-rub. Astelin spray helped, for about an hour. It's giving me a pretty constant sore throat, and I think is related to the (mostly) dry cough that's developed. It's worse at night. I am constantly cold. We’ve found my house has to be at 74 deg. (expensive) before I feel comfortable without a robe and blanket, which doesn’t usually keep me warm. My feet don’t seem to generate heat, so KEEPING them warm is not an option if I don’t GET them warm first via external sources. I also have low blood pressure and a fast heart rate, and have my whole life.Does anyone have any ideas of where to check next? I'm really tired of being sick. Or at least being sick and not knowing why. Thanks. Symptom recap: nausea with eating (palpitations and lightheadedness accompany), mostly attributed to lactose intolerance since 1/1/02fatigue since late 11/06joint pain (all joints, except jaw) since about 1/1/07amenorrhea since 5/30/07dryness (primarily eyes, followed by skin, then mouth) since 6/07, with a major change for the worse starting 9/07canker sores all my life, with a worsening off and on over the past yearnasal congestion, with accompanying sore throat and dry cough that doesn't seem to be a cold or allergies since about late 12/07.cold intolerance all my life, MUCH worse since 9/07low b/p and fast heart rate my whole lifeBlaze, no, we actually sent the labs out to some specialized place. She also checked for babesia and mycoplasma. Not the other two you listed. But we've pretty much agreed that it's NOT what's going on. Also, I was on an intensive antibiotic regimen for a serious lung infection about three years ago. All it did was get rid of the infection. And it may have been a side effect, but I was able to eat even less for about 6 months during and afterward. As far as I've heard, Lyme will get better with antibiotics, yes? It definitely didn't. And the weight loss is actually logical, since I wasn't eating. It was by no means unexplained. If I continue eating (which I'm now able to do for the most part), I'll maintain, or even gain a little weight.As for the electrical thing. I actually feel better with electric stimulus. The worst I've felt yet was on a week long camping trip in the middle of nowhere, with the only electrical anything being the vehicle we drove there in. So I don't think that's it.Thank you for your input, though. If you or anyone else has any other ideas, I'll be truly grateful.
    eukepepper 10 Replies
    • January 23, 2008
    • 07:27 AM
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  • Hi Eukepepper,first thing that came to mind was kidney failure, it can cause extreme nausea and fatigue... but then, you'd have oedema all over your body and that would also raise your blood pressure. As an early sign, none the less, so I think this is ruled out.The way I see it, the majority of your symptoms are related to weight-loss: low blood pressure, cold intolerance (a very specific sign, unless your thyroid gland is OK... is it?), amenorrhea, dry skin, tiredness, even the frequent infections... it seems to be all connected. Except for the joint pain...I know your tests came back negative, but RA is also a likely solution... main points of diagnosis are joint pain/stiffness, and loss of appetite (and that would cover all the other symptoms). It can also cause eye problems, and skin conditions.I hope you don't mind me asking a few more questions: about the joints: Is there "only" pain, or notable swelling, stiffness, tenderness, and redness around the affected joint? How much does it detain you from your daily routine? For example, if your knee hurts, can you stand on that leg/walk? Have your synovial fluid ever been analyzed? The tests performed in the diagnosis of RA are: C-reactive-protein (CRP on bloodwork?), Rheumatoid Factor, joint x-ray. It's important that you know that only in 75% of RA cases is the RF positive... so your (so far) negative reports definitely do not rule this out. What about antibodies? You've written about your ANA, but were others ones measured? For all we know, could be lupus... no rash, though? No photosensitivity? Unlikely, then.anna
    annaPEB 29 Replies
    • January 23, 2008
    • 08:25 AM
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  • I have been assured time and time again my thyroid is just dandy. Though that was all based on TSH levels. I did finally get T3 and T4 and thyroid antibody tested, and my endo said they were normal, though I don't know the numbers on them.The joint pain is just that. Only pain. No swelling, not redness. They crack nearly constantly, and sometimes grind (the big ones, mainly). I can usually function on a moderate basis despite pain. But if my hands hurt badly, there's little I can do, and if my knees or ankles hurt, walking will actually make the pain progressively worse. For RA, they only checked Rf, sedimentation rate, and a hand x-ray. They all came back normal. And I think (could be wrong) the only antibody (aside from those listed in the hormone panel) checked was ANA.I did have some sun sensitivity this summer, but it's equally possible it was caused purely by my body as it was from the Elavil, so I really couldn't say. And I haven't really been in the sun much since then (overcast much?). And I have a pretty much constant rash across my chest, but I've never really given much thought to it. It's not the butterfly rash I know is characteristic of lupus, at least.What would be checked if my synovial fluid was analyzed?
    eukepepper 10 Replies
    • January 23, 2008
    • 08:38 AM
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  • Abscess Skin rashes Skin infections Athlete's foot Poor skin healing Urinary tract infections Candida Thrush Dry itchy skin *Flaky skin Skin ulcers Skin boils Peripheral neuropathy Paresthesias Foot tingling Foot numbness Hand tingling Hand numbness Blurred vision Sexual problems Erectile failure Unusual vaginal dryness Premature menopause Absent periods *Poor healing - any type of difficulty healing of minor infections, injury or after surgery. Weight loss *Weight gain Drowsiness Malaise * These are symptoms of diabetes. Does anything else look familiar?
    rad-skw 1605 Replies
    • January 23, 2008
    • 10:33 AM
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  • Nope. Though I do have occasional blood sugar problems. Low, not high. Not frequently enough so that I can tell if it's related to when/what I eat either. Mostly just annoying. Well, now that I know what it is and how to fix it, it is. Before then I had some serious hypoglycemic episodes that my diabetic manager eventually caught and told me how to resolve.There was some sort of glucose test run in the hormone panel, but I don't really know much about it.Actually, that's not entirely true. I do get blurred vision, but I'm nearly positive that it's because of the dry eyes, since that's when it seems to be a problem.
    eukepepper 10 Replies
    • January 23, 2008
    • 10:45 AM
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  • What's a diabetic manager? Hypoglycemia is commonly associated with diabetes. However, a wide variety of conditions, many of them rare, can cause low blood sugar in people without diabetes. Like fever, hypoglycemia isn't a disease itself, it's an indicator of a health problem.In people who don't have diabetes, some underlying causes of hypoglycemia include: certain medications; alcohol; certain cancers; critical illnesses such as kidney, liver or heart failure; hormonal deficiencies; and disorders that result in your body producing too much insulin. Insulin is the hormone secreted by your pancreas that regulates your level of blood sugar.Treatment of hypoglycemia involves short-term steps to get your blood sugar level back into a normal range and long-term steps by your doctor to identify and treat the underlying cause of hypoglycemia.Here's another quote . Hypoglycemia may also result from: Medicines, such as monoamine oxidase inhibitors (MAOIs), quinine sulfate, and salicylates (including aspirin).Drinking too much alcohol.Diseases that affect the pancreas, liver, kidneys, adrenal glands, or other organs.Inherited problems with metabolism.Rapid stomach emptying after a meal. This may happen after stomach surgery.So the hypoglycemia might have nothing to do with diabetes, but might involve other glands/organs.
    rad-skw 1605 Replies
    • January 23, 2008
    • 11:03 AM
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  • What's a diabetic manager?My manager at the time, where I worked, who happens to be diabetic.
    eukepepper 10 Replies
    • January 23, 2008
    • 00:08 PM
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  • I have been assured time and time again my thyroid is just dandy. Though that was all based on TSH levels. I did finally get T3 and T4 and thyroid antibody tested, and my endo said they were normal, though I don't know the numbers on them.The joint pain is just that. Only pain. No swelling, not redness. They crack nearly constantly, and sometimes grind (the big ones, mainly). I can usually function on a moderate basis despite pain. But if my hands hurt badly, there's little I can do, and if my knees or ankles hurt, walking will actually make the pain progressively worse. For RA, they only checked Rf, sedimentation rate, and a hand x-ray. They all came back normal. And I think (could be wrong) the only antibody (aside from those listed in the hormone panel) checked was ANA.I did have some sun sensitivity this summer, but it's equally possible it was caused purely by my body as it was from the Elavil, so I really couldn't say. And I haven't really been in the sun much since then (overcast much?). And I have a pretty much constant rash across my chest, but I've never really given much thought to it. It's not the butterfly rash I know is characteristic of lupus, at least.What would be checked if my synovial fluid was analyzed?Well, I don't think you have RA, either. Something else is causing your joint pain...If your synovial fluid was analyzed, they would check for sugar, protein (as I understand), and see if it shows any signs of inflammation (change of color and viscosity). How would you describe the rash on your chest? Is it constant? Does sunlight provoke it? Red or scaly?Anyway, I've just read something that may be relevant:"Hypercalcaemia (high serum calcium level): constant feeling of thirstiness (?),loss of appetite, nausea, vomiting, weight-loss, muscle conditions, fatigue, strong itching of skin, calcium in the cornea, hence eye problems, AND calcium -aggregation around joints with joint pain." It sounded a lot like your case, as I was reading it before.Bad news is that a ***l of a lot things can cause it... can be primer, secunder, tertiaer... can be related to the bones, kidney, parathyroid glands...Let me know if you recognize the symptoms as yours...anna
    annaPEB 29 Replies
    • January 23, 2008
    • 01:22 PM
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  • Hi Eukepepper, Here is a list of many symtoms and such that go along with b12 and folate deficiencies. A person might have just a few or most of the list and others not on this list. The symtoms tend to shift around a lot for many. A lot of them are progressive and a later stage obsures an earlier stage. I had about 75 of these symtoms at one time and more than 100 of them lifetime. I only have a few of them left now, and those generally much improved. I was undiagnosed by over 100 practitioners over time and only a selfintiated methylb12 trial demonstrated undeniably that I had severe deficiencies. How many do you have in all? How many do you have that are NOT on this list? Good luck. B12 DEFICIENCY SYMTOMS, SIGNS AND CO-CORRELLATEShigh urine MMA (specific shortage of adenosylcobalamin) high serum homocystein (specific shortage of methylcoabalmin) mouth sensitive to hot and cold sore burning tonguebeef-red tongue, possibly smoother than normalsore mouth, no infection or apparent reasonteeth sensitive to hot and coldburning bladder (no UTI)painful urgency (no UTI)burning urethra (no UTI)burning muscle painaccumulating muscle pains following exertionsore muscleslack of muscle recovery after exerciseexercise does not build muscledyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etcflatulencealtered bowel habitsabdominal painloss of appetite for meat, fish, eggs and/or dairy foods, the ONLY foods containing b12 - nutrient specific anorexiaintermittent constipationintermittant diarrheairritable bowel syndromeCrohns disease (direction of causality if any not established)Celiac disease (direction of causality if any not established) - gluten sensitivityDairy sensitivity, lactose and/or proteins (direction of causality if any not established)Sores, ulcers and lesions along entire GI tract or any partreduced libido - loss of sexual desireloss of orgasmic intensity, unsatisfying orgasmsinability to orgasmloss and/or change of genital sensationunable to become arousedMENerectile disfunctionWOMENpost partum depressionpost partum psychosisFalse positive pap smearsmenstrual symptomspalenessrapid heart rateshortness of breathheart palpitationsweak pulsecongestive heart failureHypothyroid (direction of causality if any not established)psychosis, including many of the most florid psychosis seen in literature, formerly known as megoblastic madnessAlzheimers (very recent research, 2007)irritabledepressionmaniadizziness - even unable to walkdeliriumdementiaparanoiadelusionshallucinationsmental slowingpersonality changeschronic malaisepoor concentrationmoodinesstirednessmood swingsmemory losslistlessnessanxiety or tensionnervousnessimpaired connection to othersmentally fuzzy, foggymild to extremely severe fatiguecontinuous extremely severe fatigueeasy fatiguabilitysevere abnormal fatigue up to and including apparent paralysis leading to deathweaknesssleep disordersnon restorative sleepalteration of touch all over body, can be unpleasant and painfulalterations and loss of tastealterations and loss of smellloss of smell and taste of strawberries specificallyroughening and increased raspiness of voice, can smooth in mid word with methylb12blurring of vision - can be sudden onset and sudden returndimmed vision - usually not noticed going into it because change can be very slow, or present for lifeVisual impairment can be seen; ophthalmological exam may show bilateral visual lossoptic atophycentrocecal scotomatadiminished hearing - gradual onset or present for life, sudden returntinnitus - ringing in earsalways feeling coldBrainstem or cerebellar signs or even reversible coma may occurneural tube defect not caused by folate deficiency or child with itdemyelinated areas on nervessubacute combined degenerationaxonial degeneration of spinal cordunsteadiness of gaitataxic gait, particularly in darkpositive Rombergpositive LhermittesPositive bilateral Babinski reflexneuropathies, many typesprogressive bilateral neuropathiesdemyelination of nerves - white spots on nerves on MRIsloss of detail and sensual aspects of touch all over bodyparesthesias in both feet - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both legs - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbnessLoss of position sense is the most common abnormality (or vibration sense)Loss of vibration sense is the most common abnormality (or position sense)hands feel gloved with loss of sensitivityfeet feel socked by loss of sensitivitytoes turn up instead of down in reflex to sole stimulationsudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movementstanding with eyes closed, a slight nudge or bump causes loss of balancemost patients have signs of both spinal cord and peripheral nerve involvementMotor impairment may range from only mild clumsiness to a spastic paraplegiaclumsinessslowed nerve impulsesThe effect on reflexes is quite variabledecreased reflexesdifficulty swallowingbrisk reflexesbrisk reflexesimpaired white blood cell responsedecreased deep tendon reflexpoor resistance to infectionseasy bruisingpronounced anemiamacrocytic anemiamegablastic anemiapernicious anemiadecreased blood clottinglow hematocritMCV > 94 first warning, MCV > 99 alert (Mean Corpuscular Volume)elevated MCH (Mean Corpuscular Hemoglobin)elevated LDHbig fat red cells (when said this way usually with happy or healthy modifying it, completely misinterpreting results of MCV)platelet disfunction, low countwhite cell changes, low countheadachesinflamed epithelial tissuesinflamed endothelial tissuesmucous becomes thick, jellied and stickydermatitis herpetiformis, chronic intensely burning itching rashfrequent infected folliclesSeborrheic dermatitisdandruffeczemadermatitisskin on face, hands, feet, turns brown, or yellow if anemia occurspoor hair conditionthin nailspainfully tight muscles, especially legsfrequent muscle spasms anywhere in bodyBariatric surgeryDilantin and some other medicationsrelative (parent, grandparant, sibling, child, grandchild, ever needing B12 shots or supplementsAS INFANT OR CHILDdelayed myelinationfailure to thriveautismdelayed speechdepressionfrequent toncilitisfrequent strepfrequent pneumoniafrequent longlasting supposed viral illnesses that linger and linger and lingereverything goes to the lungs for extended periodsheadachesgrowing painsskin problemsdandruffallergiesasthma
    Freddd 3576 Replies
    • January 23, 2008
    • 10:23 PM
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  • I just read the most interesting thing last night and it sounds very much like what you describe! It is called Wilson's Temperature Syndrome and is related to a chronically lower than normal body temperature and also with thyroid system function (I know you said your tests were normal but if you go to the website and read about it you will understand why this is not a reason to assume that your thyroid is functioning properly!!!). The website is www.wilsonsthyroidsyndrome.com and was extremely interesting (but very long!) and even has a place to check for a doctor in your area familiar with this syndrome and it's treatment. It explains that most doctors are unaware of this syndrome so if you just went to your own doc they probably wouldn't know what you were talking about. However, there is a free e-book that is meant for physicians that you could direct them to or print for them if you feel that you may have symptoms compatible with the syndrome. Hope this helps!
    Anonymous 42789 Replies
    • January 24, 2008
    • 01:07 AM
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  • Anna, that does sound possible, but my calcium levels were normal. Unless it only shows in a different type of test than that used for a CBC.Fred, wow, that's a long list! I do have a number of them at varying times. It's something I'll definitely look into. Who would I talk to about it? My GP?
    eukepepper 10 Replies
    • January 24, 2008
    • 09:45 PM
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  • Hi Eukepepper, Yes it is quite a list. I compiled the lists from multiple sources. It's amazing how much difference there is as to what makes it on the list in one country versus another. Does this indicate a genuine national difference perhaps due to diet patterns and secondary deficiencies? I don't know but I had lot's of symtoms from each coountry's lists. THere is a lot of variability depending upon which list one looks at in any given country. Have you ever found any doctor willing to hear a recitation of 60-80 symtoms? I haven't. How many symtoms do you have that you stopped reporting years ago because nobody thought that they meant anything. I've had IBS since high school, until a few years ago. I had the red burning tongue for 20+ years. Go in well equipped, say the list with your history of all the symtoms on the list and all the ones that are NOT on the list. One of my problems in getting a diagnosis was the shear quantity of symtoms "Too many to be believable" according to one doc. I was off to see a roundrobin of specialists none of whom could figure out what was going on by looking at their own small selection of symtoms. One of the things that appears to correlate strongly with b12 deficiency is the shear volume of symtoms across multiple bodily systems. And remember, if some of it is b12 deficiency, clearing that up vastly simplifies the diagnostic procedure as those things heal and diminish leaving behind those that don't.
    Freddd 3576 Replies
    • January 24, 2008
    • 11:13 PM
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  • Over the summer, I began having dry skin, mouth, and eye problems. Not severe. It's NOT humid here, though not entirely arid either. But I was reacting slightly more noticably than normal. Sjogren's syndrome is a disease characterized by dryness, most commonly of the eyes and mouth. It can occur as a primary condition or as a secondary disorder associated with other types of arthritis such as lupus or rheumatoid arthritis You may not be aware of this but with ceilac disease http://www.wrongdiagnosis.com/c/celiac_disease/symptoms.htm, 10% of the cases are missed with the normal blood tests for it as they show up as negative .. the most accurate tests for it is the genetic one to see if you have the genotype for it (if not, you wouldnt have it, if postive..you could have it).. or a small bowel biopsy which will show it up or not.
    taniaaust1 2267 Replies
    • January 25, 2008
    • 00:10 PM
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  • She didn't suggest anything other than to follow up in 6 months (March) and probably check in with an endocrinologist, because of the lack of periods i didnt realise this but the lack of period fits in with someone who has missed celiac disease too. http://www.wrongdiagnosis.com/c/celiac_disease/symptoms.htm
    taniaaust1 2267 Replies
    • January 25, 2008
    • 00:15 PM
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  • I've always thought that celiac disease pretty much went hand in hand with fairly drastic weight loss, though. I did know that the blood test is fairly unreliable, but it just hasn't seemed like that likely since my weight has been stable (within a small range). I lost some, but it wasn't much in the grand scheme of things, and it's stopped there. I haven't kept losing it. Well, weight and more digestive problems than nausea.If I'm wrong, that's definitely something to look into as well. Heck, at this point, I'm so frustrated it's probably something to look into even if I'm right!
    eukepepper 10 Replies
    • January 25, 2008
    • 00:29 PM
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  • I've known for some time that milk bothered me. But after some work, we discovered that I was "reacting" to even very small amounts. Heavy monitoring of my dairy intake and lactase supplements helped immensely. Not entirely, but enough to be able to function for the most part. I have a lot of problem with food intollerances myself, including dairy. I'd like to say due to that that it has been my experience that it's best avoiding entirely, those things you know you react too.. You may seem to be okay with just a tiny amount so believe your "heavy monitoring" of how much you are having is going well.. but when you also have in your diet other things which you may be reacting to as well, each one, maybe only a little bit which may not be all that noticable if just taken alone.. but combined.. well the reaction to the foods all adds up. I've tried to lactose free milk..but found out it is something (or probably as well as) other than the lactose i react too as well.. as i also react to goats milk and lactose free milk. (fortunately in my case that food intollerance became clear as I get also a headache from the milk within minutes... followed by gastro at later time. Food reactions also make me feel tired). So anyway.. basically what i was trying to say was that if you know you react to a certain food.. best to avoid it entirely and get your calicum from other sources.
    taniaaust1 2267 Replies
    • January 25, 2008
    • 00:46 PM
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  • "Constant rash across my chest" Describe it, how big?, how long has it been there? Have you shown your doctor? any other rashes? Do you live on the West Coast of the US? A white Mucous in your mouth?
    TerryG 120 Replies
    • January 25, 2008
    • 01:08 PM
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  • Tania, I had eliminated dairy entirely from my diet, and have worked back to a level where I can deal with. I too will react from time to time to the lactose "free" milk, but only enough to make me feel nauseous for a minute or so. I don't worry about it. However I still felt nauseous with no dairy at all in my diet. That was for about three months.Terry, the rash is red and splotchy, with small bumps. Doesn't itch or burn or anything, it's just there. It is mainly over my sternum, spreads up and down about two inches, and is about 4-6 inches across (varies). It's been there for at least 8 years, though it's possible it's been longer. Yes, I live on the West Coast. No, no white mucus.
    eukepepper 10 Replies
    • January 25, 2008
    • 05:30 PM
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  • ... the rash is red and splotchy, with small bumps. Doesn't itch or burn or anything, it's just there. It is mainly over my sternum, spreads up and down about two inches, and is about 4-6 inches across (varies). It's been there for at least 8 years, though it's possible it's been longer...The doc that told you no lupus seen that rash?Perhaps you should have your ANA levels checked again in a few months. If you'd like to get more information on this, visithttp://forums.wrongdiagnosis.com/showthread.php?t=22949read second reply. :)anna
    annaPEB 29 Replies
    • January 26, 2008
    • 08:49 AM
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  • Is there a recommended time that I should wait between ANA tests? The last one (only one) was in May. We didn't really completely take lupus off the table, but there wasn't really a whole lot going for it.My GP has not seen the rash. I've never really considered it. It doesn't bother me, so I tend to forget about it unless specifically asked. I have a gyno appt. this week. I'll see if she has some insight to it. And I also need to head back to the GP soon anyway, so I'll tell him as well.
    eukepepper 10 Replies
    • January 26, 2008
    • 09:39 AM
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