Discussions By Condition: I cannot get a diagnosis.

variety of skin + digestive symptoms

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • August 31, 2009
  • 04:52 AM

Hello! I'm a 22 year old female Caucasian / Native American with a family history of immune diseases (MS, Lupus, RA, Thyroid, and Scleroderma) Very sorry for the wall of text, but I didn't want to leave out anything that might be important.

When I was an infant I had extremely bad projectile vomiting. I was admitted to the hospital. My doctor tried me on milk early. It didn't fix the problem, but it wasn't as bad, and saved me from surgery (was told there was a problem with where esophagus connecting to stomach, not sure the name, sorry). Since I was a baby, I've always had random vomiting (not relating to getting a cold or anything normal) though nothing alarming. Also, my skin has been really rough and itchy. I'd break out in hives for little to no reason. Otherwise, I was a pretty normal kid.

Around the age of 12 I hit a snag with a lot of fatigue. It wasn't feeling tired or sluggish all the time. Rather it felt like my arms, head, and legs weighed a tonne and I had to lay down. Also had chronic sinus infections. At 14 I was diagnosed with Chronic Fatigue and severe scoliosis which I had surgery to correct the following year. That same year (now 15), a few months prior to surgery, I began seeing blood in normal looking stool. Rather, blood in the toilet water. It looked like the entire bowl was bright red. Not being a fan of the doctor, I waited, and it went away. A few months later it was back with a vengeance. Extreme stabbing pain in the lower right abdomen, blood, diarrhea, anemia, and hunger. My doctor admitted me to the hospital where after a EGD, colonoscopy, barium swallow, and MRI i was diagnosed with crohns. The only thing noteworthy I remember about the tests were 1) i had severe anemia and 2) my insides looked like hamburger meat from the throat to my **m 3) a jello diet is no fun.

Since then, I've had lesser problems with diarrhea. It seems more a problem of constipation eventually followed a few days/weeks later by cramping/using the bathroom a lot and then, diarrhea. About once a year the bleeding will return and I go on prednisone. This always stops the bleeding. But, once I'm off it it just seems like a gradual decline from constipation/diarrhea > diarrhea > bleeding. The pentasa never seemed to help this at all. When I use the bathroom I get extremely painful cramping in my left side and it almost feels like I'm passing my intestines at times (I know this is not actually occuring, it just feels like it). Also there is an intense burning feeling from my insides to my rear end. About 50% of the time my stool will be very fatty or mucousy (over most of the stool), but I very rarely eat fatty foods and am very thin. I have had a standard blood test for Celiac and it came out negative.

More recently, within the last three years, I've started having problems with regurgitation. It occurs after everything I eat, sometimes for hours, even after consuming a tiny amount of food. I was put on Reglan and it seemed to help, but not totally fix the problem. However, the side effects were too strong. This is probably one of my biggest complaints lately as it makes eating very difficult. Drier food also tends to get stuck and cause the most problems. It feels like there is an intense pressure in my throat while eating which eventually comes up. And up. And up. After about 10-15 times having it come up again it becomes very acidic.

I've begun to have some difficulty remembering things that happened just a few hours ago or information given I cannot recall seconds after hearing it. A sort of "foggy" feeling and intense pressure. Though I think the last is probably more due to TMJ. My vision is also worse each year (enough difference for new glasses prescription), but both my parents wear glasses.

I have minor joint pains, mostly in my hands, hips, and knees.

I have been diagnosed with Reynauld's.

Been told by my dentist that my mouth is very dry and that my teeth are in poor condition due to both that and the acid from regurgitating so much.

My nose runs / itches daily.

I am still having problems with my skin. Generally, it is rough and itchy, sometimes even warm & painful. I will sometimes get psoriasis-like rashes (when i was a kid, my doctor told me this what what is was) that last for weeks. Most of the time I get either patches of flesh-coloured/pink raised bumps in a circle. Looks a little like higher goosebumps but only in a tiny spot. These disappear in a few hours. Or it will be a single, tiny, raised bump, sometimes red/pink, sometimes flesh-coloured, usually with a little blister on the top. Everything itches! I can't find anything in common with when these occur. I've been told I have anything from psoriasis to hives. Leaning more towards hives after literally watching these bumps come out during an allergic reaction to a drink. I also have some splotchy colouring on my legs that seems to get worse with tanning (was told this may be due to nerve damage from surgery).

The reason for my posting, is that my new doctor has told me he believes that I do not have Crohns. He's not sure what I have, but he does not believe it to be Crohns. Something about no structure damage to the intestine. I'm at a loss, my doctors seem to be confused, and I'm not sure what else to do. If anyone could please share ideas, I'm open to anything. Thank you so much!

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  • Hi from Africa :) Do try this experiment. For 7 days, eat only brown rice cooked in water, topped with steamed veggies (cabbage, broccoli, pumpkin, carrots, spinach, cucumber) and a little salt. Additionally, overcook veggies in water, discard the veggies and keep the remaining water in the fridge up to a day, to drink in between. For the rest, drink only water. Supplement only with slow-release vitamin C, about 500 mg per day. And take a good probiotic. In this way you eliminate meat, soy, milk, oils, eggs, yeast, wheat, overdose of vitamins, sugar etc. If you are better in a week, add deep ocean hake fish, without oil, steamed in a microwave. Then add some fruit, then beans, then fat-free cottage cheese, etc. If it gets worse, start from the beginning.In my case, I react alarmingly to meat, but fish is ok. This is hard for a Boer. I also need to be careful with soy, milk, oils, yeast and sugar. Others in my family are almost the same, my mom cannot even have fish. Others definitely no soy, yeast etc. Wheat is fine all round so we bake our own soda bread, with no yeast or soy and not much milk. We also now make fresh carrot juice and lots of fresh mung bean sprouts. All our problems are gone (some very serious) and we have much more energy than before. I don't know if it will last, but for now it works. Sprout your own mung beans - only from those meant for sprouting, other seeds have been poisoned for bugs. Eat a lot of sprouts (if it works for you), raw, discard the green hulls. And always stir some powdered ascorbic acid into rice before it boils, to remove molds. Try to eat everything immediately after cooking and not to keep leftovers, due to molding. Eliminate all toxins.I know the above diet from our Chinese Traditional Medicine (TCM) doctor. My mom (80) had very bad circulation together with eczema on her legs and feet. Plus difficult high blood pressure and a slow, irregular heartbeat. Very tired. Also incontinence, gout, and she had two light strokes. Having a good medical fund she went to all the expert Western doctors, in vain. The TCM doctor cured all of it. She has been off ALL medicine for over a year, only taking his herbs at times, and none of that either for 2 months now. She could hardly walk and now does 5 km per hour on a treadmill. He also fixed her hernia, that her Western doctor wanted to operate on - one could feel it from the outside, it got smaller and now it is gone - only from acupuncture and herbs. I myself had a history of severely bleeding hemorrhoids, anemia from that, sinusitus, fatigue, dry skin etc. All gone now, on the above diet. Mine seemed to be mostly from not digesting meat properly, which then disrupted the balance further down the system.Consider visiting a few Chinese shops / restaurants in your area. Ask their oldies who the best TCM doctor is around there. (Note however that many of them only believe in Western doctors.) Research this TCM doctor a bit, once found. Here in South Africa we have a council they should belong to, one can reclaim their fees from medical funds etc. All this is needed but proves nothing yet, so ask many real Chinese as well - there is an invisible energetic side to their most useful doctors. If s/he is from Taiwan and a Taoist/Buddhist, they seem to try harder. Expect results even after 1 or 2 visits, as you are young. Try www.acufinder.com
    Curly Stooge 319 Replies
    • September 1, 2009
    • 02:17 AM
    • 0
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  • Hello! I'm a 22 year old female Caucasian / Native American with a family history of immune diseases .......!Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms. PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup ) Symptoms of Lyme DiseaseThe Tick Bite (fewer than 50% recall a tick bite or get/see the rash)Rash at site of bite Rashes on other parts of your body Rash basically circular and spreading out (or generalized) Raised rash, disappearing and recurring Head, Face, NeckUnexplained hair loss Headache, mild or severe, Seizures Pressure in Head, White Matter Lesions in Head (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny noseEyes/VisionDouble or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes Ears/HearingDecreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both earsDigestive and Excretory SystemsDiarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)Musculoskeletal SystemBone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia), Sore soles of feetRespiratory and Circulatory SystemsShortness of breath, can't get full/satisfying breath ("Air hunger"), cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockageNeurologic SystemTremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, woozinessPsychological well-beingMood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxietyMental CapabilityMemory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasksReproduction and SexualityLoss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge, milk production Testicular or pelvic painGeneral Well-beingUnexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature Allergies/Chemical sensitivities Increased effect from alcohol and possible worse hangover Most people report that they have never been bitten by a tick, but here is the culprit. They are most likely to transmit Lyme in this nymph stage. It is little wonderwe don't always realize we've been bitten.A REGULAR BLOOD TEST WILL NOT DETECT LYME DISEASE! You MUST send your blood to a lyme lab. www.igenex.com is the lyme lab that can properly detect lyme antibodies. People are dyingof this disease because of false negatives. If you think you need to be tested for lyme, or have any questions at all, feel free to write me: DesertDreaming@gmail.com I will be happy to give you more information regarding the next step in getting properly tested and to answer any of your questions.Good luck and God bless you! Sadie
    Anonymous 42789 Replies
    • September 1, 2009
    • 07:24 PM
    • 0
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  • Have they done any stool studies? Checking for parasites or rogue bacteria in the gut. Check for h. pylori? Read about CFS (Chronic Fatigue Syndrome) and see the symptoms, these are yours. CFS is really about infections. There are some specific tests you can do that may help.
    LINENUP 122 Replies
    • September 2, 2009
    • 03:10 AM
    • 0
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  • You should go get checked for Celiac Disease, which is caused by gluten intolerance. All of your symptoms can be traced back to the problems caused by gluten intolerance. Gluten is a protein found in wheat, rye, and barley (and is in a LOT of stuff). When gluten is ingested, it flattens the villi in your small intestine and causes malabsorption of nutrients. The physical manifestations of Celiac Disease can be wide and varied, but key gut symptoms, thyroid problems, and yes, even skin irritations, are common to Celiac Disease.You can be tested with a simple blood test, but will need an endoscopy to determine if you have extensive gut damage. In the meantime, I would recommend trying a gluten-free diet. Some people start to notice a major improvement in their overall health in just a week or two. Gut damage can be extensive, though, and it can take years for your body to fully heal.There are other possible explanations for your symptoms, of course, but this is a good place to start. An estimated 1 in every 100 people in the US are gluten intolerant, and awareness over the past decade has increased greatly.Good luck!
    Anonymous 42789 Replies Flag this Response
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