Discussions By Condition: I cannot get a diagnosis.

Please help!!! i just want to be healthy again!

Posted In: I cannot get a diagnosis. 37 Replies
  • Posted By: Joint pain
  • April 15, 2008
  • 03:01 AM

it all started about a year and a half ago, the symptoms started like this and built up over this year.



Joint pain


Stiff neck


Raised skin rash


Thrush (on the tongue)


Headache (24/7)


blurred vision


Stomach pain


Heart Palpitations


Circular rash on the back of hands (only showed for about a week)


Dizziness (happens for about 60 seconds after i stand, no this is not head rush.


Bowel Disfunction (i can eat like crazy but i never feel like i have to go number 2, and i rarely go number 1. the last time i have even seen a toilet was about 1 day and a half ago)


Shortness of breath (if i walk up the stairs i nearly pass out, and i gasp for air. it also feels liek there is fluid in my lungs?)


Swelling of the joints and random areas of my arms


Hemorrhagic skin rash (doctor says these are "Capillaries" popping under my skin)


sore throat


decreased appetite


sleep problems


extreme fatigue


i searched all my symptoms on google and got:

Lyme Disease, Addisons disease, Fibromyalgia (spelling?) amd Celiac Disease.

i also just had an MRI for MS (still awaiting results)

also i am going in for blood tests tomorrow, if anybody needs to know what im being tested for i will gladly let you know :D

my moms family has a history of arthritis but i was tested for JRA and was NEGITIVE. also when i was little i got rashes like the ones im getting now, so im GUESSING they are connected. i have allergies but they are under control and i was tested for more allergies a few weeks ago, these rashes are NOT allergies

so that was just a little bit of my history,

im 13, male and i cant do anything anymore :( can somebody please help?

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37 Replies:

  • Join Lymenet. Even if your Lyme test is negative, you still could have it, and most docs won't check you for the coinfections unless and until you pull a positive Lyme first. Lymenet will help you find a doctor to treat. When to Suspect Lyme: http://www.angelfire.com/biz/romarkaraoke/whento.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php thank you, i was not tested for lyme yet but i will check those links out! any more ideas are very welcome! and if anybody would like to agree on the Celiac disease, addisons or fibro diagnosis i would be happy to hear your thoughts
    Joint pain 19 Replies Flag this Response
  • thank you so much! i will join and see if i can find a doc. also more ideas are very welcome. also if anybody would like to agree with the Celiac disease, addisons lyme or fibro i would be very happy to hear your toughts!
    Joint pain 19 Replies Flag this Response
  • i have had many of the symptoms, i have been sick for 3 yrs. have they considered lupus? let me know tests/results. also, an mri isnt the definitive way to test for ms, sometimes a spinal tap may be more accurate.. Good Luck
    Anonymous 42789 Replies Flag this Response
  • poster wrote "Lyme Disease, Addisons disease, Fibromyalgia (spelling?) amd Celiac Disease".((Lyme is a possiblity, Addison's is an adrenal issue that is resulting from an immune response, Fibromyalgia is just another name for CFS -however FM seems to be more viral based which I don't think is an issue for you & Celiac is more than likely caused by a pathogenic organism (bacterial, or parasitic) All these symptoms are consisent w/ Chronic Fatigue Syndrome.... The basis of your issue is an infective agent, when infection hits the body all systems go and multiple symptoms occur. Go to the CDC or NIH site for related information. The adrenals (and pitutitary/hypothalamus) (sp) are all involved in this - this is probably a Th2 immune response (probably either a bacterial or parasitic infection) with the rash (rings) that sounds like Lyme. But with the GI problems sounds like either a parasitic infection (helminth, protozoa, microsporidia or fluke) or a bacterial infection. Make sure you support yourself w/ adequate nutrition, the joint pain, muscle pains are fallout from an immune reaction, supportive nutrients such as magnesium(not oxide) b complex family, vit C etc. will help diminish some of these problems. This is not in your head as you may have been told by ignorant (I use that term w/out anger) doctors. Support of the adrenals is critical = there is some evidence of using cortisone for help... I have used vitamin B5, b2, b6 w/ adequate vitamin C supplementation as well as a glandular adrenal complex. But there is no doubt you are suffering w/ an infective agent, and doubt the causitive factor is NOT viral,fungal or yeast, more than likely a parasite or bacterial situation. PCR testing can be a big help, also finding an good infectious disease doctor. Stool sampling for pathogenic organisms may or may not be helpful = oftentimes they are unreliable, but you might get lucky and get a hit. If you want any other info (which of have loads) please post.
    LINENUP 122 Replies Flag this Response
  • Thrush (on the tongue) (INDICATIVE OF yeast/fungus overgrowth or congested liver which would be normal w/ an infectious agent ... Headache (24/7) ((sign of either toxicity or stress... immune activation will cause this stress... magnesium should helpblurred vision (sign of oxidation from the immune response... try some antioxidants)Stomach pain (aka as "gastritis" .. sign of infectious agent in the gi tract)Heart Palpitations (again probably fallout from the infectious agent, evoking the adrenal response... again magnesium would be helpful but not mag oxide - other electrolytes could be a problem, = overactive thryroid could be a caustive factor, but I would lean towards the magnesiiumCircular rash on the back of hands (only showed for about a week)((typical sign of lymes, but other pathogens can cause rashes))Dizziness (happens for about 60 seconds after i stand, no this is not head rush. ((probably from adrenal exhaustion. the adrenals are partipating in the immune response... ))Bowel Disfunction (i can eat like crazy but i never feel like i have to go number 2, and i rarely go number 1. the last time i have even seen a toilet was about 1 day and a half ago)((prob. caused by an infectious agent))Shortness of breath (if i walk up the stairs i nearly pass out, and i gasp for air. it also feels liek there is fluid in my lungs?) ((prob an infectious agent, many infections like microsporidia and ascaracis can inhabit both the gi tract and the lungs )Swelling of the joints and random areas of my arms((from an immune response = classic CFS symptoms)Hemorrhagic skin rash (doctor says these are "Capillaries" popping under my skin)sore throat ( classic CFS symptom - from an infectious agent GI infections will cause sore throats)decreased appetite (congested liver?)sleep problems (another classic symptom of CFS ... the immune system is creating some agitation in the body .. magnesium or magnesium w/ calcium should help))extreme fatigue ((another classic symptom of CFS ))
    LINENUP 122 Replies Flag this Response
  • I STATED:: "But there is no doubt you are suffering w/ an infective agent, and doubt the causitive factor is NOT viral,fungal or yeast, more than likely a parasite or bacterial situation." SHOULD READ "But there is no doubt you are suffering w/ an infective agent, and doubt the causitive factor is viral,fungal or yeast, more than likely a parasite or bacterial situation.
    LINENUP 122 Replies Flag this Response
  • poster wrote "Lyme Disease, Addisons disease, Fibromyalgia (spelling?) amd Celiac Disease". ((Lyme is a possiblity, Addison's is an adrenal issue that is resulting from an immune response, Fibromyalgia is just another name for CFS -however FM seems to be more viral based which I don't think is an issue for you & Celiac is more than likely caused by a pathogenic organism (bacterial, or parasitic) All these symptoms are consisent w/ Chronic Fatigue Syndrome.... The basis of your issue is an infective agent, when infection hits the body all systems go and multiple symptoms occur. Go to the CDC or NIH site for related information. The adrenals (and pitutitary/hypothalamus) (sp) are all involved in this - this is probably a Th2 immune response (probably either a bacterial or parasitic infection) with the rash (rings) that sounds like Lyme. But with the GI problems sounds like either a parasitic infection (helminth, protozoa, microsporidia or fluke) or a bacterial infection. Make sure you support yourself w/ adequate nutrition, the joint pain, muscle pains are fallout from an immune reaction, supportive nutrients such as magnesium(not oxide) b complex family, vit C etc. will help diminish some of these problems. This is not in your head as you may have been told by ignorant (I use that term w/out anger) doctors. Support of the adrenals is critical = there is some evidence of using cortisone for help... I have used vitamin B5, b2, b6 w/ adequate vitamin C supplementation as well as a glandular adrenal complex. But there is no doubt you are suffering w/ an infective agent, and doubt the causitive factor is NOT viral,fungal or yeast, more than likely a parasite or bacterial situation. PCR testing can be a big help, also finding an good infectious disease doctor. Stool sampling for pathogenic organisms may or may not be helpful = oftentimes they are unreliable, but you might get lucky and get a hit. If you want any other info (which of have loads) please post. Thrush (on the tongue) (INDICATIVE OF yeast/fungus overgrowth or congested liver which would be normal w/ an infectious agent ... Headache (24/7) ((sign of either toxicity or stress... immune activation will cause this stress... magnesium should help blurred vision (sign of oxidation from the immune response... try some antioxidants) Stomach pain (aka as "gastritis" .. sign of infectious agent in the gi tract) Heart Palpitations (again probably fallout from the infectious agent, evoking the adrenal response... again magnesium would be helpful but not mag oxide - other electrolytes could be a problem, = overactive thryroid could be a caustive factor, but I would lean towards the magnesiium Circular rash on the back of hands (only showed for about a week)((typical sign of lymes, but other pathogens can cause rashes)) Dizziness (happens for about 60 seconds after i stand, no this is not head rush. ((probably from adrenal exhaustion. the adrenals are partipating in the immune response... )) Bowel Disfunction (i can eat like crazy but i never feel like i have to go number 2, and i rarely go number 1. the last time i have even seen a toilet was about 1 day and a half ago)((prob. caused by an infectious agent)) Shortness of breath (if i walk up the stairs i nearly pass out, and i gasp for air. it also feels liek there is fluid in my lungs?) ((prob an infectious agent, many infections like microsporidia and ascaracis can inhabit both the gi tract and the lungs ) Swelling of the joints and random areas of my arms((from an immune response = classic CFS symptoms) Hemorrhagic skin rash (doctor says these are "Capillaries" popping under my skin) sore throat ( classic CFS symptom - from an infectious agent GI infections will cause sore throats) decreased appetite (congested liver?) sleep problems (another classic symptom of CFS ... the immune system is creating some agitation in the body .. magnesium or magnesium w/ calcium should help)) extreme fatigue ((another classic symptom of CFS )) I STATED:: "But there is no doubt you are suffering w/ an infective agent, and doubt the causitive factor is NOT viral,fungal or yeast, more than likely a parasite or bacterial situation." SHOULD READ "But there is no doubt you are suffering w/ an infective agent, and doubt the causitive factor is viral,fungal or yeast, more than likely a parasite or bacterial situation. thanks for all the replys :) i will take all the advise you have given me and use it, but one thing im kinda confused about (sorry im having a hard time staying focused on thoughts because im so tired) are you leaning mostly towards CFS? again thanks for the replys, im gonna get a few hours of sleep so i can actually focus on reading full paragraphs. but i am really greatful for the replys!
    Joint pain 19 Replies Flag this Response
  • thanks for all the replys :) i will take all the advise you have given me and use it, but one thing im kinda confused about (sorry im having a hard time staying focused on thoughts because im so tired) are you leaning mostly towards CFS? again thanks for the replys, im gonna get a few hours of sleep so i can actually focus on reading full paragraphs. but i am really greatful for the replys! You are welcome!!! I have suffered and have done million of hours of research (probably exagerating a little! ;))) But happy to help you anytime. I have spent considerable time researching, talking to all the experts, and experimentation on myself. CFS is just another word for "chronic infections" .... Doctors are kind of stumped when you present yourself with these "strange" symptoms, especially when your blood tests come back "normal" . Doctors understand things from the training they rec'd and typically do not think "outside the box". But what you have is a nasty bug that is causing all these problems. Find the bug, eliminate the bug and all your symptomolgy will go "poof". But I bectha it is in the intestinal tract and more than likely a bad bacteria, protozoa or helminth (. http://mdheal.org/parasites.htm) need to find a doctor than can help. Shoot back a reply if you got more ??????????s
    LINENUP 122 Replies Flag this Response
  • Spondylarthropathies, maybe. Try here: http://www.wrongdiagnosis.com/s/spondylarthropathy/intro.htm
    aquila 1263 Replies Flag this Response
  • Are you taking any medications, for acne or other? Have you been to the doctor? If you cannot pee and haven't for over 24 hours - you need to head to the ER as this is very dangerous! Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Could it be lupus? This can easily be checked for with some blood tests if it hasn't already been ruled out.
    ruth40 55 Replies Flag this Response
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  • Spondylarthropathies, maybe. Try here: http://www.wrongdiagnosis.com/s/spondylarthropathy/intro.htm thanks ill look at that link soon! Are you taking any medications, for acne or other? Have you been to the doctor? If you cannot pee and haven't for over 24 hours - you need to head to the ER as this is very dangerous! Best wishesDOM i only took an acne cream for 1 week, i am on Nexium right now, along with an antibiotic mouth wash for the thrush. both have not worked. also, i was thinking..... can a low appetite cause this bathroom problem? becuase now i only eat things like watermelon, grapes, ect. but yesterday i ate (forced myself): steak, mash potatos, rice, and drank a great amount of juice. HOURS LATER i didnt feel the need to go number 1 or 2! Could it be lupus? This can easily be checked for with some blood tests if it hasn't already been ruled out. i had a blood test. it was negative. as i like to quote from House: "Its never lupus"
    Joint pain 19 Replies Flag this Response
  • I love "HOUSE" as well;) Well, being a thyroid sufferer myself I go for the thryoid as it has so MANY vague and hard to diagnose symptoms and also because many doctors often fail to test, or properly test this very common condition: Here is my post from another thread but I think it also applies here....hope it helps! Hate to see anyone suffering needlessly when this can be fairly simple to diagnose and treat in many cases..... "Thyroid can account for most of those symtpoms, fatigue, hair, memory and more and be a bit tricky to diagnose if not under the care of the right doctor. Many GP do not properly test for this very common problem...especially among women...do you have a family history of thryoid? Even if you don't it is a strong possibility. Get tested for FT4, FT3, TSH and the antibodies for Hashimotos Disease and Graves Disease the autoimmune diseases of the thryoid...very common...and treatable under the care of a good doctor...the specialist is called an endocrinologist. ANd DO check out Mary Shomon's site on thryoid...great info and a forum with great ladies who can help you get started and understand your lab results...do test the thryoid...I have seen many folks suffer needlsesly for YEARs, yet testing is only a simple blood test...and it is often fairly easy to treat as well...." Joan
    Joan5555 316 Replies Flag this Response
  • thanks ill look at that link soon! i only took an acne cream for 1 week, i am on Nexium right now, along with an antibiotic mouth wash for the thrush. both have not worked. also, i was thinking..... can a low appetite cause this bathroom problem? becuase now i only eat things like watermelon, grapes, ect. but yesterday i ate (forced myself): steak, mash potatos, rice, and drank a great amount of juice. HOURS LATER i didnt feel the need to go number 1 or 2! i had a blood test. it was negative. as i like to quote from House: "Its never lupus" How often are you urinating a day? Do you wake up at night to urinate? How often do you have a bowel movement? DOM
    acuann 3080 Replies Flag this Response
  • How often are you urinating a day? Do you wake up at night to urinate? How often do you have a bowel movement? DOM Uhmmm.... i urinate once every day or so, i wouldnt say i wake up, since i dont really sleep but i rarely urinate during the night. i have bowel movements once every few days, its really weird... like it will FEEL like its gonig to be diarrhea but then its not. also the pain in my right leg is getting very bad, and whats even wrose, is im getting the same pain in my left leg!!! the pain in my right leg went from certain points in the knee, down the shin, then the ankle, then the foot, now the tigh. it is VERY painful, my cafe muscle always burns, and it is worse in my tigh but the course it followed (listed above) is the place it would hurt most, now it is following the SAME course in my lef leg..... also around the ball on my wrist, the skin around it is constricted. it looks like dry skin.. but its not? and my wrist swells to double size same with my other wrist and both my hands. when it swells, the bleeding under my skin gets worse. OH also, thank you very much for the thyroid suggestion. i will try to gte my parents to make the doctor order tests, we asked him to before but he wouldnt. so it wont be easy. also i will go to that forum you suggested, thank you very much!
    Joint pain 19 Replies Flag this Response
  • You are young, so let your parents read what we have written here! Print it out for them. Go to the thryoid site I mentioned and print out information....your parents love you and if your doctor will not test, tell your parents you want to see another doctor...one who WILL....there is no reason on this earth why you should continue to be so unwell when there is help, and GOOD doctors who are more willing to get to the bottom of this! GOOD LUCK! Joan
    Joan5555 316 Replies Flag this Response
  • Uhmmm.... i urinate once every day or so, i wouldnt say i wake up, since i dont really sleep but i rarely urinate during the night. i have bowel movements once every few days, its really weird... like it will FEEL like its gonig to be diarrhea but then its not. also the pain in my right leg is getting very bad, and whats even wrose, is im getting the same pain in my left leg!!! the pain in my right leg went from certain points in the knee, down the shin, then the ankle, then the foot, now the tigh. it is VERY painful, my cafe muscle always burns, and it is worse in my tigh but the course it followed (listed above) is the place it would hurt most, now it is following the SAME course in my lef leg..... also around the ball on my wrist, the skin around it is constricted. it looks like dry skin.. but its not? and my wrist swells to double size same with my other wrist and both my hands. when it swells, the bleeding under my skin gets worse. OH also, thank you very much for the thyroid suggestion. i will try to gte my parents to make the doctor order tests, we asked him to before but he wouldnt. so it wont be easy. also i will go to that forum you suggested, thank you very much! Have you had your blood potassium levels checked? A complete urinalysis and stool exam done?DOM
    acuann 3080 Replies Flag this Response
  • Have you had your blood potassium levels checked? A complete urinalysis and stool exam done?DOM i went for a blood test today, im not sure if they were checking for potassium levels, i can find out though :). also while i was there they asked for a urine sample, but will they do a complete urinalysis or just certain tests? also i am going to do a stool sample test where they check for "ova and parasites" You are young, so let your parents read what we have written here! Print it out for them. Go to the thryoid site I mentioned and print out information....your parents love you and if your doctor will not test, tell your parents you want to see another doctor...one who WILL....there is no reason on this earth why you should continue to be so unwell when there is help, and GOOD doctors who are more willing to get to the bottom of this! GOOD LUCK! Joan hi! :) so far they have been reading it, so far they have written every suggestion down to ask the doctor about. i will go to that site and print info, and yeah my parents were harsh... they called and said if he didnt do the tests then we would find another doctor. it worked! :D thanks so much for the support and good praise, i cant wait for them to find out whats wrong so it can be treated :)
    Joint pain 19 Replies Flag this Response
  • Also,in additon to the thryoid, you may want to have through testing of the kidneys....lack of peeing is a concern....are you taking enough liquids during the day? Stay away from the soda pop....drink water and juices, at your age glasses of milk. Since you have digestive issues, I am also wondering about food allergies and or FOOD SENSITIVITIES. Have you been tested for Celiacs disease (one kind of food allergy)? Food sensitivities can also be a concern and hard to spot. You may want to talk to the doctor about a special diet to see what might be causing you problems...and food sensitivies and allergies CAN cause other physical distress. I wish you the best of luck! You sound like a smart, tough kid! If you have any more questions please do come back here...we are all willing to help you! :) Joan
    Joan5555 316 Replies Flag this Response
  • I would like to add this, since you are a 13 year old boy, and probably out and about Lyme is a real possibility (as was suggested by another poster) and it is good you are being tested. Here is a quote from CDC: "Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics." Just another thought...Joan
    Joan5555 316 Replies Flag this Response
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