Discussions By Condition: I cannot get a diagnosis.

Strange set of symptoms and no diagnosis so far

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: hanbur
  • August 15, 2009
  • 06:27 AM

I have a strange set of symptoms- cause currently undiagnosed.

I have been getting progressively more tiard over the last year. I have also had digestive problems for a long time (about six months) which at first was just dull-ache in stomache but about four months ago i started to get blood in stool, severe cramps and sharp pain in my stomache.

Two months after this i began to get joint pain in my rists, fingers, knees and ancles. I am now largely unable to walk- i think because of this. However i have no swelling in my joints.

At the same time i got joint pain i started to have low-grade fevers (around 37.8), feel disy and generally a bit out of it.

Fever has now subsided as have digestive symptoms. All that remains is extreem tiardness, pain in joints, headache most of the time, and i have strange sores at the corners of my mouth.

I have had a CT scan, colonoscopy, numerous blood-tests, stool and urine samples taken, and tissue samples from my insides to check for cancer. All have come back negative except for two points.

1) I have some fluid on my lungs
2) I have a small indication of swelling in my blood count (on one test but not another)

Thanks for your help! (Any and all suggestions welcome!)

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13 Replies:

  • If you haven't been tested for Celiac, I would do so. It causes different symptoms for different people. I know someone who had a big problem with joint pain and then found out he had Celiac and once off gluten, the joint problems went away. There are a couple of different tests for it. A blood test won't always be conclusive.
    Anonymous 42789 Replies
    • August 15, 2009
    • 11:22 PM
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  • Things not previously mentioned: -dry, sometimes sore eyes-sore throught-neck sore and stiff on left side-occasional swelling above rib cage on left side (small area)-memory (short term) has got considerably worse- occasional sever stinging when i need a wee (worse when i need it than when actually going) Im 25 and im finding this all really frustrating. Have seen a gastroenterologist so far, he ran the tests listed in the main post and then said he thought i was recovering from some kind of virus (didnt know what) so i should rest untill i felt better. But it feels to me like thats a bit of a cop out. I want to be able to do things, not lie in bed for months and months without an idea when ill get better!
    hanbur 9 Replies
    • August 16, 2009
    • 09:37 AM
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  • Hi Thanks for replying :) Ive had the blood test for ceiliac disease, but not the others. Ill look into that! Having said that I did go for a while without eating glutan or wheat but it didnt seem to make any difference. Hmm Any other sugestions? Thanks again
    hanbur 9 Replies
    • August 16, 2009
    • 10:41 PM
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  • I have digestive problems now going on 9 years I went to a gastroenterologist and had a colonoscopy done which came out negative a while back, I also had blood work and have taken many meds that have not helped out some were over the counter and prescribed. I get bloated, gassy, cramps and the worst part is when I get nervous my stomach hurts really bad it has taken over my life and I have been through many physicians and im tired of them telling me that there is nothing wrong. Current doctor now thinks it might be psychological and thinks I need to see therapy I know im not crazy and I feel like talking about it is not gonna help. I tried meditation and relaxation but my nerves control my stomach to the point where I cant take it anymore. I really need some advice
    Anonymous 42789 Replies
    • August 17, 2009
    • 07:14 PM
    • 0
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  • Hi thereFirst off untill a few years back all IBS was thought to be psychological. We now know its not. Most IBS is a disorder of the 'function' of the bowels- which means theres nothing wrong with the actual bowel itself, so it wouldnt show up in a colonoscopy- but the *way it works* is wrong.Second, there is a psychological componant to IBS. Everyones tummy reacts when they're stressed because the 'fight or flight' system which humans have evolved to have under pressure effects the bowles. Everyone has a week spot- one particular area of the body which reacts when stressed. Sounds like yours is your tummy. This doesnt mean your crazy/insaine/imagining things. It might mean that you have alot of anxiety or stress in your life and this effects your stomache. And if that is the case then a therapist would be able to help you master techniques to help combat the harmfull effects of the 'fight or flight' instinct.If, which sounds like the case to me, you have both IBS and anxiety related issues then your tummy is likely to be very unhappy. But therapy might actually relieve some of the pain.I hope you get some relief soon.. and dont worry, your not imagaining it and your definately not crazy! hanbur xx
    hanbur 9 Replies
    • August 18, 2009
    • 08:46 AM
    • 0
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  • Hi, I would be asking for labs to detect B12 and folate deficiencies. I deal with them and the symptoms you describe. Good LuckThings not previously mentioned: -dry, sometimes sore eyes-sore throught-neck sore and stiff on left side-occasional swelling above rib cage on left side (small area)-memory (short term) has got considerably worse- occasional sever stinging when i need a wee (worse when i need it than when actually going) Im 25 and im finding this all really frustrating. Have seen a gastroenterologist so far, he ran the tests listed in the main post and then said he thought i was recovering from some kind of virus (didnt know what) so i should rest untill i felt better. But it feels to me like thats a bit of a cop out. I want to be able to do things, not lie in bed for months and months without an idea when ill get better!
    Anonymous 42789 Replies
    • August 18, 2009
    • 01:33 PM
    • 0
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  • Ive had many of those symptoms for over 3 years me and a buddy. Anyway give a Infectious disease specalist a shot. They tackle alot of the hard stuff. Just do your research on your doctors before you choose them. Dont expect them to be nice. I learned fast nice doesnt matter its what they know. Anyway dont stop. It took me 2 years of ***l before I even saw one doctr and I have gotten the farthest with Infectious desiease specialist. Thats what house is if that helps
    chevyy1212 19 Replies
    • August 19, 2009
    • 03:04 AM
    • 0
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  • Thats interesting! Ive recentally been told i have a yeast infection at the corners of my mouth and i know that can be caused by lack of minerals and vitamins. My full blood count came back fine though- would this detect such deficiencies? Also, do you have problems moving around? Thanks hanbur Hi, I would be asking for labs to detect B12 and folate deficiencies. I deal with them and the symptoms you describe. Good Luck
    hanbur 9 Replies
    • August 19, 2009
    • 10:16 AM
    • 0
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  • Thanks for replying. Out of interest, what do they think youve got? I have a partner and id hate it i infected her too! Thanks Hanbur Ive had many of those symptoms for over 3 years me and a buddy. Anyway give a Infectious disease specalist a shot. They tackle alot of the hard stuff. Just do your research on your doctors before you choose them. Dont expect them to be nice. I learned fast nice doesnt matter its what they know. Anyway dont stop. It took me 2 years of ***l before I even saw one doctr and I have gotten the farthest with Infectious desiease specialist. Thats what house is if that helps
    hanbur 9 Replies
    • August 19, 2009
    • 10:18 AM
    • 0
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  • Ive been on the look out for rashes recentally since my gp has taken blood tests for lupus. Last night i had a raised pin-****k red rash on one area of my back. It was in a strange pattern- all the dots were lined up vertically so it looked like brail or the computer pattern from the matrix! This morning when i woke up some of the rash had faded so that what was left was a circle of pinpricks. Very odd! I cant find anything about this type of rash. Input would be appriciated! Ps. I might get the lupus tests results back today. If i do i will post to say what happened.
    hanbur 9 Replies
    • August 20, 2009
    • 06:31 AM
    • 0
    Flag this Response
  • I have a strange set of symptoms- cause currently undiagnosed. I have been getting progressively more tiard over the last year. I have also had digestive problems for a long time (about six months) which at first was just dull-ache in stomache but about four months ago i started to get blood in stool, severe cramps and sharp pain in my stomache. Two months after this i began to get joint pain in my rists, fingers, knees and ancles. I am now largely unable to walk- i think because of this. However i have no swelling in my joints. At the same time i got joint pain i started to have low-grade fevers (around 37.8), feel disy and generally a bit out of it. Fever has now subsided as have digestive symptoms. All that remains is extreem tiardness, pain in joints, headache most of the time, and i have strange sores at the corners of my mouth. I have had a CT scan, colonoscopy, numerous blood-tests, stool and urine samples taken, and tissue samples from my insides to check for cancer. All have come back negative except for two points. 1) I have some fluid on my lungs2) I have a small indication of swelling in my blood count (on one test but not another) Thanks for your help! (Any and all suggestions welcome!)Ive been diagnosed with Osteomyelitis in my left great toe. I have a horrible appetite and severe stomach issues. My toe is twice the size if not bigger than my other great toe. The doctors know nothing about what they're doing and all say their puzzled. The only thing i can do to get some sort of relief is smoking cannabis. Im well aware of the law but when there is nothing else you can do... If you have the pains i have described. All im saying is... It helps me...
    Anonymous 42789 Replies
    • August 20, 2009
    • 09:18 PM
    • 0
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  • So, i went to the docters on thursday to get back my blood tests for lupus (plus several other things). They were all clear. Which is good :) Unfortunately the GP i saw was horrible and tried to tell me i had an anxiety disorder rather than a physical illness. How an anxiety disorder would cause fluid on my lung, blood in my stool etc is beyond me! Ok, maybe im anxious but who wouldnt be if you really couldnt work out what was wrong and had been very ill for months!? Dont get me wrong, there is mental illness in my family and i would not be ashamed or resistant to a diagnosis if i really believed it was valid. But currently i just dont! Anyway, in the end (after a harrowing half an hour of saying, 'but symptoms x, y and z cant be caused by anxiety...' the GP finally said there was one other option- that i had ME. He said there was nothing more they could do for me at the GP surgery since they had run all possible tests (by which i took him to mean bloods) and so he has refered me to a MS specialist. I dont know how to feel about this at the minite. I hope i dont have ME, but at the moment any diagnosis would be a relief! I have a strange set of symptoms- cause currently undiagnosed. I have been getting progressively more tiard over the last year. I have also had digestive problems for a long time (about six months) which at first was just dull-ache in stomache but about four months ago i started to get blood in stool, severe cramps and sharp pain in my stomache. Two months after this i began to get joint pain in my rists, fingers, knees and ancles. I am now largely unable to walk- i think because of this. However i have no swelling in my joints. At the same time i got joint pain i started to have low-grade fevers (around 37.8), feel disy and generally a bit out of it. Fever has now subsided as have digestive symptoms. All that remains is extreem tiardness, pain in joints, headache most of the time, and i have strange sores at the corners of my mouth. I have had a CT scan, colonoscopy, numerous blood-tests, stool and urine samples taken, and tissue samples from my insides to check for cancer. All have come back negative except for two points. 1) I have some fluid on my lungs2) I have a small indication of swelling in my blood count (on one test but not another) Thanks for your help! (Any and all suggestions welcome!)
    hanbur 9 Replies
    • August 22, 2009
    • 05:04 AM
    • 0
    Flag this Response
  • I got my tests back for lupus, osteoarthritus and glandular fever. They were all clear. This is great news and a weight off my mind! :D Sadly i had a horrible consultation with my GP about the tests. My usual one was away on holiday (stupid august month!) and so i saw a random GP. He was really tactless, and told me 'there is nothing physically wrong with you'. When probed it seemed he thought this because he had run out of tests that could be performed at the GP surgery. He tried to tell me that i had an anxiety disorder rather than a physical illness. Im a psychology student (ment to be doing a PhD next year) and mental illness also runs in my family. Im not afraid or ashamed of being mentally ill, because i have worked and lived with people i love who are. However, on this occasion i dont buy the anxiety explanation. For one thing it does not explain the symptoms which have been recognised by tests (like fluid on my lungs and inflamation in my body). For another, i have been anxious before (and taken meds for it) and i dont feel anxious now. I feel worried that i dont have a diagnosis and i currently cant leave the house on my own or work, but thats it. I told the GP this over and over again (and unfortunately also birst into tears) and eventually he said that there was one other option- ME. Hes refered me to an ME specialist. Im so utterly sick of not knowing whats wrong with me. I want my life back!!
    hanbur 9 Replies
    • August 22, 2009
    • 01:22 PM
    • 0
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