Discussions By Condition: I cannot get a diagnosis.

Ill for over half a year and doctors are unable to diagnose me. Please help!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • April 13, 2009
  • 00:32 PM

Hi there, thanks for reading this. I really hope someone could help.
I am female, 16 years old.
I have been ill since October 2008. It all started with me being diagnosed with a throat infection. At this time my family and I were living in a damp house with mould growing (we have moved now). I was put on anitbiotics for my throat infection. As soon as I had finished my antibiotics I contracted another infection, this time I think it was an ear infections and was put on antibiotics again. Towards the end of October, just as I was finishing another course of antibiotics, I went on holiday to Scotland for a week with my parents and boyfriend. During this holiday I was extremely fatigued but didnt have any other symptoms. At the end of out holiday, urination was painful and I had to go frequently and there was a bit of blood in it. When I got back home I went back to the doctors and was given more antibiotics for a urinary tract infection. These antibiotics made me feel sick so I went back to the doctors and was given anti-sickness tablets. These tablets didn't work so again I went back to the doctors and was given different antibiotics which made my face swell slightly so my mum made me go back to the doctors again. I saw different doctor and he gave me another set of antibiotics which worked.
As soon as I had finished these antibiotics, I went back to school and got another infection. The entire time I have been extremely fatigued.
One day in November 2008, I was lying on the sofa and then got up to go into the kitchen. As soon as I made it into the kitchen i became very dizzy and started getting dots infront of my eyes. These dots multiplied and then I could'nt see anything. I had to hold onto the fridge as my knees were shaking which I had no control over and I could'nt see anything. This passed in a few minutes and I carried on. I carried on getting infection after infection and being pumped full of antibiotics.
In January 2009, once we had moved out of the mouldy house I was still getting infections. I fell asleep on the sofa. Again, I stood up to go somewhere and my boyfriend stood up with me, I became very dizzy and the dots appeared infront of my eyes again. This time I wobbled and collapsed but my boyfriend caught me. I don't think I was shaking this time.
I still carried on getting infections.
Recently, I have started having palpitations, shortness of breath and cold sweats at night. Because of these palpitations, I had an ecg done at my doctors surgery which they said was fine. It would also be worth mentioning that I have had multiple blood test done which have all coem back normal.
In March 2009, I stood up from the sofa to go in the shower. The dizziness and dots appeared again. This time they were worse than ever. My mum witnessed what happened and told me that I had stopped moving, fell back into the sofa, my eyes rolled back and I was shaking all over. (Shaking more like a fit than because I was cold).
After this, my mum rushed me to hospital but I kept telling her I was fine. While I was in the hospital, there was another ecg done which came back fine and the doctor checked my blood and said it was normal.
About a week ago, I spent a whole night throwing up and slept the entire next day annd night. Just after that I went to the doctors again and was told I have another throat infection and sinus infection. I am on antibiotics for that now.
My neck has become very stiff and painful and my glands are swollen everywhere. I was told that my stiff and painful neck, painful ears and jaw are because of my swollen galnds.
It would also be worth mentioning that I am pale all the time and have quite a high temperature. I have had many recurrent sinus infections during this time and my sex drive has become pretty much none existant.
Also, I am very very emotional. I cry over everything now and my temper has gone crazy which is very strange because I used to be a very very calm and happy person.
I have had many full blood count test done which all came back normal.
I have been tested for glandular fever 3 times and they all came back negative.
I have also been tested for thyroid problems twice but they never found anything.
Thankyou for taking the time to read this.
I appreciate any help you can provide and I will try and answer any questions you have.

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7 Replies:

  • Hi. You seem to have many symptoms for your age, and I can't say that I know exactly what's wrong. However, there are some tests that you can request or see if your docs have already checked into this stuff:1) get a tilt-table test. A condition called Postural Orthostatic Tachycardia Syndrome (POTS) that should be ruled in or out based on your 'black-outs'. A tilt table test will help.2) When your Mom saw you 'shaking'......did you loose control of your bowels or urine? I ask because I believe an EEC (not the same as an ecg) should be done to rule out seizures. If you did loose control of either, I really think the docs need to know.3)Because of your lymph swelling.......have your docs do an ANA test and a Sed Rate. These will identify some kind of auto-immune thing going on. You mention that many blood test have been run, but don't say exactly which ones. Docs aren't all the same, it would help us to help you if we not only know what has been tested exactly, but what the actual results were. Please be aware, however, that posting such on the open internet may not provide you with the rights to privacy you now have. I wish you the best and I'm sorry that I'm not more help. Hopefully some others on this site will have more ideas. In the meantime, please try to eat healthy foods and exercise as keeping your body as healthy as you can will help it fight off the infections.
    Harmonium 322 Replies Flag this Response
  • If you get a lot of repeated infections, I wonder if your doctors have looked at CVID or another autoimmune deficiency called IgA deficiency. Try here: http://www.stjude.org/stjude/v/index.jsp?vgnextoid=48dc061585f70110VgnVCM1000001e0215acRCRD&vgnextchannel=bc4fbfe82e118010VgnVCM1000000e2015acRCRD http://www.nlm.nih.gov/medlineplus/ency/article/001476.htm
    aquila 1263 Replies Flag this Response
  • Hi there, thanks for reading this. I really hope someone could help.I am female, 16 years old.I have been ill since October 2008. It all started with me being diagnosed with a throat infection. At this time my family and I were living in a damp house with mould growing (we have moved now). I was put on anitbiotics for my throat infection. As soon as I had finished my antibiotics I contracted another infection, this time I think it was an ear infections and was put on antibiotics again. Towards the end of October, just as I was finishing another course of antibiotics, I went on holiday to Scotland for a week with my parents and boyfriend. During this holiday I was extremely fatigued but didnt have any other symptoms. At the end of out holiday, urination was painful and I had to go frequently and there was a bit of blood in it. When I got back home I went back to the doctors and was given more antibiotics for a urinary tract infection. These antibiotics made me feel sick so I went back to the doctors and was given anti-sickness tablets. These tablets didn't work so again I went back to the doctors and was given different antibiotics which made my face swell slightly so my mum made me go back to the doctors again. I saw different doctor and he gave me another set of antibiotics which worked.As soon as I had finished these antibiotics, I went back to school and got another infection. The entire time I have been extremely fatigued. One day in November 2008, I was lying on the sofa and then got up to go into the kitchen. As soon as I made it into the kitchen i became very dizzy and started getting dots infront of my eyes. These dots multiplied and then I could'nt see anything. I had to hold onto the fridge as my knees were shaking which I had no control over and I could'nt see anything. This passed in a few minutes and I carried on. I carried on getting infection after infection and being pumped full of antibiotics.In January 2009, once we had moved out of the mouldy house I was still getting infections. I fell asleep on the sofa. Again, I stood up to go somewhere and my boyfriend stood up with me, I became very dizzy and the dots appeared infront of my eyes again. This time I wobbled and collapsed but my boyfriend caught me. I don't think I was shaking this time. I still carried on getting infections. Recently, I have started having palpitations, shortness of breath and cold sweats at night. Because of these palpitations, I had an ecg done at my doctors surgery which they said was fine. It would also be worth mentioning that I have had multiple blood test done which have all coem back normal.In March 2009, I stood up from the sofa to go in the shower. The dizziness and dots appeared again. This time they were worse than ever. My mum witnessed what happened and told me that I had stopped moving, fell back into the sofa, my eyes rolled back and I was shaking all over. (Shaking more like a fit than because I was cold). After this, my mum rushed me to hospital but I kept telling her I was fine. While I was in the hospital, there was another ecg done which came back fine and the doctor checked my blood and said it was normal. About a week ago, I spent a whole night throwing up and slept the entire next day annd night. Just after that I went to the doctors again and was told I have another throat infection and sinus infection. I am on antibiotics for that now. My neck has become very stiff and painful and my glands are swollen everywhere. I was told that my stiff and painful neck, painful ears and jaw are because of my swollen galnds. It would also be worth mentioning that I am pale all the time and have quite a high temperature. I have had many recurrent sinus infections during this time and my sex drive has become pretty much none existant.Also, I am very very emotional. I cry over everything now and my temper has gone crazy which is very strange because I used to be a very very calm and happy person. I have had many full blood count test done which all came back normal.I have been tested for glandular fever 3 times and they all came back negative. I have also been tested for thyroid problems twice but they never found anything.Thankyou for taking the time to read this.I appreciate any help you can provide and I will try and answer any questions you have.Hi rokie,You have had FAR too many recurrent infections in the area of your head (throat, sinus, ear, etc). I don't want to appear an alarmist but I think it's very possible that you've developed bacterial meningitis as a result of these repeated head-located bacterial infections that have never completely resolved.Your symptoms that you've described are consistent with bacterial meningitis, particularly the recent high fevers (how high?) and the neck pain/stiffness that you are having.One of the classic diagnostic signs of meningitis is what is called nuchal rigidity. This is the inability to bend your head down and touch your chin to your upper chest because the muscles in the back of your neck are too rigid. Please try this yourself and if you indeed have nuchal rigidity have your Mom take you back to the hospital Emergency Department NOW and please relay ALL of your symptoms to the ED doc just as you have here. (Printing out this page and bring it with you would be an excellent way not to miss anything.)Don't delay on this, rokie. I hope that I'm wrong but I honestly think you're a pretty sick girl at this point and in need of immediate appropriate treatment to prevent complications.Please keep us apprised of your situation.Best regards,John
    JonMac 165 Replies Flag this Response
  • Hi Thanks for all the replies.Harmonium, when I had the black out I didn't loose control of my bladder or bowels. But I will mention the tests to my doctor as I havent been tested for any of those things.The blood tests have only been for:- glandular fever (x3)- full blood count (x5)- thyroid (x2)- liver and kidney function (x1)all these tests have come back normal. I forgot to add in my orginal post that i have very frequent nose bleeds which started about 6 months ago along with everything else. I often get a ringing in my left ear which is accompanied by temporary deafness (left ear only though).I have also lost my appetite and find eating things difficult as unless I really really want to eat it, i feel sick.I have also lost quite a bit of weight, about 24 pounds. Hope this helps.Thanks for reading.
    Anonymous 42789 Replies Flag this Response
  • Oh and also, when I look at things they seem to move. For example when I was in hospital after the last blackout/seizure, I was lying on the bed and looking up at a vent in the ceiling which to me, seemed to be swirling. Walls move, my entire vision spins for a few seconds completely randomly and then stops. I keep dropping things and tripping over things as well. Please if anyone has any more suggestions, no matter what they are, please just post them. Anything will help.Thanks
    Anonymous 42789 Replies Flag this Response
  • Hi, I was diagnosed with Crohn's disease last year and am now researching the effects of Antibiotics on wellbeing. But it sounds like you are sicker than I am so thought I could help-My feelings are that anyone who has antibiotics to resolve a specific problem is at risk from a general reduction in health. This is due to the antibiotics destruction of the micro-organisms in the digestive tract (so-called 'good' bacteria). I think this loss of friendly bacteria can interfere with absorbtion of nutrients -which then leads to health issues unrelated to the original problem. I can't prove it, but also think that anti-biotics could cause permanent damage to the gut which can cause other diseases.Since you have been taking anti-Bs for so long, and so many different types, I imagine your 'good' bacteria are completely absent and you are suffering many secondary illnesses as a result. Any or all of the symptoms you describe could be caused by problems absorbing nutrients due to the lack of good bacteria. Think of it like holes in the petrol tank of a car. However you are young so a) you have time on your side and b) your immune system will be good at recovering - provided it is given time to do so.My advice is therefore to -1. Avoid any further anti-biotics - unless not taking them would be life-threatening. (finish any course you are on now per your doctors instructions). 2. Spend as much money and time as you can afford researching and feeding yourself with the best natural food products - stuff that you can digest and like. Pay attention to how you react to each meal - keep a diary. Get help from friends and family to buy the right food.3. Buy supplements if you can afford them - only buy recognised vitamins and minerals, and only in RDA amounts (not high doses), and don't waste your money on 'miracle/mystery' stuff like ginseng/Q10. Treat this as your no.1 priority. If you eat junk, you will feel crap!4. It sounds crazy, but 'think healthy'. Don't dwell on how sick you are - imagine a time in the future when you are really well... and you will get there. Some of your symptoms might be psychosomatic - i.e. your low spirits might be causing some of the feelings, and you might be hyper-tuned to any new symptom. The brain is very powerful.It might take a year or more for you to recover, which sounds like a long time, but you will make it. Good luck!
    Anonymous 42789 Replies Flag this Response
  • Hi there, thanks for reading this. I really hope someone could help.I am female, 16 years old.I have been ill since October 2008. It all started with me being diagnosed with a throat infection. At this time my family and I were living in a damp house with mould growing (we have moved now). I was put on anitbiotics for my throat infection. As soon as I had finished my antibiotics I contracted another infection, this time I think it was an ear infections and was put on antibiotics again. Towards the end of October, just as I was finishing another course of antibiotics, I went on holiday to Scotland for a week with my parents and boyfriend. During this holiday I was extremely fatigued but didnt have any other symptoms. At the end of out holiday, urination was painful and I had to go frequently and there was a bit of blood in it. When I got back home I went back to the doctors and was given more antibiotics for a urinary tract infection. These antibiotics made me feel sick so I went back to the doctors and was given anti-sickness tablets. These tablets didn't work so again I went back to the doctors and was given different antibiotics which made my face swell slightly so my mum made me go back to the doctors again. I saw different doctor and he gave me another set of antibiotics which worked.As soon as I had finished these antibiotics, I went back to school and got another infection. The entire time I have been extremely fatigued. One day in November 2008, I was lying on the sofa and then got up to go into the kitchen. As soon as I made it into the kitchen i became very dizzy and started getting dots infront of my eyes. These dots multiplied and then I could'nt see anything. I had to hold onto the fridge as my knees were shaking which I had no control over and I could'nt see anything. This passed in a few minutes and I carried on. I carried on getting infection after infection and being pumped full of antibiotics.In January 2009, once we had moved out of the mouldy house I was still getting infections. I fell asleep on the sofa. Again, I stood up to go somewhere and my boyfriend stood up with me, I became very dizzy and the dots appeared infront of my eyes again. This time I wobbled and collapsed but my boyfriend caught me. I don't think I was shaking this time. I still carried on getting infections. Recently, I have started having palpitations, shortness of breath and cold sweats at night. Because of these palpitations, I had an ecg done at my doctors surgery which they said was fine. It would also be worth mentioning that I have had multiple blood test done which have all coem back normal.In March 2009, I stood up from the sofa to go in the shower. The dizziness and dots appeared again. This time they were worse than ever. My mum witnessed what happened and told me that I had stopped moving, fell back into the sofa, my eyes rolled back and I was shaking all over. (Shaking more like a fit than because I was cold). After this, my mum rushed me to hospital but I kept telling her I was fine. While I was in the hospital, there was another ecg done which came back fine and the doctor checked my blood and said it was normal. About a week ago, I spent a whole night throwing up and slept the entire next day annd night. Just after that I went to the doctors again and was told I have another throat infection and sinus infection. I am on antibiotics for that now. My neck has become very stiff and painful and my glands are swollen everywhere. I was told that my stiff and painful neck, painful ears and jaw are because of my swollen galnds. It would also be worth mentioning that I am pale all the time and have quite a high temperature. I have had many recurrent sinus infections during this time and my sex drive has become pretty much none existant.Also, I am very very emotional. I cry over everything now and my temper has gone crazy which is very strange because I used to be a very very calm and happy person. I have had many full blood count test done which all came back normal.I have been tested for glandular fever 3 times and they all came back negative. I have also been tested for thyroid problems twice but they never found anything.Thankyou for taking the time to read this.I appreciate any help you can provide and I will try and answer any questions you have.hi i experienced practically all the same problems u have and more, i lived in a moldy house, taken me just over a year and now im back to normal, stayed away from medicines from gp as i had sensitivities from mold my baby was worst affected but were nearly there now took homeopathic medicines such as chorrella, manuka honey and plantago 4 my ear infections, and as much sun as i can get, when you moved house u must make sure u have a good humidity 30 to 60 but ideally u should ensure it is below thirty so mold cant grow, u can purchase a digital temp and humidity reader for under 10 pounds online, i suffered all the symptoms u had i moved to a 7 year old house away from the sea were humidity was high, 6 miles away, i was so thin gp thought i had thyroid probs, bed would be soaking every night, think if me and my family aint moved would have been catastrofic, mold can alter ur dna and kill, takes time to flush it out of ur system, drink plenty of good water as well, remember gps will not talk about it either they dont like to be held to thier words in case of legal proceedings and there is limited research in britain, hope this helps u as i feel ur pain, takecare x
    Anonymous 42789 Replies
    • February 18, 2011
    • 05:43 PM
    • 0
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