Discussions By Condition: I cannot get a diagnosis.

CFS? Autoimmune? Hypo? TB? Celiatic? IBS? What else????

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: Anonymous
  • June 7, 2008
  • 02:18 PM


I have always been on the lean and weak side right thru childhood till even now; but was extremely active in sports and curriculum.

I do tend to stretch myself at work; perhaps 60-80 hours every week with travel of 10-12 days over the last 8-10 years. Eating at odd hours and some times skipping meals to complete a task. Though have been managing to get about 6-9 hours of sleep every day though ith some amount of physical exercise thrown in on weekends.

Quite frankly have loved every moment...till now!! Perhaps paying the price....

All this changed!!

From the last 6-9 months; on few morning wake up a terrible fatigue and takes several moments to get up and motivate myself to reach work.

Dec '07 - had mild typhoid (1:80) and leptospirosis

April '08 - Mantoux showed positive & blood samples equivocal. Chest Xray - normal

All tests in the last 6 months have showed normal and met about 6 doctors who have asked to take a variety of vitamin supplements. At some point suggested anti-depressants and meet a shrink. Nothing against them; but i feel mentally strong and most often that aids me in pushing the fatigue feeling aside and get to work.

On meeting several doctors and reading online forums; a variety of possible syndromes have come to light, but none are conclusive.

Sorry for this long post; but after reading various forums; i realise that there are perhaps millions who are almost in similar situations and suffering from much longer periods than me. Even the rapid advancement of medical science seems so limited when i read these forums.

I just miss being 'old self' and hope that one day my symtoms will have a 'name' and medication / therapy would make me normal again. But, i know that i am not alone in this journey.

Someone pls help, my symptoms are below:


Fatigue or tiredness, all day, in morning, especially
Bowel motions alternating constipation/diarrhoea
Drowsiness
General body pain (especially shoulders, shin / calves and feet)
Stomach feels queasy and heavy.
Weight loss, up to 6 kgs in last 6 months
Mouth ulcers, one a time, inside of cheeks, no pain or bleeding
Mood swings
Don’t like too ‘cold’ or too ‘hot’ temperatures
Burning / Tightness on occasions in chest area
Back of head / neck hurts on occasions

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24 Replies:

  • anyone can suggest?
    Anonymous 42789 Replies Flag this Response
  • Been going through the same thing for ten years now...............................
    Anonymous 42789 Replies Flag this Response
  • Were you on a course of antibiotics while you were sick in 07?DOM
    acuann 3080 Replies Flag this Response
  • sniff: And what is your current status now?
    Anonymous 42789 Replies Flag this Response
  • Current status: Few Docs have given up, few are prescribing more tests. I am not taking any meds till we can get a diagnosis. Feel fatigued....but surviving cos i am a fighter!!!
    Anonymous 42789 Replies Flag this Response
  • Celiac disease. Get EMA and TtG testing, and also DQ2 and DQ8. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies Flag this Response
  • Thanks for replying. Currently, testing for Electrokyte / Cortisol levels, will await reports and then do Celiac
    Anonymous 42789 Replies Flag this Response
  • if you are still working 60-80 hrs per week.. i doubt very much that you could have CFS. CFS will usually make one have to cut out the normal things they do in life by at least half. It's quite extreme. A quarter of people with CFS cant work at all and have to be on disability.
    taniaaust1 2267 Replies Flag this Response
  • Tania: i am still doing about 40-60 hrs of physical work every week; i run a company and so mentally 'connected' all the time :) have actually cut down on loads of other things, tried yoga, but after 2 weeks, was feeling exhausted and had to stop. Got this funny chest pain too. Which has reduced, but on pressing, 'feel' its there.
    Anonymous 42789 Replies Flag this Response
  • All of these symptoms can be related to Chiari 1 Malformation!
    Anonymous 42789 Replies Flag this Response
  • Tania: i am still doing about 40-60 hrs of physical work every week; i run a company and so mentally 'connected' all the time :) have actually cut down on loads of other things, tried yoga, but after 2 weeks, was feeling exhausted and had to stop. Got this funny chest pain too. Which has reduced, but on pressing, 'feel' its there. Another thing about CFS is that CFS patients dont just physically exhaust..but they mentally exhaust too. It gives one "brain fog" concentration, comprehendation and memory problems in 95% of CFS cases. So it's doubtful you could have it too if you are still doing a job which takes a lot of "mental" energy. What CFS does to ones brain is quite bad eg i need to carry a voice activated recorder with me other wise i cant even park my car in a carpark and not loose it. It can be very much like having dementia. Most people dont understand the severity of CFS or the scale of it.
    taniaaust1 2267 Replies Flag this Response
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  • How do you diagnose CFS?
    Anonymous 42789 Replies Flag this Response
  • Report Update: Testosterone : 653 ng/dlSHBG : 32.3 nmo/LCortisol (Morning Sample) : 11/6/ug/dlACTH : 26.65 pg/ml Blood Urea Nitrogen : 8.2 mg/dlCreatinine : 0.7 mg/dl Electrolytes Sodium : 143 mmol/LPotassium : 4.90 mmol/LChloride : 106 mmol/LBicarbonate : 25 mmoll/L Let me know if any of this helps; apart from the other info submitted at start of forum
    Anonymous 42789 Replies Flag this Response
  • How do you diagnose CFS? They are still in the process of developing an actual test to diagnose CFS. (they are almost there now, they have only this year discovered 88 abnormal genes commonly found in this illness.. abnormal genes to do with the neuro, metabolics and immunological systems). Diagnoses currently is based on having a certain amount of certain symptoms to a certain degree and ruling out other illnesses which have same kind of symptoms. There are some scientific tests which can help to back up a CFS diagnoses eg common scientific abnormalities found in CFS which can be looked for and which MAY or may not be found eg in my own case i have evidence of a hypothalamic/pituatory/adrenal pathway dysfunction showing in by my abnormal BP, abnormal cortisol results, positive rombergs tests (this is a neuro test shows i have neuro dysfunction which is common in CFS), abnormal EEG (shows abnormal brain wave state which many with CFS have). Doctors thou unless they are specialists in CFS will run the wrong tests in trying to back up a CFS diagnoses using scienctific testing and not know what to go looking for. The stupid thing currently is that each country is currently using different diagnostic guidelines to diagnose CFS. The Canadian CFS diagnostic guidelines thou are the most commonly used worldwide... American CFS guideline isnt so strict..so some patients which wouldnt be diagnosed with CFS end up being diagnosed asz having it there (it allows some depression patients without CFS to end up with a CFS diagnoses)
    taniaaust1 2267 Replies Flag this Response
  • Print off your list and hand it to a Homeopathic doctor. I think she/he would have a positive outcome for you. $$$$
    Monsterlove 2921 Replies Flag this Response
  • You must have had some really bad water; be more careful in the future. You've had a couple of tough illnesses and it may take you a while to feel well again. You probably need to be seen by a cardiologist to determine what, if any, damage has been done to your heart. http://en.wikipedia.org/wiki/Leptospirosis and I don't think there is anything mild about typhoid but according to your doctors, you don't have it but it sounds more like you were exposed to it but didn't get a full case of it, along with your TB exposure:
    Monsterlove 2921 Replies Flag this Response
  • Thanks Monsterlove Did go a homeopath he/she put on medication for 3 months, did not make any large difference. Thats what the doc says on typhoid. Why do u suggest a cardiologist?
    Anonymous 42789 Replies Flag this Response
  • Check out CFS after leptospirosisJust reading up on a case ... there is research to back up the causal link between the 2..if that is what you are looking for .Sounds like you know its the whole cocktail together tho !
    bohemiancurtains 2 Replies
    • August 26, 2008
    • 02:02 AM
    • 0
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  • can you provide more details on the report. Can check with my doc. I am feeling much better now; thanks
    Anonymous 42789 Replies
    • August 26, 2008
    • 10:29 AM
    • 0
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  • HI . I can but not on the forum. In my experience its probably best to just treat the condition and let your doctor discount other causes.
    bohemiancurtains 2 Replies
    • August 26, 2008
    • 11:25 AM
    • 0
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