Discussions By Condition: I cannot get a diagnosis.

PLEASE, PLEASE, PLEASE Help me!!

Posted In: I cannot get a diagnosis. 55 Replies
  • Posted By: star32
  • June 14, 2007
  • 01:39 PM

Hello everybody,

I have been reading this forum for some time now with interest and sincerely hope that one of you can shed some light on what ails me!

To cut a very long story short, I have been ill for years! Nothing concrete enough to say its this or that. I have seen a gastroenterologist - he said its IBS. I have had a colonoscopy, gastroscopy, laporoscopy - you name it, I've had it - eveything clear!

Main symptoms are as follows:
- crampy bloated stomach
- intermittent stabbing pains lower left (bowel area)
- haven't been able to fall pregnant in 10 years (don't use birth control!)
- increase in facial hair growth (luckily I'm blonde!)
- few days before cycle feel VERY ill - sort of out of myself so to speak
- easily irritated
- memory is shot! Have to write everything down
- no libido whatsoever
- lack of energy - don't even want to go shopping!
- head feels like cotton wool
- neck is ALWAYS sore - with burning sensations
- muscle cramps/twitches
- sore joints, especially knees (on bending) and my wrists
- extremely cold sensitive - hands/feet go numb
- tingling now and again all over body
- recurring sinus/flu/ear infections
- odd headaches (cluster headaches)

I have in the past had glandular fever, encephalitis etc. However, over the past month something has gone seriously haywire! All of a sudden I'm battling to get out of bed (no energy), having chills and then break out in a sweat. Nausea, dizziness pain in my breast bone and when I breath in deep....the list goes on and on! Went to a new doctor - deceided to try another GP and over the past month I have had tests for Lupus, Lyphoma, EBV, CMV etc. The initial CBC came back showing elevated leukocytes and lymphocytes. Then the doc ordered additional tests 2 weeks later (apparently this is how long it takes for the anti bodies for the EBV virus to show) and the tests came back positive for the EBV and CMV virus anti bodies but that it was from a past infection. The white blood cells and lymphocytes were higher still and now the eosonophils were also raised!

I went for another test (flow cytometry) and had to submit a "sample" to find any parasites! The blood tests are back but she's not phoning me until the other "sample" results come through which will probably be only in two weeks.....

PS - thyroid also tested - a little underactive but she reckons its depression....does depression make you physically ill? She also said the tests looked negative for lupus...only have one slightly swollen lymph gland (about a centimeter or so in my neck - which has been swollen for the past three years or more).

I'm seriously going out of my mind. :confused: ... can anyone, PLEASE :confused: , PLEASE help me......

Reply Flag this Discussion

55 Replies:

  • I would definitely go see an endocrinologist for further testing of underlying thyroid disorder. Thyroid function can cause or lead to every symptom you have mentioned. If your GP only ordered a TSH (thyroid stimulating hormone) it may not reveal the "whole picture". You might want to research HYPOTHYROIDISM on the internet. Any hair loss, weight gain, swelling of extremites, skin changes. These are some of the symptoms you may not think are important enough to mention. Good Luck.
    Anonymous 42789 Replies Flag this Response
  • THANK YOU for answering my post....I was rather at my wits end. Do you think that vitamins (i.e. Ginseng) could have a similar effect on the brain?
    star32 8 Replies Flag this Response
  • Hi, I am so sorry to tell you this and you could be neg, But you need to get a HIV test, I hope its not but you really need to look at that, Good Luck!
    Anonymous 42789 Replies Flag this Response
  • polycystic ovary?
    rad-skw 1605 Replies Flag this Response
  • Hi rad-skw, Thanks for the reply. No, initially they thought it was PCOS but the sonars show healthy ovaries - no cysts in sight..... in addition to that when I did see the Gynae he requested the ususal blood tests - showed normal EXCEPT that I don't seem to ovulate.....Confusing hey?!
    star32 8 Replies Flag this Response
  • Make your Dr. Check Lyme Disease. If he/she won't, find another. It has all these weird symptoms!Central Florida Research does a really good test. Others not so good. Maybe best to get to a doctor with an O.D. degree, trained to treat the whole person.
    Anonymous 42789 Replies Flag this Response
  • Your symptoms are similar to those of chronic fatigue syndromegoogle symptom checkersenter your symptoms into one of themthis will narrow the field and probably bring you to CFS/ME pagesPolycystic Ovarian Disease is prevelant in people with CFS as well. I have both.CFS is being related to vaccines in many waysgoogle CFS/vaccines. You will find a lot of information MC
    Anonymous 42789 Replies Flag this Response
  • Hi everyone that replied. My :) most sincere :) thanks to all of you foryour suggestions. I haven't heard of Lyme disease - nor have had it checked. I will look into this (although I'm not based in the USA so will have to hope that our doc's here know what I'm referring to). Sorry to sound dumb but what is an OD degree? With regards to the HIV test - I've been tested many (6) times for life insurance over the past 10 years but they have all been negative (thanks anyway). Just an update from the tests done, it is not lymphoma or any sort of cancer (phew!!). Still waiting for the parasite results to come back (yuk!)Doctor originally said it was CFS - I told her the symptoms didn't fit (I suppose then again symptoms aren't tailor made). She still insists that it is depression. The biggest thing that is bugging me at the moment is my head - no, its my BRAIN....I can't really explain it properly except to say that I get these feelings of dizzeness - comes and goes in waves. That is followed by the urge to throw up. The back of my neck is STILL painful and has a burning sensation. My thought patterns are becoming rather frightening (started to keep a sort of diary of all I think about) and I'm just a phone call away from calling the nut house to come and get me.....maybe it is all in my head.....my hands don't seem to wanna play along - making alot of spelling errors when typing (more than usual). I'm starting to give up.... Thanks again to all of you - I appreciate your help
    star32 8 Replies Flag this Response
  • Depression is well known to be linked to hypothyroidism. HOWEVER, it is most likely to be hypothyroidism causing the depression, if indeed you are depressed. Do you have a low body temperature? It sounds likely that you have a hormonal imbalance of some sort. PCOS (which you haven't got) would explain a lack of ovulation, but this is actually a symptom of a hormonal imbalance and not a cause. I believe this is down to a deficiency in Follicle Stimulating Hormone levels. Ignore it and you might well end up with PCOS. The likelihood of Lyme Disease will be down to where and how you live. It might explain a lot of your symptoms, but if environmental factors make this highly improbable then it is just a red herring which might distract from identifying the real cause. I have to say that a lot of your symptoms sound typical of ME/ CFS. However, the only way to identify this is to rule out other causes. As an earlier poster suggested, an endocrinologist should be a first stop (hormonal balances are highly complicated and it is unreasonable to expect a GP to have an in-depth knowledge of these). Finally, if you convince yourself it is all in your head (especially if you say this to your doctor), the chances are you can look forward to a life of ill health!
    Anonymous 42789 Replies Flag this Response
  • Hello Kenn & thanks for your post. Yes, acutally I do have a low body temp and my hands & feets are ALWAYS cold. Regarding Lyme Disease, I live in the city and haven't been on holiday since December 2005 which is the only place I could've been bitten by a tick. I do have dogs but they are not allowed indoors and also sleep outside - so I do tend to agree that it may be a red herring.I'm going to try and find an endocrinologist to help me - although they are very few and far between in Johannesburg from what I can tell. I know it seems stupid to say that its in my head but you reach a point (when you've used up all the medical aid) and tried everything that you loose hope trying to "validate" how you feel with a "name"..... also doesn't help when the support is not there from the people you call your support structure......they are more inclined to go with hypochondria or the "men in white coats!" rather. Thanks again....:o
    star32 8 Replies Flag this Response
  • Low body temperature is associated with both hypothyroidism and CFS/ ME (and other things). The reason that I asked was that it might make you more susceptible to fungal infections (e.g. candida). I doubt this is the sole cause of your problems, but it might explain your frequent ear and sinus infections.
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • PS I think that the Medical Centre at the University of Witwatersrand might have an interest in endocrinology.
    Anonymous 42789 Replies Flag this Response
  • I think you are being piosoned by refined and processed sugar.switch to only natural sugars like honey,molasses,sorghum.refined and processed sugar is pure poison to many people.switch to natural sugars and you will get better
    Anonymous 42789 Replies Flag this Response
  • Kenn - thanks. Managed to find an endocrinologist in JHB - seems that there are a handful or so! Got an appointment next week so I will let you know. Thanks again for your help
    star32 8 Replies Flag this Response
  • Hello everybody, I have been reading this forum for some time now with interest and sincerely hope that one of you can shed some light on what ails me! To cut a very long story short, I have been ill for years! Nothing concrete enough to say its this or that. I have seen a gastroenterologist - he said its IBS. I have had a colonoscopy, gastroscopy, laporoscopy - you name it, I've had it - eveything clear! Main symptoms are as follows:- crampy bloated stomach- intermittent stabbing pains lower left (bowel area)- haven't been able to fall pregnant in 10 years (don't use birth control!)- increase in facial hair growth (luckily I'm blonde!)- few days before cycle feel VERY ill - sort of out of myself so to speak- easily irritated- memory is shot! Have to write everything down - no libido whatsoever- lack of energy - don't even want to go shopping!- head feels like cotton wool- neck is ALWAYS sore - with burning sensations - muscle cramps/twitches- sore joints, especially knees (on bending) and my wrists- extremely cold sensitive - hands/feet go numb- tingling now and again all over body- recurring sinus/flu/ear infections- odd headaches (cluster headaches) I have in the past had glandular fever, encephalitis etc. However, over the past month something has gone seriously haywire! All of a sudden I'm battling to get out of bed (no energy), having chills and then break out in a sweat. Nausea, dizziness pain in my breast bone and when I breath in deep....the list goes on and on! Went to a new doctor - deceided to try another GP and over the past month I have had tests for Lupus, Lyphoma, EBV, CMV etc. The initial CBC came back showing elevated leukocytes and lymphocytes. Then the doc ordered additional tests 2 weeks later (apparently this is how long it takes for the anti bodies for the EBV virus to show) and the tests came back positive for the EBV and CMV virus anti bodies but that it was from a past infection. The white blood cells and lymphocytes were higher still and now the eosonophils were also raised! I went for another test (flow cytometry) and had to submit a "sample" to find any parasites! The blood tests are back but she's not phoning me until the other "sample" results come through which will probably be only in two weeks..... PS - thyroid also tested - a little underactive but she reckons its depression....does depression make you physically ill? She also said the tests looked negative for lupus...only have one slightly swollen lymph gland (about a centimeter or so in my neck - which has been swollen for the past three years or more). I'm seriously going out of my mind. :confused: ... can anyone, PLEASE :confused: , PLEASE help me......Hello. We have a history of celiac disease (wheat/oats/barley/rye) intolerance in our family. The symptoms you have stated are very similar to what I was experiencing when I was diagnosed. 1 in 130 people actually have celiac disease (undiagnosed by far). These possibly could be symptoms of that and malabsorbtion. I would check with a gastroenterologist or MD for testing. I hope you feel better soon!Lisa
    Anonymous 42789 Replies Flag this Response
  • No guarantee, but here is a suggestion to possibly help some. With all those ear infections have you been taking antibiotics? I starting having ear infections regularly and the doctor always gave me antibiotics for them. After several occurrences I began to feel really low on energy, and I was sick of the infections repeating. So, I stopped taking the antibiotics and started using rubbing alcohol in my ears whenever an infection would start. Morning, noon, and night I put a few drops in each ear for a week or so until I could tell the infection was gone. The change was not immediate, but after several months to a year I began having energy again. Somehow those antibiotics (and possibly a combination of that with other things like having the actual infections) were draining me.Hope this helps.
    Anonymous 42789 Replies Flag this Response
  • Lyme disease can take years and years to show up. Get good accurate information about it at www.canlyme.com. Your symptoms are a perfect match.
    Anonymous 42789 Replies Flag this Response
  • What medications are you currently taking, and have you taken or stopped any medications over the past year? Please don't let a doc dismiss your symptoms as just "depression" - they want an easy out and just prescribe SSRI's...you have more going on and sounds like you have hormonal issues and and impaired immune system.. Are there any holistic practitioners in S. Africa? I would try to find one who may be able to look at the whole picture instead of just going to specialist after specialist... Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Good morning everyone,Thanks for all your posts. Now to answer all your questions: To UNREGISTERED posted @ 2:35pmI don't eat sugar besides those that are naturally found in food. Don't take sugar or milk in my coffee either....but thanks for the suggestion. :rolleyes: To LISA posted @ 4:33pmThank you for your thoughts and well wishes. I have already seen a gastroenterologist. His exact words to me were, "you are too young for cancer and since you aren't losing weight or passing blood in the stool I doubt whether you have any serious GI problems" take these pills (AZOR) as you have IBS.......I don't know if I want to be treated like that again!!! However, I will look it up on the internet and perhaps take it further after seeing the endocrinologist. Thanks :) To UNREGISTERED posted @ 8:23pmThanks for the suggestion about the antibiotics. Yes, I think you are right about them doing more harm than good! Funny thing is when I went to the ENT complaining that I had another ear infection he told me there was nothing wrong with my ears! Said it was stress and muscle spasm in my neck that was giving me earache and prescribed ZANAX - didn't take it coz he wasted my time and my money! Thanks for your thoughts. To UNREGISTERED posted @ 1:31amThank you for the link - I'll go and have a look at it now. To DOM posted @ 2:37amThe only medications I have been taking are vitamins. I have acutally stopped taking anything as of Monday to see if I have unwittingly being taking something that is making me ill - or perhaps taking TOO many supplements. I am at the point that I will get to the bottom of this and will not let anyone tell me that I'm depressed....I know I'm not. I don't know whether we have any holistic practitioners - I know that there are Internal medical doctors....don't know if that is the same thing. I'm hoping that the endocrinologist will be in a better position to pick up what is really the problem....thanks for your post (appreciate it). :D Thanks again all for your posts
    star32 8 Replies Flag this Response
  • Pituary problems my dear.. Glad you are seeing an endocrinologist!Keep us posted!
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.