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Undiagnosed circle of hell.

  • 05-08-2010 8:13pm
    #1
    Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    Alright,

    I've been ill on and off for the past 4 years. Up until now, I tolerated it. Symptoms are flu-like, for months on end. I've been burning up with a fever, sneezing, feeling generally achy and painy. This latest patch has been terrible. I've missed 2 or 3 weeks of work, and I'm after being warned for being out ill twice at this point.

    I've tried everything in terms of my diet, just to weed out any allergies - by going on a fruit, veg & water detox for 2 weeks - but I still came down with the same symptoms.

    I've had every kind of blood test taken, all came back positive. I'm currently waiting on the results of a Lyme Disease blood test, but beyond that - my GP has absolutely no idea what to do with me.

    He referred me to a local gastrologist, who sent him a letter back stating that he can't treat me as it doesn't sound like something gastrology related?

    I had re-occuring pains in my kidney areas, but I had a scan on them which came back fine. The kidney pain isn't so bad right now - but about 3 months ago it was really sore.

    I've been pretty much trying to tough it out, but it's gone too far now and has kicked the crap out of me. I'm suppose to start a masters in a few weeks, and I'm seriously considering putting it off.

    I just don't know what to do - I don't know who to go to. I've taken 30 odd blood tests over the past 40 years, had x-rays and ultrasounds. I generally feel like crap for months on end, with periods of no longer than 1 or 2 days in between where I feel semi-normal. I put on a happy face - but inside, I feel like breaking everything in sight, because I'm 27 and this isn't how life should be.

    I've no idea what to do - No idea who to see? I don't have much money, but I need to see someone who'll test me for everything possible, and see it through. Someone who actually cares about their patient. When my doctor is lost for ideas, you know I'm really screwed!

    I feel it is something viral, but what the hell do I know? Could somebody point me in the right direction - as if this last test comes back ok - I have nowhere else to go.

    Sorry if this all sounds like a whine, but meh.


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Comments

  • Registered Users Posts: 11 leopardlady


    So sorry youre feelin so bad. Have you been tested for ME? Thats Myalgic Encephalomyelitis. Maybe you should Google ME to see if the symptoms are familiar to you. You should ask your doc if youve been tested. Take care & good luck, hope you get well soon.


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    No, it isn't ME. I don't have fatigue at all. I feel "virus'y" if I could explain it best.

    Does anyone know a doctor that specialists in autoimmune disorders? Everyone I've seen is just not educated enough on these issues to diagnose me.


  • Registered Users Posts: 32,634 ✭✭✭✭Graces7


    dlofnep wrote: »
    No, it isn't ME. I don't have fatigue at all. I feel "virus'y" if I could explain it best.

    Does anyone know a doctor that specialists in autoimmune disorders? Everyone I've seen is just not educated enough on these issues to diagnose me.

    Could be eg MCS; Muliple Chemical Allergy; I have this and get ill ( I do have M.E also but this is different) if around perfumes and cleaning stuff. So I use no such things here at home; Mass is a nightmare as so many wear heavy perfume etc.


  • Registered Users Posts: 112 ✭✭easynote


    Try taking high dosages of vitamin C and avoid anything that could be the slightest bit mouldy (i.e. bread in plastic bags and grain based food overall) also clean out your place where you live and work as dust in the air could be a contributing factor. Have you had your liver checked up?

    Also take vitamin b complex. Go to your health food store and get a good brand.


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    My vitimin intake is fine. My room is clean. I only eat fresh foods / meat - I'm intolerant to gluten in anycase. And yes, I've had everything checked. None of the above are contributing factors. I strongly suspect it's an autoimmune disorder.


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  • Registered Users Posts: 54 ✭✭ejvilla


    Do you smoke?

    Are you overweight? How much exercise do you get?


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    I don't smoke. I'm not overweight. I get sufficient exercise. Trust me, all of the obvious causes have been addressed.


  • Registered Users Posts: 905 ✭✭✭StompToWork


    Sounds like a job for House MD!!

    Regarding M.E., I don't believe fatigue is necessarily a major symptom. I have a vague recollection of reading somewhere that that you can have ME without the whole fatigue thing.


  • Registered Users Posts: 3,375 ✭✭✭kmick


    One thing I would do is go see the Accupuncturist in the Prioiry Clinic in Stillorgan. She is excellent and has got good results helping friends of mine get pregnant, helping one friend with an unidentified virus and for my wife with hot sweats at night. I have never been but they all rave. I can get a name and number if you pm me.


  • Closed Accounts Posts: 15,914 ✭✭✭✭tbh


    dlofnep wrote: »

    I've had every kind of blood test taken, all came back positive. I'm currently waiting on the results of a Lyme Disease blood test, but beyond that - my GP has absolutely no idea what to do with me.

    any word back on that?
    Sorry if this all sounds like a whine, but meh.

    it's par for the course with this forum, don't worry about it.


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  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    Yeah, Lyme disease test came back fine. So did a Lupus test also a week later. I've booked an appointment with a local alternative health specialist, who's supposed to be very good. It's not until the middle of October though - he's booked out until then.

    If that fails, I'm going to get tested for heavy metal toxicity - as I my health went downhill since fillings. It may or may not be a contributing factor - but at this point, all I can do is eliminate absolutely everything that could be causing it.


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    Sounds like a job for House MD!!

    Indeed! ;)
    Regarding M.E., I don't believe fatigue is necessarily a major symptom. I have a vague recollection of reading somewhere that that you can have ME without the whole fatigue thing.

    I don't believe it's ME. Fatigue is indeed one of the major symptoms of it (Otherwise known as Chronic Fatigue Syndrome). And I think Doctors are way to quick to tell people that they have it. I'm not interested in passing the buck, I'm interested in identifying the root cause of my problem. It is certainly in my view, an autoimmune disorder. Although, I've yet to be diagnosed - all I can do is be persistent, and hope I can resolve it.


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    kmick wrote: »
    One thing I would do is go see the Accupuncturist in the Prioiry Clinic in Stillorgan. She is excellent and has got good results helping friends of mine get pregnant, helping one friend with an unidentified virus and for my wife with hot sweats at night. I have never been but they all rave. I can get a name and number if you pm me.

    Sorry, I have no interest in acupuncture. I had some done over a year ago, and there were no results at all. Cash is tight, and I'm trying to use it for what I feel will best remedy my problems. Thanks for the offer though :)


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    Oh, I ended up deferring my masters in the end - Wasn't very happy about it, but my health is more important. I've been out of work sick the past 2 or 3 weeks as it's just become too much. My next worry now is losing my job, and being unable to receive disability allowance because I have yet to be diagnosed.


  • Registered Users Posts: 54 ✭✭ejvilla


    I've written and rewritten several replies now dlofnep mostly because I think I can empathise. I have gone through a similar process of trying and failing to get a diagnosis for a similar, though not identical, set of symptoms.

    No amount of "well maybe you should... have you considered... " is going to make you feel better so here's my no bs approach, if you've tried/considered these already then sorry for wasting your time! :)

    1) Try another GP. Like any other person, GPs can get set in their ways and fail to broaden their horizons or increase their knowledgebase. It's unlikely that you are the first person in Ireland to experience what you're experiencing so another GP will probably have encountered it at some point.

    2) Depression. I'm not a medical professional or a mental health worker but the possibility occurred to me whilst reading your OP. Consider exploring the possibility if you have not.

    3) Gluten. You mentioned an intolerance. This sets the alarm bells ringing for me, probably because I have an allergy and it's not nice. How do you manage your intolerance? Are you taking antihistamines and which ones? You mentioned that you have altered your diet to accomodate this intolerance, how? What are you excluding?

    You know as well as I do that gluten is in everything tasty but it's also a major part of that which would be considered a 'balanced' diet. Most of our major carb sources are, for want of a better term, gluten-full. How are you managing that potential deficit? When did you start managing it?

    I ask because some of the side effects of low-carb diets correlate with the symptoms you describe.

    Do you have any other allergies? Hayfever?


  • Registered Users Posts: 637 ✭✭✭Wisco


    yes, the circle of hell....sounds like what a friend when through recently (not your symptoms, just her frustration with not getting a diagnosis). Hassle your GP until he/she gives you a referral to a specialist and force your views of the possiblility of autoimmune disease on them. My friend didn't get the treatment she needed until she and her family had a fight with the doctors to try steriods (part of her problem is also autoimmune) even though they didn't want to give them.
    So if you feel strongly about something, harass the doctor until you get what you want. And keep harassing until you're happy! She really had to fight, a lot, to get what she needed.
    Good luck.


  • Registered Users Posts: 7,692 ✭✭✭Dublin_Gunner


    I'm sorry to hear about all of your trouble dlofnep.

    This may be a long shot, but as you've covered most bases at this stage, is there any chance it may be a parasitic infection of some description?


  • Registered Users Posts: 20 Jeweliette


    Hi OP sorry to hear you're going through this.

    If I was you I would not completely discount the possibility of ME/CFS. The name CFS is very much a misnomer and there is a wide media perception that having the condition entails wandering around going "gosh I'm so tired" all the time. The truth is that you're actually feeling very sick. "Feeling virally" as you say sums the experience up for a lot of people. The tiredness you get with the condition is like the wiped out feeling that is usually part of being "virally".The name Chronic Fatigue Syndrome causes a lot of annoyance in people who are diagnosed with it because the term "chronic fatigue" doesn't come anywhere near describing it.

    Among the predominant symptoms are swollen lymph nodes, raised temperature, muscle and joint pain, headaches, stomach upset, difficulty concentrating ,sweating and shivers, so it's really not unlike having a persistent infection for lots of people who are mild to moderately affected. Infact this week research done in the UK has found evidence of the body battling a permanent infection in children with the condition.

    I think you should continue going to your doctor and having all the investigations and tests that you can in the hope of finding what's wrong. Also if you recognize the above description of illness then read up a bit on ME/CFS. Early diagnosis of the condition and good management at an early stage can help you're long term prognosis a lot if you have ME/CFS. It's mostly common sense stuff like resting when you are feeling bad as you would with any virus and then not pushing yourself to a point that brings on symptoms when are feeling a bit better.


  • Registered Users Posts: 112 ✭✭easynote


    Hayfever?

    Edit: saw someone else had already mentioned it.


  • Registered Users Posts: 651 ✭✭✭kangaroo


    Regarding M.E., I don't believe fatigue is necessarily a major symptom. I have a vague recollection of reading somewhere that that you can have ME without the whole fatigue thing.
    Yes, there are all sorts of debates in the ME/CFS/PVFS world about the name. Fatigue is sometimes called the F-word. People don't like it. I didn't have fatigue for the first four years of my illness when I was more mildly affected (but I would feel poisoned later or the next day if I exerted myself a lot e.g. tried to play sport - a bit of swimming or cycling was ok for a while).

    Another name for ME is Post-Viral Fatigue Syndrome Or Post-infectious fatigue syndrome as it's a syndrome that commonly comes on after an infection (often virus but sometimes bacteria or other pathogen).

    People do feel virus-y with this condition including with CFS. Look at many/most descriptions and "'flu-like symptoms" will be mentioned. Not saying this (ME/CFS/PVFS) is what any individual person has but just correcting any suggestion that fatigue is the main symptom for everyone (it's not - research shows it) and some people wouldn't have (what might be called) normal fatigue (although with exertion can feel exhausted/poisoned, although this may be delayed 24-48 hours).

    Lots of doctors are not on the look out for it. And can tell patients stupid reasons why they don't have it. My GP at one stage thought I was too mild to have it and then at a later stage thought I was too ill to have it. There is a spectrum of illness from fairly mild (work full-time, often with difficulty) to house- or bed-bound. Indeed, I looked back and I had read two descriptions of the illness in the five years before I was diagnosed and they didn't resonate with me as I was less ill, with fewer of the symptoms (have dozens of symptoms now). Everything became a lot clearer when I became severely affected.

    But with any suspected ME case, it's good to get other things ruled out. In England, people aren't as well tested esp. in recent years - often dumped down to the local fatigue clinic after minimal tests so there are probably more missed cases of non-ME there.

    BTW, I'm gluten intolerant. It showed up in a urine test sent to a autism unit in Sunderland (IAG?) - but I don't have coeliac disease according to the blood test. I know lots of people with ME/CFS who are gluten intolerant. But I think people with some other conditions are also e.g. I recall a study a few years ago that people with (Rheumatoid?) arthritis improved on a gluten free diet.


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  • Registered Users Posts: 10,892 ✭✭✭✭Spook_ie


    I wonder have you been tested for Coeliac disease too ??? long story short our 11 yr old was finally diagnosed in March of this year having suffered many many symptoms over the last few years. He was not tested before then as he did not 'fit' into the normal coeliac disease symptoms in children ie stunted growth and poor weight gain. He had a number of virus's and bacterial infections including at one point meningitis - some days he had leg pains, another day it might be his jaw, then he might be clammy etc etc, at one point it was suggested by a hospital consultant that it was stress, but thank god our GP stuck with us and after another 'virus' she just said I think we'll test for Coeliac disease, lo and behold his antibody levels were through the roof and he then had a bowel biopsy in Crumlin and this confirmed the diagnosis. He is on the diet since the 9th March and has improved alot, his aches and pains were gone within a month. It is an autoimmune diease and this could well be your problem.

    Good luck


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    Hi there,

    I have been on a gluten free diet for 2 years - So I doubt it's attributed to Coeliac. While I wasn't tested beyond a blood test for Coeliac - I did get an allergy test which confirmed I was intolerant to gluten - which they stated could be "non-coeliac gluten intolerant".

    In anycase, I haven't digested any gluten in 2 years - So It's doubtful it's causing my present symptoms.


  • Registered Users Posts: 6,645 ✭✭✭IzzyWizzy


    OP, I'm just curious about why you're so sure it's an autoimmune disorder? You could be right, but what makes you think so? Have you actually looked into ME with the doctor? Your symptoms sound exactly like a friend of mine who has it, even down to the kidney pain. She doesn't feel tired as much as generally unwell, achey and fluey.


  • Closed Accounts Posts: 8,073 ✭✭✭sam34


    ok, could people ease up on throwing potential diagnoses out there please.


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    Thanks Sam :)

    I'm not looking for a diagnosis. I'm looking for someone to point me in the right direction for someone who deals with these kind of issues, and won't fob me off. Thank you for all your suggestions, but I've looking into all avenues with my GP and I'm none the wiser.


  • Registered Users Posts: 6,645 ✭✭✭IzzyWizzy


    dlofnep wrote: »
    Thanks Sam :)

    I'm not looking for a diagnosis. I'm looking for someone to point me in the right direction for someone who deals with these kind of issues, and won't fob me off. Thank you for all your suggestions, but I've looking into all avenues with my GP and I'm none the wiser.

    No-one can know what the right direction is because we don't know what's wrong with you and I'm not sure how people can know what to advise without making suggestions and asking questions, but I'm new to this forum. 'These kind of issues' could be any number of things. The only advice I have is not to write off potential problems because you don't think you have them and not to convince yourself you have or don't have X, Y or Z if you're not a doctor. I mean, absolutely do look into autoimmune disorders if you think that's your issue (I don't know of a specialist in this field) and if you think you may have a particular disorder, print off the relevant info and take it to the doctor, explain how it relates to your symptoms and the investigations you think you should have. However, I'd remain open minded to other possibilities as well.

    I believe I advised you on another thread to consider your mental health and how stress may be affecting your system and I stand by that. I apologise if this is considered 'throwing out a diagnosis' - obviously I have no idea if this is a factor or not because I don't know you - but it's surely worth exploring every single avenue. Stress/depression/anxiety can hugely affect your physical health. It's not a case of your problems being in your mind, it's a case of your mind causing some very real physical problems. I would recommend that you do look into that as well as continuing the medical tests. I do understand how frustrating it is but I think it's important not to completely discount any possibility at this stage, as difficult as it might be when you think you know what's wrong. Just keep battling until you start to get any kind of answer. Best of luck.


  • Closed Accounts Posts: 728 ✭✭✭joebucks


    dlofnep wrote: »
    I'm not looking for a diagnosis. I'm looking for someone to point me in the right direction for someone who deals with these kind of issues, and won't fob me off. Thank you for all your suggestions, but I've looking into all avenues with my GP and I'm none the wiser.

    Howya dlofnep,

    Sorry to hear what you're going through. I have been going through a similar circle of hell myself since 2006. Similar symptoms, pain in kidneys, stomach problems, feeling fluey and rundown. I have had many different tests and been to many different consultants and all the results have been inconclusive. The usual stuff is thrown around M.E/CFS/PVFS and even PTSD.

    I have tried an array of alternative medicines and most have been ineffective and some even harmful to my mental health as practitioners would try to diagnose the problem and tell me they are able to fix it, then 6 months and €1000 later no change.

    I would be very interested to hear how you come along and I hope you can find some respite in the near future.
    I will keep you posted if I come across any advancements myself.
    In the meantime, take 'er handy.


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    Hi Joe - A problem shared, is a problem halved. I have a few things lined up. My GP has organised a visit to an infectious disease specialist. I've organised a visit to a local alternative health expert, and I'm also getting my mercury fillings removed and getting tested (and purified) for heavy metal toxicity as my problems began shortly after getting fillings. i'm just trying to be persistant and try all avenues. At least then - I'll either be better, or at least clear in my mind that I've tried everything possible.


  • Closed Accounts Posts: 20,759 ✭✭✭✭dlofnep


    IzzyWizzy - My mental health is fine. I'm not stressed or depressed. The only thing annoying me is the feeling of being consistently ill. Other than that, I'm happy.


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  • Closed Accounts Posts: 728 ✭✭✭joebucks


    dlofnep wrote: »
    Hi Joe - A problem shared, is a problem halved. I have a few things lined up. My GP has organised a visit to an infectious disease specialist. I've organised a visit to a local alternative health expert, and I'm also getting my mercury fillings removed and getting tested (and purified) for heavy metal toxicity as my problems began shortly after getting fillings. i'm just trying to be persistant and try all avenues. At least then - I'll either be better, or at least clear in my mind that I've tried everything possible.

    Yes indeed. The only option is to explore every avenue.

    I have read that heavy metal toxicity may be a cause of this type of illness but most resources I have found on this are advocating Chelation Therapy which is something I would personally avoid.

    How will you be tested for heavy metal toxicity? Hair sample? Is your GP able to arrange this for you?
    Will you have tests done first and then have fillings removed or are you going to have fillings removed regardless.
    I also had some dental work, root canal etc ,done a good few years ago but never really considered it as a source of my current ailments. Do you have any good resources where I could read up on this.

    Anyway best of luck with all your tests.


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