Ongoing Symptoms Without Diagnosis

fivespice on 24/01/2017 - 14:53

Hi all,

Preface: 27 year old male, prior to symptoms I was generally fit and healthy but was quite overweight and had poor diet around ages 19 to 22.

I won't get into the exact symptoms that I am/was experiencing unless somebody specifically wants to know.

In June 2015, I started to experience bizarre and vague symptoms that I had not previously experienced before. These symptoms affected multiple systems in my body (neurological, auditory, physical, visual etc.) and whilst these issues impacted me severely, I wouldn't describe my issues as debilitating.

I saw countless GP's, 2x ENT's, a neurologist, many blood-tests and had an MRI of the brain. The only thing that ever came back was a positive test for Epstein-Barr Virus (also known as Mono or Glandular Fever). Never got an official diagnosis and most doctors put my issues in the too-hard basket.

After approx 3-4 months, most of my symptoms subsided but some things were still lingering. I stopped pursuing the issue and visiting doctors.

December 2016: Started to experience strange gastrointestinal symptoms followed by many symptoms that I experienced previously in June of 2015.

So my questions are:
-Has anybody experienced something like this before and did you/they manage to get treatment?
-Where is the best place to go to see a doctor who will consider this as a whole-body issue rather than seeing an ENT/Gastroenterologist etc.
-I'm even considering some alternative medicine such as Acupuncture in the absence of adequate treatment through the normal medical channels. Is this a bad idea?
-Any other advice is appreciated.

Thanks everyone.

Health & Beauty

closed Comments

  • Wolfofwallstreet on 26/01/2017 - 11:54
    -1

    I think what you may have is Lime disease. Have a read about it as it mask itself and affects many internal organs. Have you travel oversea recently?

  • Jikx on 26/01/2017 - 12:22
    +6

    I find that all these suggestions and cures listed here very disturbing.. especially given fivespace hasn't actually listed what specific signs and symptoms he or she has had in any great detail.

    How are people giving advice when we don't even know what's going on??????

    So Fivespace, I WOULD indeed like to know exactly what symptoms you've had AND the timeline. Other test results of use would be: FBE, UEC, CRP, ANA, ANCA, ESR, CRP, LFT (if done, just say if there were normal or not).

    EBV is a really useless test, as nearly everyone is positive.

    :)

    • May4th on 26/01/2017 - 12:48

      because everyone has a medical degree on the net ;)

  • Kapinny on 26/01/2017 - 12:55

    good luck to you sir

  • Christop86 on 26/01/2017 - 13:20
    +2

    Use Nomie to track your symptoms.
    https://nomie.io/

    Pretty cool app. I use it to track all kinds of things and can look at things like - on days I smoke more I'm generally more stressed, but if I exercise it brings it down by about 20%.

    Maybe you'll find some kind of pattern. Good luck.

  • FittyFitty on 26/01/2017 - 14:48

    Think happy thoughts and get out more…

  • Dr Techno on 26/01/2017 - 17:22

    hidden stress can cause strange gastrointestinal symptoms. I've experienced it before.

  • [Deactivated] on 26/01/2017 - 17:55
    +2

    So my questions are:
    -Has anybody experienced something like this before

    Like what? o.O

  • Kempe on 26/01/2017 - 19:23

    Might be a bit of hypochondria involved here

  • fivespice on 26/01/2017 - 20:04
    +7

    Hi all, just to clarify, I never asked for a diagnosis. I was really looking for advice from people who may have dealt with health issues and did not receive answers through the normal medical channels. I have gotten some really good advice from people so far so I really appreciate that. Others that have claimed my issues are all in my head and related to anxiety/depression; you are entitled to your opinion and that's fine too.

    Since people have asked me what the symptoms are, I will try my best to explain what I have felt. Prior to symptoms I was regularly exercising and never experienced any of these things before. I have never had a history of anxiety or depression either:

    June 2015: Suddenly had tinnitus in left ear while watching TV. Felt as if air was being sucked out of my left ear for a period of 15 seconds and was stuck with constant ringing. I actually didn't think much of it and continued on with my life normally. A week later started feeling very strange. Symptoms included dizziness, fatigue, tired legs and arms, occasional tingling hands/feet, brain fog, poor concentration, random muscle spasms among other things. My ears/cheek area also started to click when I talk (sounds like there is something sticky in there almost). I felt like a 70 year old, I could walk and move around but I felt very lethargic and slow.

    I saw many doctors and had a head MRI and everything came back clear. I requested my GP test me for Epstein Barr virus and it came back positive, I think the GP said it was acute. I recall blood tests coming back normal too except for low Vit D; I supplemented and got back to normal levels.

    September/October 2015: most symptoms subsided. Tinnitus was still there and I'd get random bouts of dizziness but I was mostly ok. Ears still clicking.

    December 2016: eosophogus started to feel very tight, stomach bloating after eating/drinking, lack of appetite and weight loss, sensation of burning skin on chest and arms, undigested food in stool. Doctor prescribed 40 mg daily of Omeprazole. Also felt very fatigued and again

    January 2017: had endoscopy that showed nothing significant (biopsy did not test for H Pylori).

    Still experiencing symptoms such as leg and arm fatigue (feels very laborious to even walk or pick up something light), general feeling of dizziness, eyes feel like they are not focusing correctly, oesophagus feels dry in mornings.

    At the moment the main thing that I am feeling is, something seems wrong with my circulation and its causing my legs and arms to feel tired. Almost like my body isn't oxygenating properly at a cellular or something. The reason why I say this is because when I go to sleep or lay down, I can feel my legs and arms tingling; kind of like when you fall asleep on your arm and it goes numb/tingles, but it takes way less effort. So for example, sometimes I will wake up with a dead arm even if my arm is bent in a funny position rather than all my body weight being on it. It feels like because of this, I am very fatigued. Again I can still walk and move around but for example, if I hold my arms above my head, they feel extremely tired and I need to rest them. If I walk for short periods, my back and legs feel very tired. Not typical for a 27 year old.

    I do not feel right at the moment. Something definitely feels wrong and it can be difficult to put into words because symptoms come and go, and I have worse days and better days. But regardless, I do not feel like my usual self and doctors so far have not found any particular reason for my symptoms.

    I understand that the human body is complex and things sometimes are not black and white, I know that OzBargain is not a place for a medical diagnosis. I was looking for advice for what to do when dealing with chronic issues with no answers. I have gotten plenty of good advice and I truly appreciate people taking time out of their day to offer help.

    • [Deactivated] on 26/01/2017 - 21:57

      Neurotoxic Vestibulopathy?

      Those affected complain primarily of
      disequilibrium or imbalance, a sensation
      of “dizziness” or “lightheadedness,” a
      sense of motion (vertigo), and fatigue.

      These symptoms may make it difficult to
      concentrate or result in irritability.
      Additional visual symptoms may occur,
      including a difficulty changing focus
      (accommodative dysfunction), and a
      perception that the visual field is in
      motion (oscillopsia). In some patients,
      more complex visual illusions may
      occasionally occur.

      Quinoline neurotoxicity may also result in
      additional neurological symptoms,
      including a sensation of tingling in the
      hands, feet, or face (paraesthesias), or
      painful sensations (dysesthesias).
      Neurotoxic injury to other areas of the
      brainstem may result in instability in
      heart rate and blood pressure, or
      temperature regulation (dysautonomia),
      or symptoms referable to the digestive
      system.

      Quinoline neurotoxicity may also cause
      prominent mental health symptoms. For
      example, those reporting persistent
      vestibular symptoms from mefloquine
      typically report co-morbid psychiatric or
      neurocognitive symptoms, including
      anxiety, parasomnias, concentration
      difficulties, memory impairment, mood
      and personality disturbances.

      • fivespice on 26/01/2017 - 22:27
        +1

        Thanks for this information, I will do some research and consider this condition as a possibility.

        • [Deactivated] on 26/01/2017 - 23:26

          Have you ever had anti-malarial therapy?

        • [Deactivated] on 27/01/2017 - 07:11

          Have you ever stayed in the rural areas in Sumatra, Sulawesi, Kalimantan and Nusa Tenggara Barat or in eastern Indonesia (provinces of Papua Indonesia, Irian Jaya Barat, Nusa Tenggara Timur, Maluku, and Maluku Utara)?

        • fivespice on 27/01/2017 - 10:38

          @Jar Jar Binks:

          I don't believe I have. In Indonesia I have only visited Bali. Specifically the areas of Ubud and Seminyak. And I do not ever recall having anti-malarial therapy.

    • Skramit on 26/01/2017 - 22:00

      Sounds horrendous. Good luck finding out what the issue is.

      I say stick with regular GPs until you find one ready to fight for a diagnosis for you.

      Do you consume caffeine btw?

      • fivespice on 26/01/2017 - 22:21

        It is not fun but I am positive I will get through this OK. Yes I do but I have reduced consumption after symptoms started. I regularly drank 2-3 cups of coffee a day.

    • mrham on 26/01/2017 - 22:20

      Drink more water.

    • Scrooge McDuck on 26/01/2017 - 23:44

      *brofist*

      Do you ever have days when you have no symptoms and feel 100 %?

    • [Deactivated] on 27/01/2017 - 00:36

      Jebus. How awful.

      Please keep us updated on your progress with doctors and tests. I hope you get some answers soon.

      edit - at the risk of adding to the list of noobs-on-the-net-offering-medical-opinions..

      Have you/your doctors looked into Guillain-Barre Syndrome?

    • drrrr on 27/01/2017 - 00:40

      H pylori can cause peptic ulcers but won't cause your other symptoms of fatigue etc. Maybe you should consider seeing a neurologist to exclude the funny neuro stuff like Myasthenia gravis, MS etc. Your symptoms are atypical though and the waxing and waning makes me think it's a functional disorder esp with the normal MRI.
      I've read some of the previous comments & I have to refute the mycoplasma theory - it sounds good to a layman but its got absolutely no medical basis that I'm aware of.

    • syousef on 27/01/2017 - 09:26
      +1

      I have no medical qualifications so take this with a grain or two of salt. But I would guess (and it is a guess) that there are 2 or more conditions here causing the wide variety of symptoms. (Again a guess but at least 3).

      I can tell you from first hand experience if nothing comes back positive with your stomach issues they just call it IBS and tell you how to manage it. It's important to get the testing done though to rule out cancer and other nasty conditions.

      Even ear wax buildup can cause extreme dizziness etc.

      Lots of conditions can cause neuropathy and tingling. Pinched/impinged nerves (if it's just your hands I'd be suspecting carpal tunnel, but you can have impingment at any joint)…. Diabetes (which I assume you've been tested for among the blood work).

      You are fortunate that you are no longer overweight. It does cause a lot of issues and often even a good GP will look no further if you're obese. But bad ones will downright be annoyed that you're wasting their time. Never mind that the weight may be just one possible cause.

      Doctors follow diagnostic protocols. This works well for most cases and is the best method they (or anyone else) has for diagnosing things. But if there's a flaw in their diagnostic process for picking something up you'll get doctor after doctor applying the same methods and failing. You need one that does follow the protocols but then is able to think outside the box (and no I'm not talking alternate voodoo crap).

      I;ll give an example. Posterior (popping out backward) shoulder dislocations are often misdiagnosed causing permanent long term damage. The reason is you need a different x-ray (auxilary? axial? Can't remember….but scan from a different direction). to the more common anterior (popping out forward) dislocations to pick them up. There are some good write-ups and one in particular in the journal of emergency medicine was great but now it's paywalled.

    • peterpeterpumpkin on 27/01/2017 - 10:15
      +2

      If you ever get a definitive diagnosis or feel certain things made you feel better it would be great if you could update us here. One of the biggest problems with all-encompassing medical forums is that people almost NEVER come back.

      Person 1: "I woke up with pain in my right elbow"
      Person 2: "OMG me too"
      Person 7: "So many of us I wonder what the cause is?"
      Person 35: "I'm going for a barrage of tests on Thursday. I promise to update you"
      Person 67: "I'm also going for tests this afternoon. My specialist seems confident in a diagnosis. Did persons 35, 39, 45, 46, 52, 63, 66 ever get back to anyone?"
      Person 72: "Whatever happened to all those people that went for tests? Person 67, are you alive?? OMG I'm freakin' out!"

      One of the biggest frustrations is being diagnosed with a disease with no definitive symptoms, such as fibromyalgia. With some GPs you'll feel like they're wiping their hands clean of further diagnoses while others will assume it's all psychological to begin with. Meanwhile, some lady in the UK with chronic symptoms for 6 years is finally diagnosed and treated successfully for extrapulmonary tuberculosis. I can't imagine my GPs of ever diagnosing a disease that doesn't display typical symptoms. Admittedly, the fact I frequently travel to the world's most disease-ridden regions wouldn't make their job any easier.

      • fivespice on 27/01/2017 - 10:41
        +1

        That also frustrates me when reading other forums. If I find an answer I will most certainly make an update to the thread as I frequent ozBargain quite a bit.

        Did you personally have issues where you had trouble getting a diagnosis?

        • peterpeterpumpkin on 27/01/2017 - 11:16

          That would be great!

          Yeah, almost every time I go to a GP I get a "you'll be right". Someone suggested to me that GPs, like humans in general, might not take invisible symptoms seriously if you come in smiling and up-beat since you'll look healthier than 90% of people coming in there.

          I don't know how doctors work but from my experience it seems it's up to the patient to demand a referral to a specialist. I've had bouts of extreme dizziness on-and-off for around 4 years that have been getting more frequent recently (every few months) so I know I should probably ask to see an ENT or similar. Budget-wise, I just don't want to be one of those people that spends $1000 on an ENT to investigate only to end up being prescribed nasal rinses. But on the other hand, it could beat the alternatives…

    • Jikx on 27/01/2017 - 15:35
      +1

      Thank you for sharing!
      You are correct, very bizarre constellation of symptoms, I'm not surprised doctors haven't been able to pinpoint any diagnosis.
      I guess you can frame it in such a way that they haven't found any particular disease, cause the ones that could cause your issues (for example multiple sclerosis, lupus, cancer etc) can be very debilitating.

      I would hazard a guess that you have a chronic fatigue like syndrome.
      Aside from physical fatigue, do you still get a lot of muscle aches, poor sleep, mental fatigue, irritable bowel, headaches, sound sensitivity and or recurrent sore throat/colds?

      The problem with a disease such a chronic fatigue is that the diagnosis itself is not very helpful, as there's not many proven treatments. This is the case of many rare disorders, and at some point (which you may or may not) have reached is instead of spiraling headfirst into the fringes of medicine where some "practitioners" are literally making things up on the fly (I mean look at all the suggestions you've gotten!) - is to stop and assess what your goals are and optimise your life in ways we for sure know helps.

      That's things like:
      sleeping properly and sufficiently
      socialising
      keep working (as long as it's not soul destroying)
      focusing on aspects of your life that you enjoy, and pursue them as much as can even if it's small steps at a time.
      exercise, again within the tolerance of your fatigue. Set goals, add another push up per week etc.
      eating well and healthy, fruits/vegetables/fibre, try new foods even just for the social experience
      stop alcohol
      stop smoking
      stop ilicit drugs

      The unfortunate the fact is occasionally you're the one in a million unique medical case. Sometimes it's just time to say enough is enough, and do the things that keeps both a sick and healthy body well.

      Have a watch of this TED video about one persons experience with CFS: https://www.youtube.com/watch?v=Fb3yp4uJhq0

    • beatwixkid on 27/01/2017 - 19:48

      You sound as if something has triggered an autonomoic neuropathy… possible the EBV or some type of autoimmune reaction or genetic thing? You have said you've been seen by many neurologists and they are the experts in these things. Your autonomic nervous system controls everything, from your gut to your heart.

      I have a patient who was finally diagnosed by a geneticist with Ehler-Danlohs-Syndrome and also suffers from similar symptoms to you (not saying you have EDS!). She was given the run-around for 40 years and told by many people it was all in her head. I met her last year, and we've finally made progress. Many of her symptoms cannot be explained by blood tests or MRIs, but she has a very real organic condition. The only reason her symptoms are being taken seriously now is that she's developed a very prominent tremor which is something you can't "put on".

      Having said that, I have patients who have the same symptoms but the underlying cause is an anxiety. You don't necessarily have to feel anxious in your head, but if your body is stressed out, the adrenaline and stress hormones mess with your nervous system.

      A psychologist is someone you could include in your management if you are feeling overwhelmed or frustrated by this unknown chronic illness.

      Don't give up looking for answers, but make sure you stay well during your journey….and I hope you can see that lots of strangers care about you.

      All the best again.

      • ssx on 27/01/2017 - 21:42

        Sorry if you have already answered this, but are you a doctor?

        Did it take a long time for your patient to see a geneticist?

        • beatwixkid on 27/01/2017 - 22:31
          +1

          Yes, and yes-18 month wait!

    • theraque on 27/01/2017 - 23:14

      Seriously, hypothyroidism. A simple pill for 3-6 months before all your symptoms go away then a pill a day for the rest of your life. Fixed.

  • Slipper on 26/01/2017 - 20:22

    You should definitely get checked for h pylori. Doctors here in Australia underestimate the effects it can have.

    • fivespice on 26/01/2017 - 20:49

      I have a urea breath test scheduled. Just need to wait about a week since I have only recently stopped taking Omeprazole and it can give a false negative.

      • Slipper on 26/01/2017 - 23:37

        great, let me know the results. I had h pylori undiagnosed for a year and I had similar symptoms.
        In the meantime you should try taking a good quality probiotic and digestive enzymes to help with the digestive issues.

      • ssx on 27/01/2017 - 07:53

        I am surprised they gave you omeprazole for undigested food. Omeprazole lowers stomach acid, so wouldn't that make it harder for your stomach to break down food?

        (Undigested food is a common symptom of IBS, but not something I would consider normal).

        • fivespice on 27/01/2017 - 10:58

          Well my gullet felt tight and they thought it was because of reflux, also felt like I had a golfball in my throat. I actually think since this all started that I have silent reflux (also known as LPR). I don't know if this is a recent thing or I've had it all along and not noticed.

          The undigested food issue has passed and my stools are somewhat normal again.

        • ssx on 27/01/2017 - 12:04

          @fivespice: quick question - do you lose your voice/get laryngitis easily?

        • fivespice on 27/01/2017 - 12:17

          @ssx:

          I rarely lose my voice. Last time it happened must have been many years ago. I do notice though that there are days where my voice seems more high pitched, almost hoarse but not really? Since recent symptoms started (DecembeR), my voice box seems to get more fatigued the more I talk.

  • DiscoJango on 26/01/2017 - 21:58
    +1

    thyroid?

    • fivespice on 26/01/2017 - 22:16
      +1

      I've had a recent blood test for thyroid function and am waiting for results. Previous tests haven't indicated anything, although I've heard that the blood tests aren't always conclusive.

  • maxdba on 26/01/2017 - 22:45

    If you can not find a doctor do the job for you in Australia, maybe you should consider go to US for a medical tour.

    • DiscoJango on 27/01/2017 - 09:37
      +2

      US & Medical, better have some good savings put away…

  • Pricebeat on 27/01/2017 - 10:37

    Hi OP, I have similar symptoms since November and have been found to have EBV as well. I still haven't got any diagnosis yet. My Vitamin B12 and Vitamin D levels were really low as well. I am supplementing these vitamins but the symptoms are still there. PM me of you wanted to talk about it.

  • bocca on 27/01/2017 - 10:48
    -2

    You can actually get full genetic testing for around $4k in Sydney.
    they have mapped out the whole human genome and can find any hereditary diseases.

    its expensive, but you are likely to find your diagnosis.

    be warned: you might uncover some extra stuff that you didnt want to know about…

    • fivespice on 27/01/2017 - 11:48

      Thanks for this information. Do you have a link for this? Not sure if I want to go down this route but I am happy to have a look.

      • Jikx on 27/01/2017 - 12:44
        +3

        GAH! I would not recommend it at all.

        Genetic testing will tell you things you never want to know about. It will also impact on your life insurance / health insurance forever. FOREVER.

        Given how you haven't managed to find a diagnosis with your current symptoms, then logically there won't be a gene linked to it.

        Be very careful about this…

        • insular on 29/01/2017 - 15:42

          you make a valid point about the insurance, but then again, how do we know genetic testing centres would disclose this info to all insurance companies? perhaps get it done overseas and pay for it yourself?

          when this gets cheaper i will probably do this, simply because i want to know specifically what to look out for as i age. bowel cancer etc.

      • bocca on 30/01/2017 - 09:25

        All good.

        Yeah I wouldn't recommend it for the reasons that the others suggested, but if you're stuck and want to try something different then give it a go.

        If you want, you can test for a specific type of disease. You can tell them that you dont want to know the results of anything else.

        Try St Vincent's Hospital in Sydney
        https://www.garvan.org.au/news-events/news/new-st-vincents-f…

  • zealmax on 27/01/2017 - 12:29

    Maybe Mold.

    • fivespice on 28/01/2017 - 03:22

      Care to elaborate on why you think this and what can be done to help? I have heard mold mentioned before but I don't really see any spores or anything like that in my household.

      • zealmax on 29/01/2017 - 08:03

        My uncle had lots of vague symptoms. Later including depression. After years of blood works it was found to be related to mold. Mold can hide anywhere. In the ceiling,walls and under the floor.

        • fivespice on 29/01/2017 - 12:40

          So the blood work didn't indicate anything? Any idea how I could test for this in my household?

          Also thank you for sharing your information.

        • zealmax on 29/01/2017 - 14:52

          @fivespice: Blood works indicated mold. I am not a pathologist and do not know thr ins and outs.

  • mahazza on 27/01/2017 - 13:26

    I went through something similar, strangely at your exact age as well. It was awful and persisted for years, often getting worse causing a lot of stress for me.

    I was entirely cured of all symptoms after eating whole-food plant based.

    All the best and feel free to contact me if you have any questions.

    • fivespice on 27/01/2017 - 13:37

      Hi, thank you for sharing. I am happy to flick you a message but I think you have PM's off.

      • JetBombat on 27/01/2017 - 21:20

        Not OP, but highly recommend reading this book. You can buy it or get it from a library.

  • jtc13 on 27/01/2017 - 15:57
    +1

    not a dr or anything but my brother had glandular fever in his 20's and was always advised that it can come back again without warning. This can happen any time but usually occurs if you get run down for some reason. Sounds like you may have a recurrence.

    • fivespice on 27/01/2017 - 16:15

      It is possible, but I wonder why this time I am having some gastrointestinal symptoms when last time I didn't.

      • [Deactivated] on 27/01/2017 - 16:47
        +2

        What if they're unrelated and the timing was just a matter of coincidence?

        • Scrooge McDuck on 28/01/2017 - 12:15

          Or the stress of the gastro caused the viral illness to resurface?

  • amx on 27/01/2017 - 17:01
    -7

    As you have been advised by other ozbargainers, you really need to find someone that knows his stuff.
    Typical GPs may have never seen all these symptoms at once and they may send you to a specialist that
    also may not have seen this.

    The best place to see different opinions and from those that may have seen many cases is in the ER in a public hospital.
    The best time would be mid-week when the good specialist are working, and you avoid the broken arm/leg army in the weekend.
    Just rock up and say you have pain somewhere. Make sure you make it complex enough that they don't dismiss you too quickly. Even if you get greeted by a JMO, very soon they will pass you on to the more experienced CMOs and SMOs and their specialists, and often they will do a round of tests right there. Given your case, many of those guys would actually be interested to know more about your issues, as opposed to GPs that want to quickly get to the next patient.
    And of course go well before hand-over time (6pm).

    The good thing with going to ER in a public hospital is that it doesn't cost you other than time, and you can go to different hospitals, and you don't need any referrals, etc.

    • mrham on 27/01/2017 - 17:29
      +4

      Emergency rooms are for people with real illnesses

    • Jikx on 27/01/2017 - 19:24
      +7

      Do.
      Not.
      Go.
      To.
      The
      Emergency.
      Department.

      Please!

      They'll throw you out faster than.. no they'll make you wait 8 hours then kindly ask you to go back to your GP for referrals.

    • May4th on 28/01/2017 - 00:10
      +3

      you could not possibly have given worse advice

    • MessyG on 28/01/2017 - 14:16
      +2

      No, just no. Emergency departments are for people who's lives or limbs are at imminent risk. ED doctors have enough on their plate and aren't trained in prolonged diagnoses, and the specialists in the hospital who are wont admit you, preferring to see you as an outpatient which is the right approach. Secondly, assuming all basic workup has been done, any special testing that does come back will take days to weeks, by which point you will have gone home.

      And while it may be no cost to you, the cost to the public purse is HUGE.

  • tj101 on 27/01/2017 - 18:29

    Have you been check for diabetes? You can be of normal weight and young and get diabetes. It can cause dizzieness, brain fog, weight loss or gain, muscle fatigue, vision problems and a host of other problems because it lowers your immune system causing you to get other illnesses more easily, suffer more from them and take longer to recover from them. Docs often don't test young normal weight people unless you ask.

  • minotaurian on 27/01/2017 - 18:32
    +2

    I want to share my experience with you as I believe I share the same symptons and we are around the same age.

    I went through the works as you have, but was met with the diagnosis of vestibular migraines, which often is a diagnosis of exclusion.

    Nevertheless, my symptoms (tinnitis, bruit, dull hearing, vertigo, brain fog, clicky jaws, tiredness, social anxiety, mainly from brain fog and tingly sensations first started in year 12 and often comes and goes while I was at university. After a while, I linked it to stress and being a hypochondriac.

    Many years has passed and overtime I identified the pattern and way to reduce bouts. For me, I linked it to lack of sleep, stress, sinus, euchastian tube congestion and possible TMJ dysfunction or tight neck muscles.

    Obviously fixing these issues help reduces bouts usually lasting 1 month to a few days. I.e for sleep I would not use a computer, write my thoughts or plans in a dairy, drink warm milk and etc prior to sleeping… For stress, I would confide in my partner and gym…for sinus, I would nasal rinse, use a baloon like an otovent and do the
    epley manoeuvre…for the TMJ and neck muscles I would do stretches.

    At the end of the day, if fatal conditions are ruled out, the main things is not to worry and find coping mechanisms.

  • PaperplaneXXX on 27/01/2017 - 19:31

    HAVE YOU EVER HAD A TICK BYTE??

    • [Deactivated] on 27/01/2017 - 20:27
      +2

      Is that bigger or smaller than a terabyte?

    • fivespice on 27/01/2017 - 20:35

      Not that I know of. Never had a bullseye rash or anything either.

  • insular on 27/01/2017 - 20:17

    hi, i haven't read through these 4 pages of comments, but i have one question:

    have you ever taken any course of antibiotics? if so, which ones?

    epstein barr took me about 6 or so months to recover. i didn't have swollen glands, but did have pain in the spleen, among other symptoms like severe fatigue, bleeding wouldnt stop from shaving cut (ie. no coagulation). i thought i was dying. i think it did do some damage to my energy levels from then on, as it does to a lot of athletes (never the same again).

    edit: OK I read back a few pages and noticed you had a lot of similar problems to me in june 2015. you've also done a lot of travel. there is a family of antibiotics that cause issues that you may have taken while travelling or since coming back. before this date did you ever take anything while travelling or have antibiotics given in hospital via IV that you don't know what they gave you?

    • insular on 27/01/2017 - 23:44

      @fivespice plz read this.

    • fivespice on 28/01/2017 - 03:24

      Hi Insular, I am sure I have taken antibiotics. I don't remember which ones or when. I think I took amoxycillin at some point in 2013 or 2014 for a sore throat. I didn't take any while travelling or after coming back I think and certainly no antibiotics through a hospital IV.

      • insular on 28/01/2017 - 12:27
        +1

        amoxycillin should be fine. specifically, the problem antibiotics (and there are others), are from the fluroquinolone family eg. ciprofloxacin

        it is commonly over prescribed for minor infections and is often (far more than the pharma companies would have you believe (cover up)) associated with permanent side effects.

        if you've taken those at any point then it could be a possibility.

        otherwise there's plenty that can't be diagnosed from blood tests/scans etc.

        travel vaccinations? some vaccs DO have side effects and they may be serious in some cases. rabies vacc (verorab) for example, gave me excruciating nerve pain in the pelvis to the point i couldnt sleep after the 5th injection. even the swine flu vacc gave me a stinging in my throat for a week and just wouldnt go away.

  • frugal investigator on 27/01/2017 - 20:18

    The problem is there is no such thing as a whole of body doctor other than a GP. This is why we have specialists for each area.
    I would keep a journal of your symptoms day by day and then give it to a GP to diagnose and send you to the right specialist.

    Be careful, Dr Google is not your friend ;)

    • [Deactivated] on 28/01/2017 - 00:53

      Doctors who are also Generalists in order of severity of Disease (ie know a lot about a lot of things in Medicine)
      General Practitioners - usually time restrained due to bulk billing
      General Physicians - becoming rarer because they tend to sub-specialise in more lucrative areas of medicine
      Emergency Physicians - time restrained due to the 4 hour rule
      Intensive Care Physicians - also known as expensive care physicians - you literally need to be dying or at a reasonably high risk of dying or to see one of these

  • minotaurian on 27/01/2017 - 22:16

    I wonder if you get enough good quality sleep? Considering your caffeine intake.

    Good quality in terms of 8 hours of natural and continuous sleep and without the use of medication (1st gen anti histamine, benzodiazepine, SSRI, tricyclics, melatonin and etc.) as these can mess with your sleep cycle.

    Sometimes its hard to tell if you had good sleep because you can sometimes wakeup without being conscious before falling back to sleep, due to causes like sleep apnea (as you mentioned to be overweight-try ripsnore) or silent reflux (try a wedge pillow). The issue is that the more you wake up, the harder it is to get into stage 4 deep sleep, which is important for recovery.

    Maybe try a sleep study or get sleep tracker like a up3 jawbone or fitbit and gauge it yourself initially.

  • theraque on 27/01/2017 - 23:01

    Have you had a blood test for hypothyroidism? All your symptoms including your previous lifestyle all sound like this is the cause. It goes undiagnosed especially in men very easily and is reponsible for many functions going berserk in the body.

    http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-re…

    Reckon I've nailed it in one.

    • insular on 27/01/2017 - 23:43
      +1

      i reckon you haven't. this would have been picked up in a blood test he's already had.

      • theraque on 28/01/2017 - 07:08

        I didn't read previous comments, but apparently he's waiting on results for this. We'll see.

  • kywst on 28/01/2017 - 11:11

    Sounds to me you were given a diagnosis of Mono which manifests with symptoms affecting areas you identified. Hypochondria perhaps?

    Here's what I tell late 20s who have spent the good part of the last decade surviving on chips, lollies, soft drink and chocolate while smashing their livers and kidneys through binge drinking …

    1) no more junk food
    2) for every hour you spend in front of the PC you need 15 mins of exercise.
    3) lay off the booze or at least scale back … Full strength to mid.
    4) lay off the drugs too.

  • Faithgrrl on 28/01/2017 - 11:53

    Have you considered salicylate sensitivity? I seem to have this and a low salicylate diet has helped me HEAPS with the eczema. Saying that, I am currently investigating WHY I have the sensitivity now not later. There is an FB group and I seem to see alot of posts where people complained about strange and debilitating bodily sensations when they have too much salicylate.

    Here is some links. I also see a kinesiologist (yes go ahead, neg away) which gives me a personalise food plan and that helps me alot.

    Here is some links re salicylates:
    http://www.fedup.com.au/factsheets/blog

    I have also trawled through this entire comments and I reckon Dr Emerson is on my list…..he sounds awesome.

    • May4th on 29/01/2017 - 01:05

      i hope he relieves you of your symptoms as well as your wallet! 600 for a consult!

      • Faithgrrl on 29/01/2017 - 15:39

        So do I. My ozbargain savings has to go somewhere! Thanks for letting me know his price. I am in sydney and was thinking of a medical holiday if it all goes to s**t. $600 aint great but I cant tell you how much I have spent on things that dont work.

  • Untameable on 28/01/2017 - 11:54

    No. But I sympathise.

    I've been feeling exhausted for about 10 years. I went to a few GPs and they ran the same blood tests and said I was fine. I got put onto thyroid medication as I was right on the threshold of slightly under - but even years later - it has made zero difference to feeling exhausted.

    It could be weight related. I'm trying to exercise more. But of course that's hard to do when you're half asleep day in day out.

  • Davo1111 on 28/01/2017 - 13:17
    +1

    Are you collecting all the blood tests data from all these different docs? Putting them all into Excel and tracking them over time might help

    • insular on 28/01/2017 - 15:22
      -1

      problem is, most of his symptoms aren't detectable in the blood.

      neuropathies, damage to the body on a cellular level etc.

      and if they're not debilitating they won't even show up in any other tests either.

      he is also at risk of getting a rubbish 'go away' diagnosis from doctors that simply put it in the 'too hard' basket. sometimes doctors will just do nothing. this can complicate his life (travel insurance etc.) giving him conditions he thinks he has, but doesn't.

  • Blackpuddytat on 28/01/2017 - 18:52
    -1

    I would strongly suggest you obtain a referral from your GP to see a specialist at an Infectious Diseases outpatient clinic at a major hospital. If your GP decides that your issue is a priority (and it may be if it is recurrent), he/she may try and get you seen sooner. If you are not happy with a hospital you visited previously, make sure your GP understands your concerns.

    They will probably order a blood and urine samples and go from there, particularly if a lot of time has passed from an initial diagnosis. Whether you choose to go the western or alternative medicine route afterwards is up to you of course, but being linked into the hospital system first for a thorough analysis, particularly if it is a complex issue is a good place to go, and infectious diseases specialists are good for a holistic approach and referrals can easily be made to other departments if required.

    I'm sure it doesn't need to be said, however if your symptoms in the meantime suddenly change, become aggressive or you get severe pain, go straight to your local hospital's emergency department.

    Hope that helps and all the best.

  • serpserpserp on 28/01/2017 - 21:20
    +2

    Moderators should delete this thread.

    • fivespice on 28/01/2017 - 21:36

      Care to share why?

    • Kempe on 28/01/2017 - 22:25

      I agree to the deletion, full of hypochondriacs coming up with bizarre stuff

    • captainandg on 29/01/2017 - 04:16

      agreed.
      -medical doctor

      • insular on 29/01/2017 - 12:21
        -4

        the fact you're a medical doctor and you agree with prospective deletion is disturbing. there are many illnesses that are difficult to diagnose that get thrown in the too hard pile.

        if a doctor doesnt want to work the the patient to find the cause and not just treat the symptoms as they prop up they shouldn't be practising medicine. it's a disgrace and just makes the patient sicker for their cash cow.

        • plasmapuff on 29/01/2017 - 21:03
          +1

          There is a time and place for medical consultations.

          A public forum where you have an incomplete history and no ability for examination and where random Doctor Googlers chipping in with random diagnoses or anecdotal experiences is not helpful to the OP.

          See a good GP - get the baseline redflag investigations done. Then if still stuck he/she can coordinate and refer you to the appropriate specialities eg Gastroenterology for an endoscopy. An internal medicine specialist who sees more of these difficult cases may also be a good second set of eyes in addition to your GP.

          /end thread.

        • plasmapuff on 29/01/2017 - 21:06
          -1

          Btw insular. You sounds like a borderline Anti-vaxxer. All vaccines can cause a temporary reactive flu like illness which can explain your sore throat for a week.

          Better to get a sore throat than to get influenza, get intubated and spend a week in ICU because of respiratory failure…
          Or rabies…

        • insular on 29/01/2017 - 21:49
          -2

          @plasmapuff: WRONG.

          i am very much pro-vaccination. and think those that don't get their babies vaccinated against some of the worst illnesses the world has ever seen is stupid. some of these are already starting to see a comeback as a result of soccer moms believing blogs and womens magazine articles over professional advice.

          however, in some cases, there are ill side effects and these can be serious. i question whether some people may have a genetic predisposition to having reactions to some vaccinations, in which case they should be exempt. but the problem is, people will just use this as an excuse.

          H15N1 was however, in my case (a short trip to asia) unnecessary. it is however, necessary in the young and the elderly with compromised immune systems. but it seemed to be more fear mongering from WHO than anything.

          the stinging sore throat was more of an annoyance than anything, just had me enjoy me trip a little less. but i suppose if i had gotten swine flu it was preferable to being bed ridden with what i heard was a 'really nasty flu'

          and as for the other stuff. NOBODY IS DIAGNOSING ANYTHING. most are merely providing suggestions, one of which may be useful to me as well which i will go over with my doctor as a possible cause to issues i had in asia as well.

          i was diagnosed with h.pylori once, and took a course of antibiotics to supposedly cure it. it may or may not have done so, but this is one instance where i believe i shouldnt have taken that course of antibiotics. largely because it is so common, and unnecessary antibiotic use should be avoided.

          as for rabies, well, i was bitten and even though it was low risk, i still got all 5 shots. i should have gotten the 3 beforehand, but i was advised not to bother ……cough

          the thread should be ended once the op gets back to us with a diagnosis.

        • MessyG on 30/01/2017 - 07:53
          +2

          I think it should be deleted too. There is a lot of dangerous advice on this thread. Suggestion was made by sensible people to seek specialist advice on the first page, no need for it to go on.

        • insular on 30/01/2017 - 12:59
          -3

          @MissG: i dont think suggesting possible conditions and possible tests one might undertake is dangerous.

          the intracellular parasite talk is something i never even know of, and i bet my GP doesn't either. whether it's accurate and something to be considered or dismissed is another question.

          i agree though, acupuncture is bollocks!

          but if you take what someone else says on the internet seriously, you should probably log off now.

          go back to them women's meetings, same same but different ;)

        • MessyG on 02/02/2017 - 14:26

          @insular: If you can't recognise the dangerous advice on the thread, it makes it more dangerous. Re the women's meetings, you sound pretty experienced with them so I'll leave them to you, I have too many hospital ones to attend as it is :)

        • insular on 02/02/2017 - 16:27

          @MissG:

          If you can't recognise the dangerous advice on the thread, it makes it more dangerous

          like i said, giving him a list of options to go over with his GP and possibly a specialist isn't dangerous. especially if one can bring some ideas into meetings with …medical professionals.

          i dont think there are too many credible suggestions here anyway.

        • MessyG on 02/02/2017 - 18:43

          @insular: If all the posts on here just suggested that, then fine. But they don't, there's a lot of rubbish on here that may not seem credible to you but that people will go off and do in lieu of actually doing something sensible, for a variety of reasons.

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