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

  • StewBalls on 24/01/2017 - 15:10
    +17

    Insert any one of a range of lines from House MD here…

  • Gronk on 24/01/2017 - 15:28
    +33

    In the wise words of Tim Minchin -

    By definition, alternative medicine has either not been proven to work, or been proven not to work. Alternative medicine which has been proven to work is simply known as - medicine. Personally I wouldn't go near it but the power of belief is a strong thing, but just remember that treatments suck as Accupuncture have been proven to be equally as effective as a placebo.

      • Gronk on 24/01/2017 - 16:44
        +6

        You say 'can' a number of times in your response, this only expresses that there is a potential of achieving a particular result but in no way assures it. It's just a different brand of snake-oil in my opinion.

        • [Deactivated] on 24/01/2017 - 16:49
          +6

          Can is the correct term

          paracetamol is medicine and it can resolve or reduce head aches, but is not 100% effective.

          chemotherapy is medicine can force cancer into remission, but is not 100% effective

          contraceptives can prevent unplanned pregnancies, however are all between 0% and 97% effective depending on the product

          standing in the swimming pool does/will make you wet.

        • Scrooge McDuck on 24/01/2017 - 20:08
          +26

          @carlb:

          standing in the swimming pool does/will make you wet.

          Not if it's empty.

        • Seraphin7 on 25/01/2017 - 08:55
          +6

          @Scrooge McDuck: It will if its raining !!!

        • Gronk on 25/01/2017 - 09:02

          @carlb:

          Can is the correct term

          I don't disagree with that, but the main difference between mainstream and alternative medicine is the presence of documented clinical trials which prove efficacy.

          Having said that I generally only visit the doctor as a last resort when something is very wrong, which thankfully isn't often at the moment :)

        • Scrooge McDuck on 25/01/2017 - 10:11
          +14

          @Seraphin7:

          It will if its raining !!!

          Not if it's an indoor pool.

        • [Deactivated] on 26/01/2017 - 08:06

          @Scrooge McDuck: so there it is
          Definitive proof 'can' is the correct term for every medicine and alternative medicine, treatment and alternative treatments. As the outcome can always change in individual variables including volume of water.

          Not enough or too much water can completely change the operation of the body.

        • Scrooge McDuck on 26/01/2017 - 12:04
          +3

          @carlb:

          "Can" in this case, is a weasel word which vaguely indicates that something occurs with a probability between certainty and impossibility. It does next to nothing to compare the efficacy of treatments.

        • Musing Outloud on 27/01/2017 - 13:40

          @Scrooge McDuck: But if pool is empty, stand in it only during rain!

        • [Deactivated] on 27/01/2017 - 22:47

          @Scrooge McDuck: all medical treatments state can
          Full stop end of story.

          The most expensive education institutions still only day they can get you a dream job.
          The strongest laws in the world can reduce crime. But some times doesnt

        • Scrooge McDuck on 27/01/2017 - 22:52

          @carlb:

          all medical treatments state can

          Yes but it's so vague that it lumps science with pseudoscience.

        • [Deactivated] on 27/01/2017 - 23:08

          @Scrooge McDuck:
          So in other words you don't trust what medical science has become the days?

          You may be surprised but you probably should try acupuncture, I've only been once but in theory it should work as well as a massage.

          Drug have become such a cash cow, when the patent runs out the company simply add some sugar or other additive and re patents the exact same product, with some marketing to shut out the copycats using the old equally effective formula

        • Cataclysm on 28/01/2017 - 07:50

          @carlb:

          chemotherapy is the worst.

          It has greater chance to make you worse.

          Do not consider that if you are not dying.

      • stumo on 25/01/2017 - 21:00

        Not sure why carlb is getting so many negs. I've had acupuncture needles hooked up to mild electric shocks by my physio when I had a bulged disc. One of my butt cheek muscles was compensating so hard for my lower back problem, that it became severely painful to even walk. After about 5 mins of this weird treatment and some stretching I was good to go (G2g in terms of my butt cheek muscle, the bulged disk took a few years to come right, as you would expect) So acupuncture definitely does work, when used for the right things. Which is what carlb was saying. I don't believe in any of that other alternative crap though.

        • Scrooge McDuck on 25/01/2017 - 23:24

          After about 5 mins of this weird treatment and some stretching I was good to go

          Could it have been the stretching rather than the weird treatment which was effective?

        • [Deactivated] on 26/01/2017 - 08:02
          -3

          @Scrooge McDuck: the stretching would still not be medicine apparently so how can you suggest stretching works

        • StewBalls on 26/01/2017 - 10:37
          +2

          Not sure why carlb is getting so many negs.

          Leading with a Trump barb is an instant fail for starters…

        • stumo on 26/01/2017 - 11:03
          +1

          @Scrooge McDuck:
          No its a hard muscle to stretch, even when you aren't almost incapacitated due to lower back problems. It's also very deep, so normal massage/manipulation isnt possible either. I asked him how far in the needles were since I couldn't see (they were about 4 inches long) and he said "you dont want to know".

          But wither way, I could feel the shocks pulsing the muscle and it almost instantly felt better. Then we went back to the stretching exercises once I was more mobile after 5mins of acupuncture.

          This wasn't some sort of chiro quackery, this guy is a proper physio.

          All I'm saying is, acupuncture has its place in proper professional medical treatments (in limited situations like this). I agree it's also used by quacks for their endless cure-all BS, but that doesn't mean it doesn't work for certain things.

        • Scrooge McDuck on 26/01/2017 - 12:11

          @carlb:

          the stretching would still not be medicine apparently

          Why?

        • Scrooge McDuck on 26/01/2017 - 12:12
          +4

          @stumo:

          But wither way, I could feel the shocks pulsing the muscle and it almost instantly felt better.

          This sounds more like TENS than acupuncture.

        • ThadtheChad on 27/01/2017 - 09:53
          +1

          @stumo:

          Pretty much the only thing acupuncture is good for. There is a scientific basis for the effectiveness of acupuncture to treat this (although very controversial); moreover the "dry needling" technique used by a lot of physios is based off this.

          The concept is fairly simple AFAIK, when you have a trigger point (a bunch of muscles which are stuck in a contracted position) you cause "trauma" to the muscle directly (using a needle) which will result in a protective response releasing the contracted muscle.

        • stumo on 27/01/2017 - 10:09
          +2

          @gearhead:
          OK thanks. Yep it sure did work for me, and it sure seems like it wouldn't be applicable for anything other than this specific case. It is a case nevertheless, which was the point I was making.

          Also I think in my case it was the electric shocks which pulsed the muscle back into a relaxed state that did the real work. The acupuncture needles were just used to get the shocks directly deep down into the problem area. I don't like the sound of that trauma method you mention, but I can see how it could work in this case.

        • ThadtheChad on 27/01/2017 - 10:15
          +1

          @stumo:

          Also I think in my case it was the electric shocks which pulsed the muscle back into a relaxed state that did the real work. The acupuncture needles were just used to get the shocks directly deep down into the problem area. I don't like the sound of that trauma method you mention, but I can see how it could work in this case.

          Typically just the act of inserting the needle into the muscle tissue is good enough (and should result in the synapses firing off the release response). However, sometimes a bit more persuasion is required before the bastard releases, which is when you use electric conduction (like in your case) or gently moving the needle in a circular motion.

        • Musing Outloud on 27/01/2017 - 13:44

          @Scrooge McDuck: Actually, this is a variation on the TENS treatment. Stretching the muscle isn't enough on its own, it needs deep painful massaging to stretch the contracted muscle fibres and treatment so it "Forgets to spasm". Stretching only maintains the benefit.

          OOPs, just read the other replies which say roughly the same thing…

        • Buggles on 13/09/2017 - 16:36
          +1

          I've come in a bit late, but…my GP tells me he has read numerous peer reviewed articles on PubMed which prove that Electrical Acupuncture works in many instances, so much so, that he is going to start using it in his practice. Since this guy is very evidence based, non woo woo and down to earth, I'm definitely going to accept his opinion.

    • mskeggs on 24/01/2017 - 16:55

      I actually take the opposite view on some alternative medicines. Homeopathy, for example, is a potent source of strong placebo :-)

      Since conventional medicine defines itself as being incomplete and potentially wrong (the key, after all, of the scientific method), I reckon alternatives are suitable where conventional is failing.
      And they can be more convenient.
      Treatment for lower back pain, as an example, is pain relief followed by surgery if ineffective if you visit a conventional doctor.
      Visit a chiro or an osteo, or visit an acupuncturist or other TCM and you have a rich source of treatments that can amplify the placebo effect.

      If this results in symptoms resolving, this is completely as valid a cure as one where the cause and effect has been clinically replicated.
      If you are unsuccessful, you are out the cost of the treatment and a little time - seems worth a punt to me.

      Does that mean I pray to wicca to set a broken bone or skip vaccines for my kids and feed them colloidal silver instead, of course not. But where traditional medicine has had limited success, try out an alternative.

      • Jolakot on 25/01/2017 - 18:37
        -2

        Are you sure that osteos aren't traditional? They're actual doctors, as opposed to chiros who are not and often focus on natural remedies.

        • jzdhgkd on 25/01/2017 - 19:14
          +5

          In USA they are however in Australia they are alternative. They can't prescribe nor refer for medicare-rebate radiology etc. Not sure if they can refer to a medical specialist but I would say probably not.

        • CheapCoffee on 25/01/2017 - 22:36
          +2

          No. Not in Australia as far as I know. Osteopathy courses in Australia is just a short bachelor's degree

        • dazweeja on 26/01/2017 - 20:51

          @CheapCoffee:

          4.5 year double-degree at VU, 5 years at RMIT. Not doctors but not exactly short either.

      • Architectonic on 26/01/2017 - 13:29

        The "placebo effect" is basically distraction, it's only measurable effect is how symptoms are reported (eg on questionnaires).

        Placebos have no worthwhile effects on disease pathology.

        https://sciencebasedmedicine.org/is-harnessing-the-power-of-…
        https://www.ncbi.nlm.nih.gov/pubmed/20091554

        • mskeggs on 26/01/2017 - 14:35

          Read the Cochrane abstract again. It says placebo effect has sometimes substantial effects, especially on pain, but they are not clinically predictable/reproducible, which we know.
          This is important if your goal is outcomes, rather than understanding the process. For most patients, outcomes are the important factor. Just because you can't deliver the improvement equally to all patients shouldn't mean you ignore it for those who benefit.

          If you have lower back pain, and find (e.g.) Chinese herbal tea gives you relief, why would you deny yourself that treatment because you can't show a cause and effect mechanism?

        • Architectonic on 26/01/2017 - 15:54
          +2

          @mskeggs:

          I have read it in detail. Perhaps you should read the Cochrane review again.

          The "effects" were entirely on self report questionnaires in unblinded studies. There was no effect of placebo pills on pain. The "effect" across pain studies disappeared when doing a sensitivity analysis, specifically eliminating a series of sham acupuncture studies conducted by a single research group.

          Simply put, the patients are not functionally improved, they are simply ticking different boxes on the questionnaires.

          Unblinded trials with self report questionnaires are usually biased, leading to serious credibility issues in unblinded studies that do not use objective measures (objective measures are not difficult and should be mandatory in such studies, objective measures can include actigraphy (step counts), exercise capacity, neuropsychological tests, return to work etc.)

          "If you have lower back pain, and find (e.g.) Chinese herbal tea gives you relief, why would you deny yourself that treatment because you can't show a cause and effect mechanism?"

          Because all the tea gives you is temporary distraction. The "treatment effect" is transient and disappears if you have severe pain, or keep trying the "treatment" for more than a week or two. I think it is clear you have no experience with patients with severe chronic symptoms.

          Further reading: "Bias due to lack of patient blinding in clinical trials. A systematic review of trials randomizing patients to blind and nonblind sub-studies"
          https://academic.oup.com/ije/article-abstract/43/4/1272/2952…

        • mskeggs on 26/01/2017 - 22:42
          +1

          @Architectonic:

          I'm not clear what your point is.
          Why is a person reporting lessened pain a problem if other measures show no improvement?
          If a patient describes themselves in less pain after taking a homeopathic pill, is that not a good outcome?

          Nobody is suggesting skipping medical treatment for a belief in placebos or non-traditional treatments, but you and the study both agree that patients reported an improvement. Why not add that to the arsenal for treatments?

        • Architectonic on 26/01/2017 - 23:28
          +1

          @mskeggs:

          Because it's transient. The effect disappears. Look at meta analyses of long term followups of alternative health treatments and you'll see that the effect simply disappears.
          Therefore they are not valid treatments for CHRONIC ailments.

          If you have an non-serious acute injury or headache or whatever and you want a transient distraction from your pain (placebo) for a day, fine, go ahead.

          But don't go expecting them to work over time for chronic conditions.

    • The Wololo Wombat on 25/01/2017 - 14:24
      +1

      This used to be my mantra too. Until I was forced to consider alternatives. I felt like I was 'dealing with the devil' due to my science background. But it got me better!

      • thriftybunny on 25/01/2017 - 17:20

        Me too, but if it works it works.

    • Tech5 on 25/01/2017 - 19:09
      +3

      I am a science believing, journal article believing, god un-believing doctor. Still think Accupuncture works though from personal experience.

    • Cleremy on 26/01/2017 - 10:32

      Yeah stick with allopathic medicine (if they're not helping you) until you're dead and have spent all your savings.

    • DryScissors on 28/01/2017 - 06:43

      I had a vet give my retarded dog acupuncture once, because he was trying to bite one of his legs off. (This was my 8th vet). It worked for about a week.

  • Gunther on 24/01/2017 - 15:31
    +7

    Put 100% of your effort into maintaining a super healthy diet and exercise program. Not just your perception of one.

    Invest into learning these things - it just might help and you have nothing to lose.

    • fivespice on 24/01/2017 - 16:57
      +1

      I have cleaned up my diet significantly and I have an interest in nutrition. I went completely gluten/sugar/dairy free for a month from the advice of a GP around August 2015. I did also feel quite a bit better but not sure if that was related to my diet, or if I just got better with time.

      Most of the time I stick to a gluten free diet and avoid refined sugars but I have occasions where I will eat poorly (holidays/vacations). Thanks for your advice.

      • Scrooge McDuck on 24/01/2017 - 20:12
        +7

        I went completely gluten/sugar/dairy free for a month from the advice of a GP around August 2015. I did also feel quite a bit better but not sure if that was related to my diet, or if I just got better with time.

        So try it again.

        • Thebigshownath85 on 28/01/2017 - 11:54

          He changes his diet and feels quite a bit better - puts it down to the fact he got better with time.

          Lol he's obviously looking for a quick fix as he doesn't want to change his diet because it's too hard.

      • thriftybunny on 25/01/2017 - 17:09

        Hi, similar situation with symptoms without diagnosis, gave up on specialists a while back, I think I've just moved beyond modern medicine - jokes aside I feel your pain, mine impacts my overall quality of life but it doesn't seem like I'd die from it (hopefully not anyway), it's overall manageable once I moved past the frustration.
        Anyway, have you had IgG test or food intolerance tests done? Stress levels? Also don't eat processed food, read labels - I honestly used to be able to eat anything and everything, but not anymore.. and don't over-eat.
        My money spent on alternative medicine has been both bad and good, some were complete BS, but some did actually help.. I'd recommend you find a good Chinese doctor, try Chinese medicine not just acupuncture, I got better on that for a little bit, but then it stopped working.. Maybe keep a food/symptoms journal, and see a dietitian once you have collected some data? Anyway good luck!

        • Scrooge McDuck on 25/01/2017 - 23:36

          I'd recommend you find a good Chinese doctor, try Chinese medicine not just acupuncture, I got better on that for a little bit, but then it stopped working..

          How do you know you felt better for a little bit because of the TCM?

          Could the improvement have been spontaneous or due to another factor?

        • thriftybunny on 29/01/2017 - 11:41

          @Scrooge McDuck: fair question, all I know is I felt better, there is no harm in trying (well it might hurt your wallet a little) even the efficacy rate of big brands medicine isn't always high, when you are in need, you just got to try and find out for yourself if it works.

      • bringitontm on 26/01/2017 - 11:10
        -2

        I would consider adding refined food back in your diet especially white bread, white rice and fruit juices. They are good foods and very easy on the digestive system.
        It would also be a good idea to add sugar back in via fruits and milk and a little refined sugar anit so bad.
        So many times people try to go super healthy and end up in worst health cause they end up consuming too many veggies and not enough calories in general. 80grams of protein a day is a must.
        If you have issues with milk give the lite A2 a try. If you are not good with juice try the nudie orange jucie or aldi brand.

        • BartholemewH on 28/01/2017 - 11:57

          Why drink fruit juice when whole fruit is known to provide far more benefits at a lower GI?

  • kator on 24/01/2017 - 16:03
    +5

    Try more GPs and with different cultural background. GPs from different countries have different education and approach.

    I am from Europe and wanted a white doctor, but got misdiagnosed all the time. Now, I have an Egyptian GP who has a really strong accent, but he mixes the Western and Eastern remedies really well. Or I would say the pharmaceutical and natural remedies.

    • fivespice on 24/01/2017 - 16:52

      I will keep trying and try to find somebody else. Appreciate your information.

      • Scrooge McDuck on 24/01/2017 - 20:14
        +2

        Have you considered seeing an endocrinologist?

        • fivespice on 24/01/2017 - 22:39

          No I have not, but I am more than willing to. Will ask my GP for a referral. Thanks Scrooge!

  • plasmapuff on 24/01/2017 - 16:09
    +3

    Supratentorial causes…

    • fivespice on 24/01/2017 - 16:51
      +1

      Thank you for your suggestion. I very much disagree. I was a pretty healthy 25 year old with a relatively well paying and stress-free job and have a great relationship with my girlfriend.

      It is very difficult to fully appreciate and understand chronic unexplained health issues, so I don't blame you for your views. I probably would've said the same thing that you did in regards to my own question just a few years ago.

    • MessyG on 25/01/2017 - 14:03
      +9

      Just because modern medicine can't explain it doesn't mean it's psychological. At all. History is littered with cases of patients being told it's in their mind before the disease was identified.

      • mskeggs on 25/01/2017 - 18:45
        +1

        And why is the idea that 'it's in your mind' so horrifying? Pain is 'in your mind' but it is a legitimate problem deserving treatment. Addictions are 'in your mind' but have visible physical impacts.

        • MessyG on 25/01/2017 - 19:05
          +3

          It's not horrifying, it's just not a diagnosis you can make over the Internet. Diagnosing psychological disorders that manifest with physical symptoms is a long process and requires a lot of exclusions to be made. I'd hate for someone to read that post and assume their symptoms were psychological, not seek diagnostic workup and miss something life-threatening as a result.

        • plasmapuff on 26/01/2017 - 04:46
          +1

          @MissG:
          However, he has had a thorough work up which has proven to be negative.

          Thus the diagnosis of exclusion…

          The other thing to consider is that once you have the big ticket red flag items excluded (including rheumatology) digging down the path of specific post infectious immunological conditions for example is of questionable value.

          You go through the exhaustive diagnostic testing to be told you have nothing important or life threatening and just need to deal with it with symptom management. Ie diet and exercise.

        • MessyG on 26/01/2017 - 08:19

          @plasmapuff: We have no idea how thorough the workup has been. There is new bowel symptoms here that haven't been investigated. Psychiatric issues is in the list of differentials but it's a big damn list.

        • StewBalls on 26/01/2017 - 10:33
          +1

          @MissG:

          It's not horrifying, it's just not a diagnosis you can make over the Internet.

          I'm not afraid to state that I would genuinely be horrified by any diagnosis that could be made over the internet! ;)

          That said, whilst the modern colloquial use of supratentorial is unfortunately tantamount to hypochondriasis, there is a growing evidence base for idiopathic functional/psychogenic disorders which cannot always be explained by traditional psychological symptoms or historical trauma.

          So yes, whilst it's technically all in the mind, it's not necessarily a result of disordered thought processes…babies & bathwater… ;)

        • Architectonic on 26/01/2017 - 13:30

          "it's in your mind" is horrifying because the end result is zero effective treatment.

        • MessyG on 26/01/2017 - 16:03

          @StewBalls: The 'not horrifying' was the suggestion that it's a mental health issue. Mental health isn't horrifying. But yes, diagnosis over the internet is. Terrifying in fact. And yes, supratentorial needs to be thrown out along with hysterical.

  • [Deactivated] on 24/01/2017 - 16:19
    +1

    you can try one of
    *allergy test
    *a DNA analysis and gene tests

    In the tests You may find you have an intolerance to a natural occurring elements ie starch lactose certain vitamins etc
    or over production of elements by the body such ammonia (hyperammonaemia)

    • fivespice on 24/01/2017 - 16:45

      Thanks for this suggestion, any recommendations on where to find a doctor/practitioner who does these tests? I will have a coeliac test in my next round of blood work but that's about it so far.

      • [Deactivated] on 24/01/2017 - 17:01
        +3

        any gp can arrange an allergy test

        the DNA test compnies listed to provide Ancestry.com, 23andMe, FamilyTreeDNA, Genos, Complete Genomics, WeGene

        I used 23andme however sadly V4 lacks a number of elements or any health info these days so hopefully someone can suggest a better brand from the list.

        For the analysis
        What is Promethease?
        Promethease is a literature retrieval system that creates a personal DNA report based on your DNA data, taking into account all the scientific and medical literature cited in SNPedia. Customers of DNA testing services (Ancestry.com, 23andMe, FamilyTreeDNA, Genos, Complete Genomics, WeGene, …) use Promethease to learn more about their DNA variants, independent of whichever company produced the raw DNA data.

        https://www.snpedia.com/index.php/Promethease

        another Two sites below produce overlapping medical theory reports, but there are some differences as well.
        http://geneticgenie.org/
        https://nutrahacker.com/

        Note DNA is not a guarantee as science still doesn't know what really causes lots of health issues.
        but it can guide towards dietary needs or traits.

        • fivespice on 24/01/2017 - 18:27
          +1

          Thank you for this information Carl, appreciate it greatly.

        • mikeyrichster on 25/01/2017 - 22:13

          DNA data + Promethease was very useful for me getting to the bottom of broadly unexplained issues. Keep in mind that GPs won't always understand the results however, I had to do a lot of research myself.

          The only other thing I'd mention (along with others) is that stress often manifests in a wide range of symptoms. Like nutrition and sleep, improving your stress levels is always a good thing.

      • macduff on 26/01/2017 - 00:54
        +1

        If you are getting a coeliac test, make sure you aren't cutting out gluten from your diet or the test will not be accurate. Might also be worth getting an endoscopy as the bloodtests aren't 100% accurate at the best of times.

        • Cheap Rich Guy on 26/01/2017 - 15:15

          The blood test has a 90% accuracy. If the blood test is positive, a biopsy is performed on a sample of gut taken during endoscopy to confirm the diagnosis.

  • hashtagbargain on 24/01/2017 - 16:30
    +1

    Mono may be triggered by stress. I remember I got it in the same age range.

    I'd recommend lots of rest and ways to target the source of your anxiety. Good luck!

    • fivespice on 24/01/2017 - 16:43
      +1

      Hi, thanks for this information. Problem is I had tested positive for mono and didn't really have any of the traditional symptoms. I don't think I have any major problems with anxiety but I will take your advice on board.

  • Ryanek on 24/01/2017 - 16:47
    +9

    Sounds like a severe case of Ozbargainitis

    • AlienC on 26/01/2017 - 00:55

      Shut case watson good boy old chap

  • BuyoTheCat on 24/01/2017 - 16:52
    +3

    Treating symptoms are most unlikely to solve your problem. My medical skills comes from watching house so I am going to say…..you are lying about something. The only way to fix you is to break into your house and go through your trash.

    One possibility is, as someone mention, food allergies.
    I suggest food change, eat less processed stuff, cook more, using less artificial flavoring and eating less. Incorporate some regular light exercise or even just walks. Longer days in summer so do more outdoor things.

    It might help to keep a log of what you do, interact with, eat when your symptoms strike.

    • fivespice on 24/01/2017 - 17:21
      +1

      I wish I was lying! I appreciate your suggestion, I am starting to do these things. Exercise is a bit difficult but I can certainly go for a walk or use an exercise bike.

      • insular on 28/01/2017 - 01:21

        sometimes exercise can make you feel worse, if you have mitochondrial issues.

  • AirJordan6s on 24/01/2017 - 16:56

    MSA Multiple System Astrophy. Not much is known about this rare disease, often goes misdiagnosed. It's a worse version of Parkinsons however its untreatable. Not here to scare you however, some of the symptoms you described are apparent.

    • fivespice on 24/01/2017 - 17:05

      Hi, I appreciate your suggestion. I won't get into it fully but I don't believe I have this condition.

      • kcyw on 25/01/2017 - 20:29

        My mother had MSA and your descriptions don't fully fit. But this place my mother went to had multiple disciplines specialists at the same place, though they all work on helping patients with neurological condition in Melbourne. May be you can find something like this in Perth.

        The specialists we had help with included neurologist, occupational therapist, speech pathologist, social worker, dietitian.

        https://www.calvarycare.org.au/public-hospital-bethlehem/

  • susmind on 24/01/2017 - 17:46
    +1

    The chemicals that give products their fragrance are increasingly being linked toward range of serious health issues, including cancer.

    http://www.smh.com.au/good-weekend/the-serious-health-issues…

    • Diji1 on 24/01/2017 - 17:53
      +3

      Junk science sells ads when it claims your going to die from something.

  • StewBalls on 24/01/2017 - 18:01
    +8

    My serious answer is to just persevere with your medical professionals, try not to get frustrated, but be the squeaky wheel…I hate to say it but you might have to shop around a bit til you get a GP that's pretty switched on, because these idiopathic/non-syndromic systemic issues can be very difficult for a medical team to differentially diagnose; and they're only human, in the absence of any clear diagnostic/prognostic direction they will be just as stumped as you until they can conduct a lot of longitudinal diagnoses of exclusion.

    EBV can be the catalyst for a number of sequelae, so gently remind them not to throw the baby out with the bath water on that…but just hang in there & keep a good record of the signs/symptoms & any other presentations to assist with the ongoing diagnostic process.

    I hope it goes well for you.

    • fivespice on 24/01/2017 - 18:26
      +2

      Hi, thank you for your advice. It has been frustrating but I am quite used to it. Being the squeaky wheel has gotten me some prompt appointments and tests but nothing other than that.

      Whilst my current GP might not really know whats going on, she is open enough to request whatever tests that I request and will refer me to any specialist I ask for. This has been helpful as I basically asked for the EBV serology myself rather than a doctor recommending it.

      I am also seeing a GP who is a Lyme disease specialist. Not that I think that I have Lyme (although maybe a possibility), but I understand that he has experience in dealing with unusual and chronic issues.

      I will continue to be persistent and seek treatment. There is no known cure for EBV so not too sure how to tackle that outside of maintaining a healthy diet and exercising. I have read that some people with ongoing EBV issues have had success with Valaciclovir (valtrex) so if I wanted to get a prescription for that, I'm sure my GP wouldn't hesitate to at least try it.

      Thanks again for your input. I appreciate anybody who takes the time to offer suggestions to a stranger on the internet!

      • MessyG on 25/01/2017 - 14:05
        +9

        I fear that going down the Lyme pathway will result in you missing out on the real answer. There is no Lyme disease in Australia, but there's a lot of people willing to test you for it and charge you for treatment that costs a lot of money.

        • lemontree on 27/01/2017 - 17:32
          -2

          What do you mean there is no Lyme disease in Australia? It just has a low incidence here.

        • MessyG on 27/01/2017 - 18:21
          +1

          @lemontree: I am not arguing this. Here is the current consensus.

          https://www.mja.com.au/journal/2016/205/9/does-lyme-disease-…

        • captainandg on 28/01/2017 - 20:39
          +2

          @lemontree: There is no endemic Lyme disease in Australia. Borrelia burgdorferi can only reproduce inside the GIT of an Ixodes tick vector. There are no Ixodes ticks in Australia. Lyme disease is at the very bottom of the differential, and unless you've been spending time in shrub lands of northern USA, you don't have Lyme.

          OP, you haven't provided anywhere near enough history of your medical issue for anyone smart or qualified enough to help you at all. I suggest you stop asking on Ozbargain for medical advice. I appreciate that you must be at your wits end, but this is factually not the right place to discuss your medical issues.

        • lemontree on 29/01/2017 - 17:34
          +1

          @MissG: Thank you for the link, it was an informative read. I've met people who've claimed to have contracted Lymes in Australia when in actual fact they are likely being treated for "Lymes disease-like illness".

        • MessyG on 29/01/2017 - 17:38

          @lemontree: At great monetary cost to them I am sure. :(

  • [Deactivated] on 24/01/2017 - 18:41
    +1

    Just curious.. how much sleep do you think you get each night?

    • fivespice on 24/01/2017 - 23:10

      In general, between 6-8 hours. I've had some poor nights of sleep since my symptoms started.

Login or Join to leave a comment
Login Join