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12 Years Undiagnosed...

Discussion in 'General Symptoms' started by jbone, Jul 26, 2016.

  1. jbone


    Okay, please forgive the extensive length of this post, I've tried to chronicle my symptoms from first onset for the purposes of giving a broad picture.

    UK, Male - 27


    - Headaches
    - Bouts of flu like fatigue + vertigo 2-4 weeks
    - 'Blurry' vision
    - leaden limbs + vertigo + blurry vision (i now think this is derealisation)
    (Each period lasted 2-6 weeks mostly around periods of stress or illness)

    - Mumps Year10 (Post onset of the first bout of above)

    Tests 2000 - 2005

    - Neurologist - Benign Fasciculation Syndrome
    - Cardiologist - Good left ventricle ejection, pronounced sinus arrhythmia, bradycardia (insignificant), ectopic beats (Insignificant)
    - CT Scan - Inconclusive
    - MRI (2002) - Clear
    - EMG - Clear/fasics
    - Adrenal test - Normal
    - All blood test Normal
    - CK - Extremely High
    - MD - hypothesised cfs, never received the diagnosis as i began to recover i was however sent to CFS specialist.
    - CFS Specialist


    Suffered periods of intense fatigue, blurry vision (derealisation?), fasiculations, sweating, anxiety, ectopic beats, visual auras, weakness, leaden limbs (feeling like i can’t move/ feel like more of an effort to connect with limbs in order to move)

    The majority of the time i just felt generally unwell, slightly fever some & sweaty on little exertion. During all the periods listed above i was in an out of the gym, lifting weights, high intensity swimming, rugby apart from the period where i fell ill and then it would take a month or 2 to recover to a state where i could build my exercise up again


    Ophthalmologist - Diagnosed with silent migraines
    ENT - Mildly inflamed sinus

    Professional Career

    I finished university in 2013 after 5 years (didn’t have to take any major time off) and started work at a firm in London. 1st Year was ok i had period of illness mainly flu fever sensations that would persist for a couple of weeks, maybe had one or two days off but then in March 2015 after a few months of late nights and weekends of overtime at work i fell ill. Symptoms:
    • Heavy fatigue
    • Blurred vision
    • Mild headaches
    • Brain fog
    • Sweating / Poor heat control
    • jerks & fasciculation’s all over but majority in calfs
    • heavy right arm & right leg, perceived foot drop
    • at odd periods throughout the day i would feel choked
    • Waking at 4am without fail but falling back to sleep
    • hyperactive nerves i.e. if something brushed me i would jump
    • Adrenaline sensation/feeling on edge
    • feeling faint
    • exercise intolerance i.e. muscles easily fatigued
    • dry cough on left chest
    • emotional


    Vit D (mildly low), full blood count (normal), calcium (low), HIV (Clear), diabetes (Clear), hepatitis (Clear), liver function (high bilirubin), BP (Borderline High).

    MD Diagnosed - Gilbert Syndrome
    Cardiologist - Good ejection fraction, Bicuspid Valve, ectopic beats, Severely dilated left + right atrium (Later corrected by consultant Cardiologist to normal…apparently there was an recording error)

    CFS Specialist St Barts, London - I met Dr Murphy the consultant and specialist at Barts who suggested that he didn’t particularly think it was CFS however he was willing to commit me to the program there at Barts to try and make some recovery. I believe he felt i didn’t fit the criteria mainly due to my explanation of PEM. Up until the point in time where i began work i was able to exercise fairly confidently however 6 months prior this full collapse i developed periods of sweating and tiredness the following day which i put down to over training. However these symptoms became more severe reducing the amount of exercise i could complete. This continued to progress gradually until i had my crash.

    MD prescribed Citalopram, Pregabolin, Amitrip, Venlafaxine, Prosac all of which had little to no effect on symptoms. Depression was suggestly unlikely however they felt anxiety could be a contributer/ cause.

    6 Weeks after this period i somewhat recovered maybe to 70% and felt that i had to return to work. For the next 9 months i progressed along fairly well, i didnt return to the gym as i felt to unwell to: tired, feverish and slightly dizzy, couldn’t read screen particularly well but i was swimming, socialising. Work then ramped up again, i took on a part time university course which was adding pressure as well needless to say i crashed. I can chronologically list the symptoms in which they occurred:

    - 2 Nights working until 2am
    - Arm + Leg feel heavy
    - fasciculation’s increase
    - start waking at 3am
    - 3 days later my vision becomes blurry (derealisation)
    - i struggle read words on screen
    - mild headaches
    - i start to feel more and more tired in the morning
    - In turn i increase my evening rest, coming home from work to sleep in my lunch break
    - i start sweating and feeling feverish
    - I’m irritable, emotional, feel like i can’t cope
    - Feel like i can’t move
    - Brain fog sets in
    - Adrenaline sensation
    - feel like I’m going to collapse legs don’t have the energy

    Fast forward 4.5 months and I’m here, still off work. I can struggle through a half hour swim, i can do 20 pushups, i can walk 2km. The fatigue is present on commencing and doesn't increase excessively after completion, i could repeat the following day at a push.


    • blurry vision with derealisation
    • waking at 3am + waking at the slightest sound, i am able to fall back asleep
    • mild headaches
    • exercise intolerance
    • PEM (not to the point where i feel i have full blown flu, i just can’t stay awake)
    • trouble brushing teeth i.e. arm feels fatigued
    • trouble reading screen…light sensitivity?
    • fasciculation’s/spasms
    • sweating/fever
    • slight agoraphobia
    • energy depletes very quickly at that point i feel drained, legs go weak, dizziness sets in
    • constant fatigue (level doesn’t really change drastically)
    • tight hamstrings (when fatigue is higher)
    • No muscle pain, no sore throats, slightly swollen lymph node in right side of neck (no soreness),

    Im due to see Neuropsychiatrist this week, MD thinks anxiety has a large part to play, I’m willing to accept that except for the past 4 months I’ve been having CBT, meditating, doing yoga and nothing has changed.

    So, I’m here. Im fed up of the rigmarole of seeing physicians only to be palmed off to another whilst they decide what to do with me. I understand this community is a support network and not somewhere for which an individual like myself can achieve a diagnosis, that being said i would like to hear opinions on my case. I feel M.E is still a potential diagnosis despite what Dr Murphy has said, i also believe that an engrained anxiety or stress could also be a diagnosis, i just find that harder to believe considering I’ve spent the past 4 months doing stress/anxiety relieving practices with little or no results.

    I apologise for the lengthy post & i understand everyones minds are stressed to the limit with this illness but when/if you have a moment i would appreciate your ‘2 cents’.

    Effi likes this.
  2. daisybell

    daisybell Senior Member

    New Zealand
    Why do the doctors think anxiety is your issue when you haven't identified that as a major issue yourself?
    My two cents is that ME should be considered as a possible diagnosis. If that is so, then you're probably over-exerting yourself physically and in your shoes, I would try doing much less aerobic exercise for several weeks at least, and see if I felt better for that. Anyway, good luck with it all!
    Valentijn likes this.
  3. CCC

    CCC Senior Member

    Have you ever followed up on the low calcium?

    Our doctor said that blood calcium is tightly regulated. If it ever goes out of range, then you really are in deep trouble.

    (Could be something to do with the hypothalmus, but I can't remember because our levels were okay so I didn't need to retain the information.)
  4. Strawberry

    Strawberry Senior Member

    Seattle, WA USA
    LOL, is Barts part of the PACE/GET religion? PEM is key symptom of CFS.

    @jbone Do you have chronic sore throat? Some of your symptoms sound like orthostatic intolerance too.
  5. Sea

    Sea Senior Member

    NSW Australia
    Welcome to the forum jbone. Was your high CK during a period of intense exercise, or during an episode of weakness? Was there any muscle pain associated with it?

    A high CK can occur after intense exercise, but it can also be an indication of muscle damage due to various illnesses. A category of genetic enzyme deficiencies would be good to rule in or out. Look at Fatty Acid Oxidation disorders (eg MCAD, CPT1 or 2, LCHAD, VLCAD, GA2). These are rare and many doctors have not yet seen any patients with one of these disorders. Most of them are now tested for on newborn screening but you are old enough that you probably weren't screened for these as an infant. There are severe versions which have resulted in infant deaths but there are also milder versions which don't show up until adulthood or until the body is otherwise compromised by metabolic stress (fasting, illness, fever, strenuous exercise)
  6. Tammy

    Tammy Senior Member

    New Mexico
    Get tested for EBV.
  7. cfs6691


    Since you have high bilirubin can you ask your doctors to have a liver biopsy performed?I suspect that my CFS is undiagnosed liver damage caused by medication but since your symptoms are different(since I became sick every movement has been a struggle ,exercise is out of the question) viruses(such as EPB) can also cause liver damageDavid H Adams Stefan G Hubscher AM J Pathol Apr 2006;168(4):1057-1059.I am also going to give you 2 references regarding the unreliability of blood tests in diagnosing liver damage a)Ricketts W E Pathological liver with minimal or no change in liver tests Am J Med Sci 1951 Mar 22:(3):p 291""Liver tests within normal range are not synonymous with the abscence of liver pathology a point not sufficiently emphasized...Approximately one-tenth of the normal parenchyma is able to carry on adequate function."" b)Zamcheck N Sidman R LNeedle Biopsy of the Liver-its use in clinical and investigative Medicine The New England Hournal of Medicine Dec 1953 Vol 249 No25 p 1022""In every hospital there are patients whose serious illness remains undiagnosed despite prolonged clinical and laboratory study.There may be no clinical findings to suggest liver disease.Yet liver biopsy,performed even in the abscence of hepatomegaly,has proved useful in such cases."'I can provide more Information regarding why I think some CFSsufferers may have undiagnosed liver disease( such as similarities in symptoms and epidemiology between CFS and liver disease,the underresearched role of the liver in detoxifying chamicals and in inflammation processes )if you are interested.
  8. cfs6691


    I don't know how those emojis found their way in the text I just posted.My keyboard doesn't have keys for emojis.Please ignore them.This hasn't happened to me before.

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