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Newbie..please help

Discussion in 'General ME/CFS Discussion' started by Mikeyboy, Sep 13, 2014.

  1. Mikeyboy



    I am new here and would like some opinions about my situation and how you would approach GP regarding moving forward.

    I am a male in my early thirties and have never suffered from any ill health apart from asthma. Suddenly at the start of June this year I started to suffer from severe fatigue and tiredness. I wake up and feel un-refreshed and constantly 'groggy'. By late morning/early afternoon I am am completely shattered and often need to take rests to get through the day. I often find that if I have to carry out physical work such as lifting a couple of boxes from my car I feel even worse later that day or even the next day.

    I travel a lot (lots of driving, typically 500-700 miles per week) and it's getting harder to continue. So far I have avoided taking any time off, but i feel like everything's getting on top of me and I am struggling to continue.

    Alongside the tiredness I noticed a slight tremor in my left hand and difficulty getting my words out. I will often be mid conversation and suddenly cannot get the words I know I want to say, out. My co-ordination has also been abnormal and I have found myself tripping over my own feet recently.

    I went to see my GP who ran some blood tests which came back completely normal. I luckily has private medical cover with work, so I was then referred to a Neurologist who arranged for an MRI Scan of my head, this came back yesterday with a normal result which has ruled out MS.

    I have another appointment with the neurologist in a weeks time to 'debrief' but I don't know what to do next. I am obviously pleased I don't have MS, but there is something going on as my symptoms are worsening and I don't have any answers. From my own research I think I may have ME, but no one (GP or Neuro) have even mentioned this condition yet.

    Sorry for the long post, but I don't have a clue how to get answers!

    Any advice would be appreciated.
  2. Sidereal

    Sidereal Senior Member

    Symptoms resembling MS and other neurological diseases can also be caused by B12 deficiency. Have you had this tested?
    MeSci, taniaaust1 and Mikeyboy like this.
  3. MikeJackmin

    MikeJackmin Senior Member

    I'm not a doc, but my understanding is that a diagnosis of CFS is only considered after six months have passed, and after everything else has been ruled out. There's not really any treatment for CFS, so hopefully you will find that you have something else instead, something that can be fixed without too much fuss.

    I'm guessing they will recomend a sleep study at some point, which would probably be an excellent idea.
    Mikeyboy likes this.
  4. A.B.

    A.B. Senior Member


    Some practical tips:

    - Make a detailed list of all your symptoms, ordered by severity. This helps communicating effectively with doctors because during the visit, you might forget a symptom or have problems finding the right words.

    - Make a list of past health problems, and health problems in relatives. Also anything that might be related to your sudden worsening of health.

    - Standard tests being normal isn't uncommon and doesn't mean much. Many conditions are not straightforward to diagnose. Since you mentioned MS, it often takes years before a diagnosis is made.

    - The immediate goal is excluding reasonably well defined conditions for which tests exist. When these have been excluded, it's time to seriously consider conditions such as ME/CFS. Sometimes doctors make mistakes, are poorly informed or just miss the obvious. If the problem is severe (which it probably is if you're posting on this forum) it's well worth getting second opinions.

    It's also important to point out that ME/CFS is most likely a label for different illnesses with similar symptoms. Try to get to the root of the problem, rather than seeking a label.
    MeSci and Mikeyboy like this.
  5. Kina


    Sofa, UK
    You might want to ask your GP for a sleep study to rule out sleep apnea.
    Mikeyboy and barbc56 like this.
  6. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    as @Sidereal mentioned, B12 could play a role. And lab work won't always show anything remarkable. I'm linking an excellent, tho scary, vid re B12 deficiency.

    Also in my signature is a compilation to Freddd's B12 protocol. You might just scroll through it, there are some other links, references at the end. Don't let the complexity scare you off, just read a few bits re B12, folate deficiencies. Godd luck in sorting this out. :hug:

    Diagnosing and Treating Vitamin B12 Deficiency‬
    Mikeyboy likes this.
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Lots of other serious illnesses can start out ME like, hence that 6mths before ME diagnoses is often a good idea. With that being said thou there are often certain abnormalities commonly found in ME which could well help to clarify a bit more if you probably do have this a bit earlier (that is IF you meet the a good actual ME/CFS diagnostic definition).

    If you havent done so already, check out the Canadian Consensus Criteria and see if you meet that http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf , if you dont, its quite likely you have something else going on here. Also in that is a list of the common testable ME/CFS abnormalities. Forget about possibly having ME at this point if you do cant meet that diagnosic criteria.

    The international ME definition also is a good one (with other definitions quite a few end up with wrong diagnoses and end up being found to have something else so best not to go by those).

    Many of us do end up having to give up driving entirely. Take care as if you do have ME and you are pushing it, you WILL make yourself worst. Take some leave at work if you can now rather then wait till you arent able to do much at all.
    NK17, Mikeyboy and MeSci like this.
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    I think it would be inappropriate for any of us to give personal advice on what you should or should not do. What I would suggest, however, is that when you see the neurologist you raise specifically the practical issue of how to manage the current situation in terms of work and life in general, whether or not there is a clear diagnosis. I know from experience that it is very easy for doctors to focus on diagnostic tests and forget the need to manage the immediate practical situation while tests are being completed.

    I would also add that diagnostic criteria are there for epidemiological and research purposes and are not intended to be used for individual patient care. Fitting a diagnostic grouping can be helpful in terms of giving advice on outlook for the future, based on what is known of others who fit the grouping, but individual aspects frequently override that. (And it is clearly illogical and unhelpful to wait until 6 months to start managing practicalities.)

    As far as I can see we have no reason to think that there is 'a disease called ME' or 'a disease called CFS' which may be why your doctors have not raised this. To my mind having CFS is belonging to a well recognised group of people who have persistent symptoms of a certain type, for which there are almost certainly several unknown causes, each of which deserves the name ME but so far has not been identified.
    rosie26, NK17 and Mikeyboy like this.
  9. stridor

    stridor Senior Member

    Powassan, Ontario
    With all due respect @Jonathan Edwards (and in your case, that is considerable), I think that it is entirely appropriate for us to dispense advice. It would be inappropriate for the recipient to follow advice without giving it the consideration that it deserves.
    The reason that it is appropriate is that there are no other options. "Dr Google" has allowed me to make huge inroads to recovery, first from Bipolar and then from CFS/hg tox. If I listened to my Drs I would still be on antipsychotics and looking forward to an early demise. I have yet to meet a Dr who has enough knowledge of mercury/mitochondria/methylation to have helped me on this little journey of mine.

    What would help is that when people give advice if they could add whether it is based on established fact/science, an educated guess/ conjecture or if it is based on their own personal experience (or of course any combination). For all of those here who have given so freely of themselves whether directly through communication with me or indirectly as I read your posts - thank-you. I am doing much better.
    helen1 likes this.
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    We have touched on this before and the moderator has confirmed that it is PR policy that individual advice should NOT be given. This seems to me particularly relevant in the context of someone who has not yet had the diagnosis of ME or CFS even mentioned to them. I am well aware that doctors do not always get things right but I am also aware that there can be all sorts of complex issues to be weighed up in an individual case that are not going to be apparent from a brief summary of symptom history. I have made bad mistakes in my time and they haunt me at night. I think it may be easy for people who are not medically qualified not to realise just how easy it is to guide somebody into a course of action that will prove disastrous. Psychotherapists probably do it all the time. We need to be sure we are not guilty of the same indiscretion - it is so easy.
    Valentijn, rosie26, daisybell and 2 others like this.

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