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ME/CFS: In Free Fall Through the Looking Glass
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Australian Specialists including Neurologists

Discussion in 'ME/CFS Doctors' started by Googsta, Apr 10, 2012.

  1. Googsta

    Googsta Doing Well

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    I need to make it clear that none of these doctors necessarily believe in ME/CFS, they treat the symptoms we experience & order testing to look for other conditions.

    Ill relay my experience with my Neurologist first & add some other doctors that have been recommended to me when I am able.
    These include an Endocrinologist to look at OI/POTS, connective issue disorders, diabetes related problems, adrenals etc.
    And the other is a Coeliac specialist, I have been told he can do some genetic testing.

    I originally saw two different Neurologists through The Alfred, through the public health system. They were very rude & arrogant toward me, suggesting I go back to my psychiatrist.
    Unfortunately for them my psych believes M.E is a physical disease. I informed them of that & refused to give in until they ordered an MRI.
    The trick is to stay calm & undeterred, you have a right to have these tests if you are experiencing neurological symptoms. Stand your ground!

    Make sure you get a personal copy of the Radiologists report from your GP. Neuros will tell you that your test was normal even if you have lesions etc. It is worth seeing someone privately at this point, it is just as slow a process but you are more likely to be sent for further testing.

    Neurologist
    Dr David Prentice
    Suite 8, Level 6
    55 Victoria Parade
    Fitzroy. VIC
    Phone: 9419 1007


    I have seen Dr Prentice for 3 years. He is based at St Vincents but can be seen at Shepparton & Werribee (expect to wait a year for a local appointment).
    Last week it cost me $120, and I redeemed $63 back from Medicare. Your initial appointment is an assessment so it takes a lot longer & will cost more, ask his secretary. He can also be seen through the public system.

    A brief history of my problems that led to me to seeing a neuro: Orthostatic Intolerance, left side facial numbness, numbness of arms/face/lips/tongue on waking.
    Based on these symptoms I was able to have the initial MRI. March 2009

    There were some white matter lesions so I decided to see Dr Prentice privately to have MS ruled out asap.
    He started me on Topamax to try to help the symptoms & ordered another brain MRI plus also a full spinal MR & also Visual Evoked Potentials (VEP)
    . August 2009

    I had a violent clonic seizure in May 2010. He ordered an EEG at my local hospital which included strobe light stimulus.

    Two more seizures in July 2010. Medication changed to Tegretol.
    Another brain MRI was ordered & I went onto a waiting list for a hospital EEG.

    I had the full week in-hospital EEG in hospital in April 2011. You stay hooked up for the entire week & have to stay near or in your bed in case of seizure. A camera records the entire time but the footage is only watched if there is an event.
    I was neither sleep or food deprived to force a seizure.

    Before I met with Dr Prentice last week I sent him an ICC brochure & some clinical study results. He hadnt had a much of a chance to look at it all but is getting used to using the term M.E as opposed to CFS or whatever you want to call it.
    He sees other M.E patients.

    I asked him about SPECT & PET scans. He said PET scans would incur a cost of approximately $1000 as they would not be covered unless you have epilepsy or cancer.
    He said SPECT is not particularly well thought of by Neurologists. If they do them they are quite particular which machine they use etc.

    He suggested trying GET as I am in a wheelchair but was respectful when I told him GET has been proven not to work for this disease.

    I see him again in late November. I dont see him very often as there seems little he can do except try different meds for nerve pain. You need to double check these prescriptions as they are not always the first choice for M.E or OI etc.

    I personally think this is a good doctor to see to rule out any other Neurological diseases & help you decide on treatment approaches. He is mild mannered & friendly.
  2. Googsta

    Googsta Doing Well

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    If someone could correct the thread title I'd really appreciate it! UGH!
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Googsta, this is my experience as well. Oz patients should think very carefully before rushing out to get scans. I'm not saying don't get them, just don't expect miracles. Try to get supportive doctors - they are about. I still can't fully explain the antipathy shown by some MDs. My doctor is not supportive of me/cfs, yet if I show him a skin cancer, he is full of concern and provides an excellent surgery. I just don't mention me/cfs.

    I saw another doctor in the same practice and casually mentioned OI. He took my blood pressure while I was sitting down and... well that's all he did. It was normal, of course.
    Allyson likes this.
  4. Googsta

    Googsta Doing Well

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    They'll all have egg on their faces one day Rusty :thumbsup:

    Have you tried contacting the ME/CFS society to find a sympathetic doctor or specialist in your area? They were able to provide me with the name of a GP who had CFS herself, unfortunately she is too expensive (my GP bulk bills).
    She charges $10 just to write a prescription (not sure if that is even legal).
  5. hixxy

    hixxy Woof woof

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    That sounds pretty common for anyone who has even a slight bit of interesting in ME/CFS. It's very unusual for your to find any GP in Australia (or anywhere else?) that has much experience with ME without looking specifically at doctors that care for a significant number of patients like us and in doing this, your cost of care increases significantly.

    Most of the ME/CFS societies in Australia refer to ACNEM or other alternative GPs. Which the cost aside, is far better than dealing with doctors who give you a completely lack of understanding.

    I have a referral for a Neurologist in 3 1/2 months (Damn waiting times!) I have extreme MCS, so will have 2 3M masks on my face when I go. I can imagine how ridiculous I am going to appear to them. Even with 2 masks on my face, I'm likely to go through deterioration just to do this trip to a Neurologist.

    It is my experience that most doctors in Australia are far behind the ball and you pretty much have to bring your own treatment ideas and plans to them, as opposed to expecting them to plan your treatment for you.

    It can be hard to get our doctors to be receptive to new treatments that they aren't aware of and most of them aren't interested in learning anything new either.
    Allyson likes this.
  6. Googsta

    Googsta Doing Well

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    All the best for your appointment Hixxy, don't take any nonsense from them ;)
    If they are any good please share them here.

    I wouldn't waste my money seeing the so-called M.E specialists we have here. Everyone I have spoken to is no more better off than me, except they have empty pockets.
  7. ramakentesh

    ramakentesh Senior Member

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    In Melbourne you can pursue OI issues with the team at the Alfred - Dr Sue Corcoran, Professor Murray Esler or Dr Gautum Vaddadi.
    A neurologist at the Monash Medical Centre named Dr Victor Gordon also looks at POTS and OI and can conduct some neurological assessments and testing to see if that is where the problem lies.
    Dr Chris O'Callaghan also sees patients with CFS, POTS, OI and dysautonomia and feels that they are all reflections of the same illness and that exercise is the most effective treatment - the more vigourous the better.
    There is also the CFS centre in Rowville with Dr Lewis who looks at more of the CFS type theories and often seems to find sodium channel abnormalities in his patients.
  8. hixxy

    hixxy Woof woof

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    I've frequently heard "sodium channel" and "calcium channel" abnormalities thrown around by ME specialists. De Meirleir in particular. What leads them to these conclusions? Pathology? Observation? Also, does it have an significance for treatment? OR is it just another load of information we have about ME that doesn't lead to much else?
  9. ramakentesh

    ramakentesh Senior Member

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    Well its almost like we have a bundle of abnormalities recorded in various literature, many of which never seem to lead to an etiology or treatment and many when treated do very little. I think the idea was that the sodium channel was excited, leading to increases CNS sensitisation of ANS or sympathetic feedback. I know of a Doc in Melb that gives out sodium channel blockers but I dont remember much success reported from patients - could be wrong thpugh
  10. hixxy

    hixxy Woof woof

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    Am I to understand that these channelopathies are likely exacerbated by sodium and calcium intake respectively?
  11. Googsta

    Googsta Doing Well

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    Has anyone seen these doctors personally? Feel free to PM if you prefer :)
    I have a long journey to see Melbourne doctors so I prefer to have an idea of their treatment approaches beforehand.
  12. taniaaust1

    taniaaust1 Senior Member

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    For Sth Australia

    Dr Del Fante is the best CFS specialist in Sth Australia (he's also been involved in Research).... the only issue is it took me 3 years to get in with him and only then it was a fluke as one cant even get onto a waiting list with him.
    He will provide symptomatic drug treatments and is great with treating POTS too.
    (unfortunately he does believe in the PACE trial and he also believes ME and CFS are the same thing).

    Dr K????? who's a CFS specialist (and researcher) and a rheumy specialist here.. Ive had one of his ME/CFS patients tell me he's only good really with treating FM and dont really offer anything as far as CFS goes, she she is seeking another doctor for the rest of the ME/CFS stuff.
    Unfortunately there is no one else ME/CFS patients can get in with in Adelaide.

    Dr John Graham (Internalist/Physician/CFS specialist) Ive been told by another patient he's now fully retired.
    I was still seeing him in his home clinic last year (semi retired then) so he wasnt insured so wasnt giving me any prescriptions so my symptoms were all untreated. No good with POTS (he only learnt about its existance from the radio late last year after not listening to me for years).

    Dr Ian Buttfield (CFS specialist and researcher) Fully retired this year. He's still doing research I think thou and is still involved in the CFS field. (CFS rather then ME)

    Dr Burnett (Endocrinologist) previously from the Royal Adelaide Hospital (CFS specialist and researcher) .. has gone bush... he's now out Whyalla or Pt Augusta way so maybe someone in one of those outback communities could benefit from him in some way. (I never saw him as a patient as such just as a study partipant for his study)

    There's two other CFS specialists in SA who have died in the past 5? years...
    I used to see Dr Kerry Callaghan (GP) who used to have a his clinic in Naine? (he had CFS himself) (He's now deceased)
    If I can think of the other who is now passed away, I'll add it too. It may save someone a search for a specialist who isnt around no more.

    There is a GP who keeps a very low profile, who sees some ME patients who are coming distances to go and see her and she knows quite a bit about our illness (not sure if she's a specialist in this or not but from what Ive heard from one of her patients I'd think her as one). She works from a Stirling/Crafers/Bridgewater clinic, somewhere out that way (Adelaide Hills).. but she wont take new patients, so one cant even get on a waiting list for her.

    That's it for ME/CFS specialists in Sth Australia (note.. many I mentioned above where part of the Adelaide CFS Research Group)

    others

    Dr Allen Gale Allergist/Physician is a good doctor for anyone with issues in the food/allergy area. He's old school and very nice. (He's cured quite a few people who had been previously diagnosed with having CFS in which it turned out to be just food issues which he fixed). He's never said anything stupid to me ME/CFS wise.

    Sue Hogan (psychologist).. not a ME/CFS specialist as such but is completely supportive and who wont say anything stupid ME/CFS wise. Someone one can go to to talk about things if doctors are being dickheads (she'll encourage one to find another doctor if that is the case).

    There is also a very supportive free counsellor (not a ME/CFS specialist) in Mt Barker (another ME/CFS person has told me about her.. cant thou currently remember her name, she could work out of one of the church orgs).


    .....

    Can we add those to really stay well away from?

    There is a few specialists (not ME/CFS ones) which I would tell people to stay away from eg the Nutritionist in Adelaide who believes we will all be cured if we just stop watching TV!!. (I'll add her name in when I think of it, she actually put that thing about TV not watching it, curing CFS patients on her report)

    GP Dr Peter Michealmore who acted very nice towards me while thinking other stuff about me and the ME/CFS. It took several years for me to finally find out he'd completely ignored what my other CFS specialist said to him about the illness being real. When I collapsed and told him his words were "well you arent disabled" (that finally made me aware of what exactly he thought). He is why it took so long for me to get any home help etc.

    Warning.. A female physio in Mt Barker who supposely specialises in ME/CFS... I got injured by following an exercise program she designed for me (when I was just starting to leave a bed bound stage and wanting to know where to start as I was very weak). She had no idea about severe ME patients. (Her intentions were good thou..she just wasnt aware how severe some of us are)
    I wont mention her name as she was nice thou she just wasnt as experienced as she thought she was with this illness, she had no understanding at all at how poor a ME persons capability can be after being bedbound for a while. Im advocating caution with her. It was a big mistake for me to go to her, when I was as bad as I was.
    ahimsa and Googsta like this.
  13. Googsta

    Googsta Doing Well

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    Sure, and thankyou for providing so many great docs :thumbsup:
  14. xrayspex

    xrayspex Senior Member

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    Googsta, doing research on topamax, why did you go off? did you feel it causes seizures? I was thinking of trying it for headaches and pain. Gabapentin sort of helped a few times, but I get weird backlash from it like it seems get worse, new pains when it wears off that concern me, like restless leg or leg pain which never had before used it or dysphagia. But sometimes its spot on but I think there is something too trick about it for my metabolism even in baby dose.
  15. Enid

    Enid Senior Member

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    I can only add my own experience of Neurological tests (brain/spinal MRI) - high spots in the brain - I had lost consciousness three times. Not MS, not Parkinsons not Polio - so what ? - he admitted he did not understand. Poss ME he thought viral. If you can find one who will take you further - well done. But we all know the pathologies (wide ranging) take more.
  16. Googsta

    Googsta Doing Well

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    I was put on Topamax because the entire left side of my face lost 80% sensation amongst other things. I don't think it caused the seizures as I would have had alot more if that were the case & I was on it quite a while. I did feel some improvement, not alot for the first few weeks but I was at a higher level of functioning then. At first I felt more clarity & increased energy (a little) but I still had the numbness, facial pain etc.
    It didn't cause any real side effects for me, so I would say to give it a go.

    There are warning indications to be aware of though, this is a good site http://www.drugs.com/tegretol.html Note it say's it may take up to 4 weeks to see results.

    Have you tried Pregabalin? http://www.drugs.com/mtm/pregabalin.html
    It can be useful to counteract high Glutamite levels also.

    Thanks Enid. I'm at a point where I have the confidence to challenge some of these doctors now & I find it is paying dividends. It's not easy but it seems to be the only way to get adequate help. Not everyone is in a position to do this for various reasons so I think it's up to everyone who IS able to take a stand :victory:
  17. hixxy

    hixxy Woof woof

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    I'm starting to believe that most of the time having an MRI is a complete waste of time. I have an appointment on 26th of July with neurologist and am reluctant to keep it. I am yet to see a single post on this whole forum of someone having a brain MRI that has actually contributed something useful to their care. Throw on top of that my severe MCS and EMF sensitivity, it just doesn't seem like a good idea anymore.
  18. Enid

    Enid Senior Member

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    Quite so hixxy - it's a wider understanding of the pathologies viral or whatever across many so called specialities in medicine they don't seem to be able to grasp. It's a whole functioning system the old bod. My brother (a Neurologist) said one thing leads to another - wish he were in the UK.
  19. Googsta

    Googsta Doing Well

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    I can empathize with you feeling that way Hixxy. The only option currently open to us is a process of elimination.

    I question the worth of having multiple MRI's, but still recommend having at least one. In a M.E study done a few years back one patient was found to have a massive growth in their head, not M.E at all.
    Peace of mind if nothing else.
  20. xrayspex

    xrayspex Senior Member

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    googsta
    thanks for the info
    I did try lyrica and it gave me headaches

    I was reading about tegretol at yr link and now I am thinking forget topamax if same warning applies--not to use if porphria. I suspect I have some sort of porphyria, am not diagnosed, never brought it up even as I dont think most docs know much about it or how to look or even care.

    I am also weirded out about mr'is now too after reading thru here as I just had one, I had a number of them for my neck between 98-01 and then cat scan of head in 06 and actually an mri of head in 04 but just had another mri of head a couple weeks ago, because of headaches and I asked my doc and he reluctantly agreed. I want to rule out ms, cancer etc but am worried now if there are lesions they dont know what they mean they will nver tell me. I havent heard anything about it cus going to go over it when go to a specialist, but wont be for awhile. I assume they would have called me if there was anything real glaring on it but I dont know. I am burnt out on dealing with the system as its so unhelpful. but have bad pain and can function enough to work some so have to find ways to keep it going but hard cus of mcs.

    anyway, I dont really want a med that I have to take every day. could topamax be taken prn? and is it risky for poryphyria like tegretol?

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