Australian Specialists including Neurologists

[Googsta]

News on Dr David Prentice, Neurologist (see first page for details).
Another patient went to see Dr Prentice last week & had mixed results.
He did prescribe Endep (Amitrypytylene) & ordered a brain MRI.

However, he also asked whether they had seen a psychiatrist since their diagnosis. It's difficult to say why he asked that obviously, without being there personally. It is a typical question though with neuro's (in my experience), I would like to think they ask their MS patients the same thing but probably not .
They did agree he is a mild-mannered & friendly fellow, not the type to rip into you at least.

So I guess anyone considering him needs to weigh it all up & decide what is best for them. I was able to reassure him I'd seen a psychiatrist so that may have made the differance in my case?
Either way, I am glad I had my MRI's as it continues to help me with other doctors.

 

[taniaaust1]

However, he also asked whether they had seen a psychiatrist since their diagnosis. It's difficult to say why he asked that obviously, without being there personally. It is a typical question though with neuro's (in my experience), I would like to think they ask their MS patients the same thing but probably not . .

As much as I dont like it, I can understand it as after all in MS there are tests for diagnoses.. with us, its guess work and ruling things out. Going to a psych would help rule out mental health issue causing the symptoms, so it is a fair enough thing for a specialist to ask.

 

[Allyson]

I would also like to try normal saline IV infusions and regular oxygen. DPL is giving them in Melbourne and also magnesium infusions.
Has anyone tried them and had success please?
It seems to me they are easy, safe treatments that could decrease your down time.
In hospitals they are given ALL the time - are the most common treatments and extremely safe; why are we not being offered them I wonder.

 

[Art Vandelay]

Does anyone know of a good, CFS-sympathetic endocrinologist in Adelaide? Dr Burnett is the only CFS-aware one I know of but I hear that is no longer at the RAH or in Adelaide.

 

[Fred1234567]

'I've found that Australian doctors go to the NICE Guidelines from the UK as a cheat sheet!!!! I take the ICC and Canadian Guidelines and give them a copy...the ME/CFS support group based in Victoria will help anyone from any part of Oz and is a great resource. I have also been giving out copies of the DVD Voices from the Shadows which has changed a few minds. Unfortunately I have also agreed to exercise when I've felt that it was the only way to get the drugs/treatment I've wanted...(sorry). Australia has similar problems to the UK - a powerful physiatrist Ian Hickie, Neurologists that say they don't believe in ME/CFS....but there are pockets of light and good doctors that will listen and learn with you.

Go Norway and the USA you are saving the world!!!

 

[Fred1234567]

I would also like to try normal saline IV infusions and regular oxygen. DPL is giving them in Melbourne and also magnesium infusions.
Has anyone tried them and had success please?
It seems to me they are easy, safe treatments that could decrease your down time.
In hospitals they are given ALL the time - are the most common treatments and extremely safe; why are we not being offered them I wonder.

 

[Fred1234567]

Yes I am on both and they help me!!!! My GP gave me a prescription for oxygen and I hire an oxygen concentrator. I can tell when I am topped up with oxygen and don't need anymore. The oxygen helps stave off the crashes, reduces neurological symptoms e.g. spine tingles/shocks, painful finger tips, changes my face from grey to normal. I take oxygen on arrival at hospital clinics etc....

I am on regular IV saline infusions the first GP to give them to me did not see how they could help but gave it anyway and was amazed by the positive results. Magnesium for the IV can be bought (need a script) it is about $20 for $20 vials. The actual saline 1 litre is $5, the giving set $8 ish and the needle $2. All GP's should be able to give IV's (not that they are all comfortable doing so) as in an emergency they may need to hydrate someone this also means that they all will have the gear at their clinic. Be wary of the cost of "integrative/alternative health practitioners" but that is where I started as it was very easy I had a modified Myers cocktail that I immediately felt better from and my tachycardia dropped 30 bpm- I then did some research and found it was the saline that was giving me the immediate positive effect. See Vanderbilts current study into the effect of saline IV's on POTS. All doc offices can also do an ECG - if you have POTS ask for one standing after they do the lying down one. My lying down one is normal- standing up shows tachycardia!!!
The saline immediately reduces tachycardia, clears brain fog, improves circulation etc but you do need it frequently as it does not last. I wonder giving how effective it is what damage is being done without it!!! Specialists don't seem phased by IV saline and see it as low risk you will pee out any excess. Tried sub cutaneous saline and it was not at all effective - just in case you get offered that the cardiologist explained that it is the instant increase in volume of the blood vessels that is the most helpful.

I just want to stay well enough to try rituximab and maybe valomaciclovir if I can find someone to prescribe them.

 

[Fred1234567]

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.

I had one MRI to rule out a weird cancer tumour and MS. I was very noisy and I went grey but as soon as I got back home started on oxygen and returned to normal colour.... I've not been recommended to have any more MRI's and would need a lot of convincing of the benefits of having another one??? Could the neurologist be convinced the Rituximab was worth trying and send you off to an oncologist/rheumatologist....??? This is an avenue I'm trying???Trying!!!

 

[Allyson]

Yes I am inclined to agree Fred; i think the theory is that some of us with ME show white plaques on the basal ganglia and other areas of the brain, similar to thosse seen in MS.
they show up on autopsy on ME patinets too.
So I think if no one is testing us we may have them and no- one knows - better have the test now if you can have a non invasive one..... but i think it needs to be a Spect scan which IS invasive.
I have not had one as I am sick of drs at the moment but have an appt with a neurologist and would consider one down the track.....will try anything now basically
thanks indeed for the post on oxygen and n saline drips.
did you find it hard to organise the oxygen concentrator? i am haveing trouble with that.

 

[Allyson]

oh I see it is hixxy s post ia m agreeing with; could they not give you oxygen DURING the MRI to stop you going grey? Noise would be a porblem for me. how noisy was it please?

 

[GcMAF Australia]

Does anyone know of a good, CFS-sympathetic endocrinologist in Adelaide? Dr Burnett is the only CFS-aware one I know of but I hear that is no longer at the RAH or in Adelaide.

Hi
Don Lewis http://www.cfsdiscovery.com.au/
seems to be a good CFS doctor
hope it helps

 

[taniaaust1]

Dr Don Lewis isnt in Sth Australia but one of the other states.. (He's in Melbourne I think it is). I wish he was in Adelaide, I'd be seeing him otherwise.

 

[Tony]

Hi Tania, you could try and get your doc to speak with Dr Chris O'Callaghan who specialises in OI and knows a bit about ME/CFS. He's spoken at several ME/CFS conferences here in Melbourne.

Address: 455 Upper Heidelberg Road, Heidelberg, VIC 3084, PH: 94592699

Just to add the correction re an earlier post, he does NOT believe that exercise is for all. I've heard from a few ME/CFS patients that he's excellent, uses more than florinef etc.

"Our clinical pharmacologist, the amusing Dr Chris O’Callaghan spoke on Orthostatic Intolerance in isolation…ie; not specifically how it relates to CFS but what it is and why it happens and what can be done about it. As it is a major symptom for many CFS sufferers the talk was received with interest. Since we have already spoken in depth with Dr O’Callaghan there wasn’t much new here for us. He did however state categorically that exercise does NOT help all OI sufferers. (I think he said 50/50 but I can’t be sure)"
http://parentingcfs.wordpress.com/2012/05/05/mecfs-awareness-week-2012-seminar-melbourne/

On another point regarding a sodium channelopathy many patients including myself who have used the anti seizure drug lamictal have found it excellent for headaches if that channelopathy is part of the problem.

 

[taniaaust1]

Hi Tania, you could try and get your doc to speak with Dr Chris O'Callaghan who specialises in OI and knows a bit about ME/CFS. He's spoken at several ME/CFS conferences here in Melbourne.

Address: 455 Upper Heidelberg Road, Heidelberg, VIC 3084, PH: 94592699

Just to add the correction re an earlier post, he does NOT believe that exercise is for all. I've heard from a few ME/CFS patients that he's excellent, uses more than florinef etc.

"Our clinical pharmacologist, the amusing Dr Chris O’Callaghan spoke on Orthostatic Intolerance in isolation…ie; not specifically how it relates to CFS but what it is and why it happens and what can be done about it. As it is a major symptom for many CFS sufferers the talk was received with interest. Since we have already spoken in depth with Dr O’Callaghan there wasn’t much new here for us. He did however state categorically that exercise does NOT help all OI sufferers. (I think he said 50/50 but I can’t be sure)"
http://parentingcfs.wordpress.com/2012/05/05/mecfs-awareness-week-2012-seminar-melbourne/

On another point regarding a sodium channelopathy many patients including myself who have used the anti seizure drug lamictal have found it excellent for headaches if that channelopathy is part of the problem.

Thanks for that. Do you know if he's willing to support saline IVs if the other POTS meds havent worked or not working well? My latest POTS trial drug is a failure as far as POTS goes (clonidine).. Im still on Florinef thou which helped some (nearly doubled the extremely low level I was able to do.. its still way low thou.. 3 hrs (broken down time) on feet in 24 hours on a very good day isnt no where near enough).

I have tried lamictal..and had a very bad reaction to it on my other ME/CFS symptoms. It made me far more disabled. (I have coexisting MCS so do react badly to many drugs)

 

[taniaaust1]

Sth Australia. Ive that GP Dr David Mitchell at Waterfull Gully sees CFS patients (his speciality is apparently hormones and MTHFR polymorphims). Ive booked in to see him but its currently a 5mth wait to get in.

I finally got to see Dr David Mitchell. He's quite different to any of the other specialists Ive seen so far and first doctor Ive seen who is focused on treating the causes of the symptoms rather then just the symptoms.

From what I could tell he seems to think that CFS is just a mix of various untreated things all coming together to form the symptom complex one has so he may not believe in ME (he wouldnt give the illness any kind of name and just said all that was important was what was going wrong in the body). I found his manner rather abrupt at times to the point I found him a wee bit upsetting (he rudely cuts one off at times so I'd have to say he hasnt got a great patient manner) but he does have a great sense of humor.

I took in all my abnormal test results (He said I should of taken in EVERYTHING) and from those abnormal test results he found NINE!! different issues I have but hadnt been diagnosed or have and doctors havent treated properly (wrong treatments which didnt end up helping eg my other specialist had put me onto the wrong supplements for my MTHRF polymorphism.. normal folate instead of active folate which is needed etc etc).

He explained abnormalities I have which other specialists were confused what was going on... Dr Mitchel seems very brainy and intellegent. I cried as I was overwhelmed with relief as he was the first exceptionally intellegent doctor Ive come across who was up to date with many things. I came home and looked up some of the things he'd told me online and found the info he was telling me is correct.

He unfortunately thou completely ignored me when I told him I have POTS and cut me off (I dont know if he even knows what it is). He then told me I shouldnt drink so much and when I told him I need to, to keep my POTS symptoms down and from affecting me too bad (I get very quickly affected otherwise when upright).. he ignored that and just repeated I should cut back on how much I drink. I told him drinking helps me.. and he goes "well how do you know that?" even when I'd told him it helps my symptom.. His manner left me at loss how to keep trying to explain so I ended up giving up.. he wasnt going to listen...

So anyway... this is my experience with this doctor.. both good and bad points. I do think he's going to be great thou at helping me with the things he understands. (I wouldnt be surprised thou if this doctor ends up making me quite upset over that he doesnt listen).

 

[GcMAF Australia]

I hope he helps you Tania!!!

 

[Allyjbrown]

Im going to try to see Dr mark Donohoe in sydney i have seen him before and is suppose to be the best in oz for cfs/me...but besides that idont know what else to do..im hoping my gp does know a lot more than his letting on..i find it frustrating cause i would love a dr i cold see reguraly that is a-close by-b just a gp so it dosent cost a leg and an arm!

 

[Art Vandelay]

I finally got to see Dr David Mitchell. He's quite different to any of the other specialists Ive seen so far and first doctor Ive seen who is focused on treating the causes of the symptoms rather then just the symptoms.

From what I could tell he seems to think that CFS is just a mix of various untreated things all coming together to form the symptom complex one has so he may not believe in ME (he wouldnt give the illness any kind of name and just said all that was important was what was going wrong in the body). I found his manner rather abrupt at times to the point I found him a wee bit upsetting (he rudely cuts one off at times so I'd have to say he hasnt got a great patient manner) but he does have a great sense of humor.

...

He unfortunately thou completely ignored me when I told him I have POTS and cut me off (I dont know if he even knows what it is). He then told me I shouldnt drink so much and when I told him I need to, to keep my POTS symptoms down and from affecting me too bad (I get very quickly affected otherwise when upright).. he ignored that and just repeated I should cut back on how much I drink. I told him drinking helps me.. and he goes "well how do you know that?" even when I'd told him it helps my symptom.. His manner left me at loss how to keep trying to explain so I ended up giving up.. he wasnt going to listen...

So anyway... this is my experience with this doctor.. both good and bad points. I do think he's going to be great thou at helping me with the things he understands. (I wouldnt be surprised thou if this doctor ends up making me quite upset over that he doesnt listen).

Hi Tania

Glad you got in to see Dr Mitchell. As you found, he can be a bit abrupt at times. When I mentioned the possibility of POTS to him, he also got quite unenthusiastic about it so it seems this is an avenue of inquiry he doesn't pursue.

That said, he is very passionate and motivated in keeping up with the latest research into CFS/ME. There have been times when I've disagreed with him over treatment approaches, but he's at least listened to my point of view.

I find that being positive, upbeat and focussed when I walk into his office (even though it is hard to do when you're sick and means I'm exhausted afterwards) tends to ensure that my appointments with him start off on the right foot.

Hope he can help you!

Art

 

[taniaaust1]

Yeah passionate and motivated (in the things which interest him about it) is certainly a good way to describe him. If I avoid mentioning POTS (which unfortunately is my worst and most disabling ME symptom), things probably will be fine.

Thanks for the tip.
....

For anyone wondering (as I dont remember if I said this already or not)... Its a 5mth wait to get in with him but other then that, he's not hard to get in with.

 

[Sherrie]

Tania, did you end up getting help with the saline drip?

I am wondering if it would be worth asking Dr Baratosy as he does do Vitamin C drips so maybe he will be open to it?

Such a shame about the Dr in Nairne, I always wondered where he went, I used to live in Nairne and would walk past his place all the time and remember it up for sale when I started to relapse, bad timing!