Australian Specialists including Neurologists

[hixxy]

An internal medicine physician on the Gold Coast tested me for porphyria, I didn't even ask for me. Not entirely sure how accurate / conclusive the testing for this is at conventional labs (QML Pathology). It was negative anyway.

How many of you have seen internal medicine doctors? I found the doctor (Dr. Mohammed Khateeb), very thorough and receptive. Not much positive came out of it though.

 

[Googsta]

googsta
I was reading about tegretol at yr link and now I am thinking forget topamax if same warning applies--not to use if porphria.
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?

I don't know of any anti-epileptics that can be taken as needed only unfortunately. In my experience they don't help with headaches, more nerve related pain.
Maybe it's worth considering an alternative like osteopathy


Hixxy, xrayspecs is in the U.S.

 

[xrayspex]

ohhh, I guess I did steal my name from a brit tho

thanks you guys

yea no magic pills without a cost true that

well hixxy I am impressed a doc lookd for porphyria w/you, i think either genetic or med or toxin induced porp could definitely tie into some sorts or parts of CFS or ME
but there is no real cure or way to make money off of it so the powers that be probly have no incentive to highlight it and docs don't think outside of the box well

 

[xrayspex]

Googsta, also I wish you luck in your search for answers and treatment, it sounds like you have a very good knowledge base from which to advocate for yourself. (Sorry if I sort of hijacked onto the medication aspect a bit there )
Tough to find help no matter what country it seems.....I haven't even gone back to my primary doc to discuss my latest MRI because I hate talking to him, he is supposed to be somewhat CFS knowledgeable and open for someone in the mainstream system but he has revealed his true thoughts to me about it at times over the years and I haven't liked what I heard...he has become irritable and dismissive at times but will usually experiment or order a test if I push but i have to go thru getting crap from him to get it which is disconcerting to me....I think part of it is the system they work in punishes them if they take their time or try to rule out a bunch of stuff or refer out etc and colleagues will disrespect them if are too sympathetic etc

I hope you get some answers, sorry for what you have been through, sounds frustrating

 

[taniaaust1]

I haven't even gone back to my primary doc to discuss my latest MRI because I hate talking to him, he is supposed to be somewhat CFS knowledgeable and open for someone in the mainstream system but he has revealed his true thoughts to me about it at times over the years and I haven't liked what I heard...he has become irritable and dismissive at times but will usually experiment or order a test if I push but i have to go thru getting crap from him to get it which is disconcerting to me....I think part of it is the system they work in punishes them if they take their time or try to rule out a bunch of stuff or refer out etc and colleagues will disrespect them if are too sympathetic etc

I hope you get some answers, sorry for what you have been through, sounds frustrating

What Ive now done is found a new doctor just out of uni who is very down to earth but also willing to please and see if you can educate one of them (the longer they've been in medicine.. the less receptive Ive found them to be about gaining new knowledge.

The one i found thou wouldnt take me on unless I was also under a ME/CFS specialist so I have him too which Im also glad of...... but hopefully with time.. I hope she'll end up educated to be of use to others with ME/CFS thou she dont have an interest in this illness, (she has her specality in as being womens health..hence i managed to finally convience her in the end to take me on..telling her that 3/4 affected by this are women) and she didnt have those precieved notions about those with ME/CFS either.. more open.

 

[Googsta]

Rakamentesh Said:

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.

I am removing Dr Chris O'Callaghan from my recommendations. I'll stick to my own experience from now on

I am wondering again about Dr O'Callaghan as he recently attended the big Melbourne conference on ME/CFS. Does anyone else have any info or updates?

Also bumping for some new Melbournians

 

[taniaaust1]

Rakamentesh Said:



I am wondering again about Dr O'Callaghan as he recently attended the big Melbourne conference on ME/CFS. Does anyone else have any info or updates?

Also bumping for some new Melbournians

Dor O.Callaghan is very well known in the field of ME/CFS and has been for years. (I've no idea thou what he is like but he'd certainly be able to give someone a diagnoses etc etc).

 

[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.

 

[Allyson]

Ramakentesh this guy was very good and also recommends staying horizontal after exercise and other times when cbvasodilated - eg after meals, inthe heat- and other treatments
like drinking salt drinks, vasoconstrictors and licorice root caps
he did not say to me the more vigrous the better but that some helps boost blood volume
and to do it in the shortest time possible;
Very good doc fo OI. POTS

Dr Chris o' Callaghan
Clinical Pharmacology
Austin hospital Melbourne
tel 94965029
fax 9496 3221

 

[Allyson]

one of those at the Alfred you mention in Melbourne is top on my list to stay away from Ramatekesh so others beware

she told me it was psychosomatic and the cure was to "get up every day for 3 weeks and have a hot shower and stay up all day"
as god is my witness!
This is depite my dignosis of ME by 2 other ME specialists

i saw her though at caulfield or hawthorn not the alfred
caveat emptor
would now want anyont to go through what i did with S C
one of the WORST medical experiences of my life
you might want to take her name off that list

 

[Allyson]

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.

had a very bad experience with one of those docs who claimed she was "not a cf person" and insulted and abused me so i would not recommend this team

 

[Allyson]

Highly recommend this guy in Melbourne Aust for IBS gluten lactose intol and ceoliac
He has invented a vaccine against coeliac disease and is working on one for gluten intol
super smart and a lovely guy
http://www.wehi.edu.au/clinical/cli...stitute/clinician-scientist_dr_jason_tye-din/

 

[Allyson]

Chris O' callaghan Melbourne
yes I have seen him and found him excellent

 

[Allyson]

In Melbourne you can pursue OI issues with the team at the Alfred - Dr Sue Corcoran, Professor Murray Esler or Dr Gautum Vaddadi.

quote]
i had a very very bad experience with one of these so i would beware of recommending them !!!!!!

 

[taniaaust1]

Does anyone know of a doctor in SA or even anywhere in Australia... who would be able to help me more for POTS? (I think Im probably needing Saline IVs... is there any doctor in Australia willing to help me with this and possibly these?).

Dr Del Fante in Sth Australia, since the start of the year has been trying to treat me for the POTS but Ive only had 25%-30% improvement with medical support stockings, flornif etc and he's today told me there is nothing else he can do for it as he dont believe my blood volume can be boosted any further with meds. (so I think he thinks I will just need to keep living with this and this small improvement)

The POTS is still bad enough to have me completely collapsing with 5-10mins standing, so hence I still cant leave my house alone (the POTS and my dysfunctional bowel.. are currently my two worst symptoms). This symptom is isolating me as it means I cant go visit people etc .. nearly all my friends.. I havent been able to see for years due to this.

On top of that.. I have to put up with the embarrassment of collapsing in public places (this week I had a collapse on the footpath in front of the chemist I'd just gone to). This is something I WANT CHANGED. I NEED this issue more treated. I dont want to be living like this when this symptom may be completely treatable.

Please can someone tell me if there is anyone in Australia who could help me more with treating the POTS and would be possible prepared to have me doing saline IVs? Its upsetting knowing there is more which could be being done for me but treatment I cant right now get.

(Im going to take in info to Dr Del Fante next time I go on saline IV treatment for severe POTS, seeing it appears and he believes meds arent going to help me much after the POTS drug trial.. and try again with him..
but I doubt if Im going to have any luck as Im sure he would of already heard of this possible treatment and obviously just doesnt want me trialing that cause otherwise I think he would of suggested it). So I guess im going to have to some how find another doctor willing to do more with that symptom.

My other question IF there are NO doctors in Australia willing to help someone who has severe POTS get saline IVs.. does anyone know if it is possible for me to get the bags of 1L saline.. over the pharmacy counter without a script??.

If I cant find a doctor who can help (I cant travel alone to physically see one interstate).. I will have no choice but to go ahead and try to teach myself how to do IVs myself if I can get the gear.. when I really dont have a clue what Im doing (sighs.. even i have to order the saline IV bag from overseas).

I think I can get the right needles for the IV at the needle exchange place and only today seeing I was already in city seeing specialist, I got myself taken to the needle exchange place and looked at their section of needles and grabbed some which I think may be the right ones for doing this (25Gx3/4 winged infusion set.. Ive no idea if that is correct or not.. Im just going by it simply looks like it may do something like that).

So now i suppose I just need the saline IV and also the tubing to attach the saline bag to the needle part? (confused how the flow would be adjusted? so going to have to try to find out online or does the thickness of the tubing which is attached close to the needle, determine the saline flow?).

I know people arent allowed to advise but without help or advise or finding a doctor to help.. Im going to possibly be in more danger if someone dont advise. Please please Im begging someone to advise me cause it appears this may be the only thing I can do to help myself seeing I have no doctor to try to help the POTS further. (this may also help my severe orthostatic BP issues too).

Its cruel to be left with issues which could poissibly be fixed.

Thanks

 

[heapsreal]

Does anyone know of a doctor in SA or even anywhere in Australia... who would be able to help me more for POTS? (I think Im probably needing Saline IVs... is there any doctor in Australia willing to help me with this and possibly these?).

Dr Del Fante in Sth Australia, since the start of the year has been trying to treat me for the POTS but Ive only had 25%-30% improvement with medical support stockings, flornif etc and he's today told me there is nothing else he can do for it as he dont believe my blood volume can be boosted any further with meds. (so I think he thinks I will just need to keep living with this and this small improvement)

The POTS is still bad enough to have me completely collapsing with 5-10mins standing, so hence I still cant leave my house alone (the POTS and my dysfunctional bowel.. are currently my two worst symptoms). This symptom is isolating me as it means I cant go visit people etc .. nearly all my friends.. I havent been able to see for years due to this.

On top of that.. I have to put up with the embarrassment of collapsing in public places (this week I had a collapse on the footpath in front of the chemist I'd just gone to). This is something I WANT CHANGED. I NEED this issue more treated.

Please can someone tell me if there is anyone in Australia who could help me more with treating the POTS and would be possible prepared to have me doing saline IVs? Its upsetting knowing there is more which could be being done for me but treatment I cant right now get.

(Im going to take in info to Dr Del Fante next time I go on saline IV treatment for severe POTS, seeing it appears and he believes meds arent going to help me much after the POTS drug trial.. and try again with him..
but I doubt if Im going to have any luck as Im sure he would of already heard of this possible treatment and obviously just doesnt want me trialing that cause otherwise I think he would of suggested it). So I guess im going to have to some how find another doctor willing to do more with that symptom.

I would do it for you but i live to far away, bugger.

 

[taniaaust1]

thanks anyway heapsreal.. your post made me smile. Thanks

 

[caremom]

Does anyone know of a doctor in SA or even anywhere in Australia... who would be able to help me more for POTS? (I think Im probably needing Saline IVs... is there any doctor in Australia willing to help me with this and possibly these?).

Dr Del Fante in Sth Australia, since the start of the year has been trying to treat me for the POTS but Ive only had 25%-30% improvement with medical support stockings, flornif etc and he's today told me there is nothing else he can do for it as he dont believe my blood volume can be boosted any further with meds. (so I think he thinks I will just need to keep living with this and this small improvement)

The POTS is still bad enough to have me completely collapsing with 5-10mins standing, so hence I still cant leave my house alone (the POTS and my dysfunctional bowel.. are currently my two worst symptoms). This symptom is isolating me as it means I cant go visit people etc .. nearly all my friends.. I havent been able to see for years due to this.

On top of that.. I have to put up with the embarrassment of collapsing in public places (this week I had a collapse on the footpath in front of the chemist I'd just gone to). This is something I WANT CHANGED. I NEED this issue more treated. I dont want to be living like this when this symptom may be completely treatable.

Please can someone tell me if there is anyone in Australia who could help me more with treating the POTS and would be possible prepared to have me doing saline IVs? Its upsetting knowing there is more which could be being done for me but treatment I cant right now get.

(Im going to take in info to Dr Del Fante next time I go on saline IV treatment for severe POTS, seeing it appears and he believes meds arent going to help me much after the POTS drug trial.. and try again with him..
but I doubt if Im going to have any luck as Im sure he would of already heard of this possible treatment and obviously just doesnt want me trialing that cause otherwise I think he would of suggested it). So I guess im going to have to some how find another doctor willing to do more with that symptom.

My other question IF there are NO doctors in Australia willing to help someone who has severe POTS get saline IVs.. does anyone know if it is possible for me to get the bags of 1L saline.. over the pharmacy counter without a script??.

If I cant find a doctor who can help (I cant travel alone to physically see one interstate).. I will have no choice but to go ahead and try to teach myself how to do IVs myself if I can get the gear.. when I really dont have a clue what Im doing (sighs.. even i have to order the saline IV bag from overseas).

I think I can get the right needles for the IV at the needle exchange place and only today seeing I was already in city seeing specialist, I got myself taken to the needle exchange place and looked at their section of needles and grabbed some which I think may be the right ones for doing this (25Gx3/4 winged infusion set.. Ive no idea if that is correct or not.. Im just going by it simply looks like it may do something like that).

So now i suppose I just need the saline IV and also the tubing to attach the saline bag to the needle part? (confused how the flow would be adjusted? so going to have to try to find out online or does the thickness of the tubing which is attached close to the needle, determine the saline flow?).

I know people arent allowed to advise but without help or advise or finding a doctor to help.. Im going to possibly be in more danger if someone dont advise. Please please Im begging someone to advise me cause it appears this may be the only thing I can do to help myself seeing I have no doctor to try to help the POTS further. (this may also help my severe orthostatic BP issues too).

Its cruel to be left with issues which could poissibly be fixed.

Thanks

Hi taniaaust1,

I think a 25Gx3/4 winged infusion is too small to sustain a 500ml bag of normal saline infusion. You'll need a cannula with a proper IV infusion set which has a roller clamp to control the speed of infusion. Dr L's nurses in Melbourne
gives IV infusions in his clinic. If you have been given written permission to self administer IV infusion, I am most willing to help you set it up at home, except that I'm in Melbourne

Pray that you'll find a solution real soon.

 

[taniaaust1]

thanks greatly for your post caremom. I know now not to try it like that seeing that wouldnt work.. if i can get the other things I need.

Unfortunately if the doctor was willing to give me permisson.. I wouldnt be in the situation I are in now as Im sure he then would of arranged too for me to be taught how to do (or for the RDNS to come in and do it for me).

If I can find good backup support online to take to him.. maybe I can get him to agree (unfortunately havent found anything which he may necessarily listen to) .

Im going to make sure next time I see him that he is very aware to what extent Im prepared to go to if it brings improvement to me. I really wish I could get interstate and get to Dr Lewis but I need a support person with me to be able to do that.

 

[taniaaust1]

or if there is any doctor or researcher out there who knows Dr Del Fante in Adelaide.. could someone please tell him there is more options in treating POTS then florinef.... Maybe a researcher or medical person could convince him not to give up on fixing it in me.
(He's a good doctor but I cant be content unless we've tried all we can to fix it.. I dont want to just give up on getting better).