Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 I hope everyone is OK and that you weren't effected by the cyclone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Ditto Janet Sample Aussie Friends I hope everyone is OK and that you weren't effected by the cyclone. Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Thanks Janet, we are all ok here. I live in the south east corner of Australia and it was north Queensland that got it. We are having beautiful weather at the moment, its a pity I cant move to get out in it .....Stay safe yourself. Regards Wanda > >Reply-To: >To: > >Subject: Re: Aussie Friends >Date: Mon, 20 Mar 2006 21:09:29 -0600 > >Ditto > >Janet Sample > Aussie Friends > > > I hope everyone is OK and that you weren't effected by the cyclone. > > > > > Medical advice, information, opinions, data and statements contained >herein are not necessarily those of the list moderators. The author of this >e mail is entirely responsible for its content. List members are reminded >of their responsibility to evaluate the content of the postings and consult >with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one >is automatically moderated or removed depending on the severity of the >attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Nice of you to ask Janet - the cyclones are up in the tropical northeast, in a small not highly populated area. I'm also more south, in Sydney (however I think we have some mito people up in Queensland somewhere). We don't seem to have the same number of cyclones though that you regularly experience over there. (Wanda are you in Sydney?) pamela Aussie Friends > > > I hope everyone is OK and that you weren't effected by the cyclone. > > > > > Medical advice, information, opinions, data and statements contained >herein are not necessarily those of the list moderators. The author of this >e mail is entirely responsible for its content. List members are reminded >of their responsibility to evaluate the content of the postings and consult >with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one >is automatically moderated or removed depending on the severity of the >attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi Pamela, I am in Lakes Entrance in . I haven't spoken to anyone here in Australia yet, so it was nice to get your message. Having this disease here in Australia makes you feel very alone, America seems to have so much more in the way of Mito doctors etc. What is it like in Sydney? Stay safe Wanda > >Reply-To: >To: > >Subject: Re: Aussie Friends >Date: Thu, 23 Mar 2006 08:44:32 +1100 > >Nice of you to ask Janet - the cyclones are up in the tropical northeast, >in a small not highly populated area. I'm also more south, in Sydney >(however I think we have some mito people up in Queensland somewhere). We >don't seem to have the same number of cyclones though that you regularly >experience over there. (Wanda are you in Sydney?) pamela > Aussie Friends > > > > > > I hope everyone is OK and that you weren't effected by the cyclone. > > > > > > > > > > Medical advice, information, opinions, data and statements contained > >herein are not necessarily those of the list moderators. The author of >this > >e mail is entirely responsible for its content. List members are >reminded > >of their responsibility to evaluate the content of the postings and >consult > >with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends >one > >is automatically moderated or removed depending on the severity of the > >attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Me too - sorry to hear you are so debilitated at the moment. I hope there is someone good looking after you. I know there is a lab in Melbourne at St s which does mito testing but I don't know about mito experts in Vic. Here in Sydney we have a v knowledgeable research scientist/med doctor named Assoc Prof Caroline Sue. She is at Royal North Shore Hospital in the Neurogenetics lab. She is the only expert in NSW at least, who sees adult patients (there is a Dr Christodolou at Westmead Children's Hospital who sees children only). She has worked with Dr DiMauro in the US so is pretty up to scratch with everything, and also undertakes some groundbreaking research of her own. Anyone can see her with a referral from another doctor (usually a neurologist) if they send their referral in and are prepared to wait several months. She gives a one hour first appt then orders a ream of tests including muscle biopsy, nerve conduction studies, EEG, MRI brain for lactate, cardiac & GI referrals etc, depending on your symptoms, then follows up 3-4 mths later with the results. Prof Sue also organises a special 12 wk exercise program run by the Physiotherapy Dept at the hospital, to test exercise threshhold levels and prescribe a therapeutic regime for individual mito patients. I haven't been through that yet but am looking forward to taking part (my kids early 20's are also taking part). Dr Sue has told me that the right type of mild aerobic exercise can improve energy levels in mito. If you would like to keep in touch directly Wanda my email is pamelama33@.... Re: Aussie Friends Hi Pamela, I am in Lakes Entrance in . I haven't spoken to anyone here in Australia yet, so it was nice to get your message. Having this disease here in Australia makes you feel very alone, America seems to have so much more in the way of Mito doctors etc. What is it like in Sydney? Stay safe Wanda Quote Link to comment Share on other sites More sharing options...
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