Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Thanks and for you replies. I will try and chase that up and maybe get a bit more help. I was diagnosed in Adelaide in 1998 and my Dr was Dr. Waddy (she was ok but prefered not to really take on the case) My Neuro in Melbourne is at St s and is very up with Mito cases, maybe it is just me!having hit my brick wall.... Hugs Wanda (Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Wanda I'm sorry you are so frustrated. I have been there and know the feeling. Do you need a perscription for supplements in OZ? If not, you could at least start on the first tier. I wouldn't suggest this, but you seem like you need to feel like you have some control over what is happening to you. There are a couple of mito specialists in OZ - one in the north and one in the south I believe. My neuro is in contact with one of them. I will try to figure out who they are - might take me until next week. laurie > > > > > > > Hi everyone, > > I was just needing to talk to you all re: my latest Neurologist appt > on Tuesday. I came out feeling very discouraged, during the appt I > asked all my questions that I had gathered since our last time > together and basicaly all I got was blank answers. > She sat there and when asked if anything else could be done to help me > at the moment, she just said well no cos we have a confirmed diagnosis > by biopsy etc and now we just treat the symptoms when they come up!! > She said to Tony my husband that I really needed looking after amost > full-time now and just go home and I will see you in 6 months.. > I had done so much research on supplements and helping all my symptoms > that when I asked she said oh no we leave them alone I think. > > What do I do now!! > She is my only Doctor apart from my GP(who doesn't know a thing about > Mito). Trying to accept that this is how I am going to be for a while > is overwhelming. My daughter came with us also to talk about Genetic > Counceling, reluctantly she wrote a referral to someone for us to see. > I am gradually reducing my Lyrica to get off it because of the side- > effects. Maybe this drug is why I have so much anxiety about the > future!! > Sorr to vent so badly, but you are the people that understand this > Mito monster. > Hugs > Wanda (Australia) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 For adults there is Assoc Prof Caroline Sue, in Sydney (mid east coast) - am interested to know who is the one in the south you know about over there Laurie. pamela Re: Venting after Neuro appt Wanda I'm sorry you are so frustrated. I have been there and know the feeling. Do you need a perscription for supplements in OZ? If not, you could at least start on the first tier. I wouldn't suggest this, but you seem like you need to feel like you have some control over what is happening to you. There are a couple of mito specialists in OZ - one in the north and one in the south I believe. My neuro is in contact with one of them. I will try to figure out who they are - might take me until next week. laurie > > > > > > > Hi everyone, > > I was just needing to talk to you all re: my latest Neurologist appt > on Tuesday. I came out feeling very discouraged, during the appt I > asked all my questions that I had gathered since our last time > together and basicaly all I got was blank answers. > She sat there and when asked if anything else could be done to help me > at the moment, she just said well no cos we have a confirmed diagnosis > by biopsy etc and now we just treat the symptoms when they come up!! > She said to Tony my husband that I really needed looking after amost > full-time now and just go home and I will see you in 6 months.. > I had done so much research on supplements and helping all my symptoms > that when I asked she said oh no we leave them alone I think. > > What do I do now!! > She is my only Doctor apart from my GP(who doesn't know a thing about > Mito). Trying to accept that this is how I am going to be for a while > is overwhelming. My daughter came with us also to talk about Genetic > Counceling, reluctantly she wrote a referral to someone for us to see. > I am gradually reducing my Lyrica to get off it because of the side- > effects. Maybe this drug is why I have so much anxiety about the > future!! > Sorr to vent so badly, but you are the people that understand this > Mito monster. > Hugs > Wanda (Australia) > > Quote Link to comment Share on other sites More sharing options...
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