Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 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 2, 2006 Report Share Posted July 2, 2006 Wanda, I am so sorry to hear that you aren't being given the help you need. I don't know how health care works for you there, but is trying a different neuro an option? I see on the web that Australia has an MDA branch, but their website seems to be down. did this neuro say who on earth supplements weren't a good idea? wandaramsdell wrote: > 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) > > > >------------------------------------------------------------------------ > >No virus found in this incoming message. >Checked by AVG Free Edition. >Version: 7.1.394 / Virus Database: 268.9.8/380 - Release Date: 6/30/2006 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 > have you posted on the mitoaussie list??? perhaps someone there can direct you to a neuro who might be helpful. i think the group has about 59 members on the list. ken > 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 2, 2006 Report Share Posted July 2, 2006 Wanda, We get meds from out primary care doc. He doesn't understand mito but he does care. I'd suggest that you do your research and then ask the primary to write scripts. Are you on the cocktail? It can help but it doesn't make you feel the way you did before you got sick. You still progress but it's more slowly. We do these meds. Carnitor, coC10 (fatigue), riboflavin (migrianes), vitamin with iron (stabilizes hemoglobin and hematocrit for my son), selenium, niacinimide, vitamin B-12 (stabilizes mood for son when using very large doses), lamictal (absence seizures, migraine), neurontin (migraine, neuropathy), prevacid (GERD), gastrochrom (eosinophilia), etc. You could get doses of mito cocktail off the umdf site. At the conference this year, somebody spoke and said that your docs don't really have to know mito they just have to give a hoot. I agree that that's far more important than understanding mito. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 What is umdf? and you got a link for it? Cody From: Van Verst To: @...: Sun, 2 Jul 2006 06:41:50 -0700 (PDT)Subject: Re: Venting after Neuro appt Wanda,We get meds from out primary care doc. He doesn'tunderstand mito but he does care. I'd suggest that youdo your research and then ask the primary to writescripts. Are you on the cocktail? It can help but itdoesn't make you feel the way you did before you gotsick. You still progress but it's more slowly.We do these meds. Carnitor, coC10 (fatigue),riboflavin (migrianes), vitamin with iron (stabilizeshemoglobin and hematocrit for my son), selenium,niacinimide, vitamin B-12 (stabilizes mood for sonwhen using very large doses), lamictal (absenceseizures, migraine), neurontin (migraine,neuropathy), prevacid (GERD), gastrochrom(eosinophilia), etc. You could get doses of mito cocktail off the umdfsite. At the conference this year, somebody spoke andsaid that your docs don't really have to know mitothey just have to give a hoot. I agree that that's farmore important than understanding mito.Mom to the two best kids in the world!http://www.caringbridge.org/visit/thomasandkatie__________________________\ ________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Here is the link to UMDF. It stands for the United Mitochondrial Disease Foundation. http://umdf.org/ L . E. Cody wrote: > What is umdf? and you got a link for it? Cody > From: Van Verst [mailto: tbnkatie@... > ]To: @... > : Sun, 2 Jul 2006 06:41:50 > -0700 (PDT)Subject: Re: Venting after Neuro appt > > Wanda,We get meds from out primary care doc. He doesn'tunderstand mito > but he does care. I'd suggest that youdo your research and then ask > the primary to writescripts. Are you on the cocktail? It can help but > itdoesn't make you feel the way you did before you gotsick. You still > progress but it's more slowly.We do these meds. Carnitor, coC10 > (fatigue),riboflavin (migrianes), vitamin with iron > (stabilizeshemoglobin and hematocrit for my son), > selenium,niacinimide, vitamin B-12 (stabilizes mood for sonwhen using > very large doses), lamictal (absenceseizures, migraine), neurontin > (migraine,neuropathy), prevacid (GERD), gastrochrom(eosinophilia), > etc. You could get doses of mito cocktail off the umdfsite. At the > conference this year, somebody spoke andsaid that your docs don't > really have to know mitothey just have to give a hoot. I agree that > that's farmore important than understanding mito.Mom to the two > best kids in the > world!http://www.caringbridge.org/visit/thomasandkatie__________________________\ ________________________Do > http://www.caringbridge.org/visit/thomasandkatie_______________________________\ ___________________Do> > You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection > around http://mail.yahoo.com http://mail.yahoo.com> > > > _______________________________________________ > Join Excite! - http://www.excite.com http://www.excite.com> > The most personalized portal on the Web! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Hi Wanda My name is I am from Darwin NT Australia I am new to all this but I do know n Melbourne there is a Paediatrician named Dr Thorburn and he is on some of the Mitochondrial internet pages I have seen previously overseas, he has an interest in Mito. He is conducting my daughters second muscle biopsy staining at MCRI. My daughters doctors in Adelaide rang him to see if it was worth redoing the muscle because of my symptoms and next thing they started the process again. First time results were Borderline Normal seen some changes mind you she was only 10mths at the time. If you rang his offices and asked if they knew of an adult doctor specialising in Mito they might be able to give you a name. Also the doctors organising my daughters tests are Metabolics so it may pay to inquire at the Metabolic clinics in the hospitals near you. I understand frustration with Neuro's mine says I look nothing like his other two families that have MELAS, but still cannot diagnose me. Different people different progressions. Good Luck but do chase up that doctor and ring Metabolics clinics to see. If no luck still I can get you a brilliant doctor in Adelaide to see Dr Janice Fletcher Metabolics Specialist. Best of Luck Cheers wandaramsdell jordyalan@...> wrote: 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) Send instant messages to your online friends http://au.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 --- " L . E. Cody " lecody@...> wrote: > What is umdf? and you got a link for it? UMDF= United Mitochondrial Disease Foundation www.umdf.org Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.