Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Rose, you can go to www.egroups.com and sign in with yahoo...... Then pick on Graves_support, and go digest, or even show that you'll read from the website where you wont' be bombarded with emails. Once you get to the homesite, just click on edit my membership and find the do not send email, and click on it, then hit okay. Have a great trip! :-) Sandy~Houston On Wed, 17 Sep 2003 09:15:17 -0700 (PDT) Rose Erisman wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2003 Report Share Posted October 5, 2003 Terribly sorry for the slip-up, this was a personal email. I'm not an egroup newbie, I know better *g* >, > >Many thanks for the information. I think you story hit home the hardest. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 , I am glad that I can help you and others like you! Makes my heart sing and makes all of my pain worthwhile! Thank you for your kind words! god bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Crystal, You are quite welcome. We are here for ya, as well as those on Mediboard. Best thing you can do is try to stay calm, and have some faith that you will feel better soon. The hyper brain tends to be a bit more anxious sometimes, so when your levels come down, you should feel more relaxed in general. Do some deep breathing, or whatever else works. Stress is bad for us, and is a known trigger for GD. Learning about what you are dealing with also helps, but no rush to learn everything all at once, so you needn't overwhelm yourself. It will all come into focus in time. Tip of the day: As far as diet goes, avoid iodine. We hypers should be getting less than 150mcg iodine per day. We do need some, but since the American diet typically has an excess of iodine, you will be getting enough even if you avoid the high iodine sources. Iodized salt is bad, and there are other sources that are high, such as kelp/seaweed, seafood, and dairy. 450mgs PTU/day is a bit high (were your Free T's really high to start?), with the average starting dose being about 300. You might want to get labs in 3 weeks, especially if you are feeling tired or sloooow (or other symptoms of hypO/overmedication). Let us know how you do. At 11:34 PM 10/15/2003, you wrote: >Thank you , > Your letter helped a lot. I`ve never been this >scared before... even when I came face to face with a >bear on a woodland road,last spring! I feel a little >better now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Thank you for the information, the doctor he sees is in London Ontario at University Hospital. I will look into the doctors you suggested. Currently I believe his doctor is a neuologist not a mito doc but I could be wrong. I will try your idea of typing calling all canadians. It is tough when no one including doctors seem to know what to do with him. He is currently trying to get on TPN to gain some weight. Thanks again, > Hi , > > Where in Ontario are you guys located? I'm originally from Niagara Falls. > There are some mito docs in Hamilton at McMaster (Dr. Mark Tarnopolsky) and > also some in Toronto but I can't remember the names. There is a big mito group > in Montreal that I could find you info about. Thats where my biopsies went a > while back. There are others from Ontario in our groups. I would suggest > typing a new e-mail and putting " calling all Canadians " in the subject line. You > might get more responses. There are two groups for adults with mito also; > and adultmito that I would suggest joining. Mitoldies can be joined > the same way you joined the mito group. I think you need an invitation for the > adultmito that we could get you if interested. I don't know much about MNGIE > but you will be able to get alot of support and information from these groups. > We also have chats on the MDA site on Monday evenings at 9:00. Feel free to > join us. If you have more questions feel free to ask. Thats what we are > here for. > > S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Wyatt is allergic to morphine also. It was a horrible experience. I'm glad things are going better. Geri-Anne and Wyatt, Complex I > > To those of you who had such kind words to say thank you. It is a > hard journey to go through and I don't know what the next step will > be. I just know I must keep going and sometimes that is all I am > able to do. > > Oh and we found out the hard way the my precious Elijah is allergic > to Morphine. He had a horrible reaction and we almost lost him. > Today all is well and he is back to his normal. > > Now it is 2:34am and I should have been in bed a long time ago. > > God Bless you all Goodnight > > Ann- Mommy to precious Elijah(Leigh's)2-15-03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 Grace had very "weird" bloodwork, this is what actually made them look at mito. I don't remember all the levels of everything and even what all was off. I do remember her liver enzymes were at a point they thought she was going into failure. All of her metabolic panels were off, but not consistant with anything known. Dr. Cohens (her mito doc) first bloodwork included Carnitine levels. This was the first thing that came back really low, wich made him pretty sure it was mito. Since her diagnosis and cocktail her bloodwork is pretty normal. The only thing that is ever off anymore is her blood sugar (consistantly low.) Hope this is what you were looking for. With MSN Hotmail's Photo Upload Tool preview and edit pictures before you email them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 I know I have written once before but wanted to add that we have had lots of weird lab results. I think it goes along with the Mito territory. Most docs don't have a clue as to understanding why the labs say what they do and how to treat the patient when they read the labs. Acid levels being off, carnitine deficiency, COQ10 deficiency, ketosis issues, Ion gap issues, on and on... You need to find the right metabolic doctor to treat your family who WILL be able to understand the labs! See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (17)migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (15 months) SID, dev. delays, right hemiparesis issues... thank you > > > i just want to thank all of you who wrote in response to my first > post. i have been walking through this journey since justin was 2 but > htere are just days when i feel like i just need a break. i do > remember to take time out for myself and my older son. i know that > my faith has kept me going too. > > however i am curious if others have experienced lab work done onyour > loved ones at times just didn't make any sense and also had doctor's > totally baffled and how it finally made sense to look at mito. i am > still trying to figure out how to make sense of all of this. thank > you again. karen > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 Hi , Our 11 yr. old son has a mito disorder, and there are baffling times and frustrating times. Some tests will be normal, yet he is struggling with something, and other times he will seem okay and something will be really off. Some days we have to remember that he even has mito, and other days it's looking really bad. I would just encourage you to learn as much as you can, it will be needed to educate doctors and teachers and family. Also don't hesitate to post if you have a question or just want to vent, as we all know well how this affects the family dynamics. Not everyone has the same issues, and some have a lot of issues in common, there is always alot of help to try or just an understanding ear. Take care, Jonikarenbrbkr wrote: i just want to thank all of you who wrote in response to my first post. i have been walking through this journey since justin was 2 but htere are just days when i feel like i just need a break. i do remember to take time out for myself and my older son. i know that my faith has kept me going too. however i am curious if others have experienced lab work done onyour loved ones at times just didn't make any sense and also had doctor's totally baffled and how it finally made sense to look at mito. i am still trying to figure out how to make sense of all of this. thank you again. karenPlease contact mito-owner with any problems or questions. Yahoo! Messenger Show us what our next emoticon should look like. Join the fun. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Tracie, Thank you, two of closest friends here are both ill themselves, one is a brittle diabetic and in and out of the hospitals with BS of 400 or more, the other has Graves Dx, and has had problems since her thyroid was destroyed, and we laugh when ever we say hey call me if you need anythingJ the one with diabetes was just in the hospital and I went up to see her,(it is just hard to walk into the hospital where I worked for a long time, I don’t go to L & D) anyway she mentioned that the other friend had not been up to see her, and I told her that she has not been feeling well, she seems to get a lot of little things like colds and they knock her for a loop, anyway we still all try to be there for each other that’s what friends are for. When people hear how “rare” this disease is the ask if I have a support group locally, and I feel good inside when I can say, yes there in my office and are the most wonderful friends a person could ever want, you all are to me the best of the best in friends, Thank you, and blessings to all, Marl a Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer@... www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Wednesday, October 24, 2007 8:30 PM To: Neurosarcoidosis Subject: Re: i love this response Marla, You are one of the strongest women I know. You've come such a long ways, and now that you need (literally) the support-- it is so wonderful to hear that others are willing to help you. We do work with what we've been given, and somedays-- we find ourself wishing that we weren't trusted with all that we've been given.... My chiropractor said it best-- " The strongest person is the one that is willing to say I can't do this alone... " Love to you, Tracie See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Tracie, Thank you, two of closest friends here are both ill themselves, one is a brittle diabetic and in and out of the hospitals with BS of 400 or more, the other has Graves Dx, and has had problems since her thyroid was destroyed, and we laugh when ever we say hey call me if you need anythingJ the one with diabetes was just in the hospital and I went up to see her,(it is just hard to walk into the hospital where I worked for a long time, I don’t go to L & D) anyway she mentioned that the other friend had not been up to see her, and I told her that she has not been feeling well, she seems to get a lot of little things like colds and they knock her for a loop, anyway we still all try to be there for each other that’s what friends are for. When people hear how “rare” this disease is the ask if I have a support group locally, and I feel good inside when I can say, yes there in my office and are the most wonderful friends a person could ever want, you all are to me the best of the best in friends, Thank you, and blessings to all, Marl a Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer@... www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Wednesday, October 24, 2007 8:30 PM To: Neurosarcoidosis Subject: Re: i love this response Marla, You are one of the strongest women I know. You've come such a long ways, and now that you need (literally) the support-- it is so wonderful to hear that others are willing to help you. We do work with what we've been given, and somedays-- we find ourself wishing that we weren't trusted with all that we've been given.... My chiropractor said it best-- " The strongest person is the one that is willing to say I can't do this alone... " Love to you, Tracie See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Happy Birthday Marla!!! KatCreate a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Create a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Happy Birthday Marla!!! KatCreate a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Create a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Hi Marla- i must of missed your birthday so i want to wish u the best and hope that u have a great day- Take Care, MATTThank you everyone for the wonderful Birthday greetings, You are all so very special to me, a special family who understands what we are going through, I love you all, Marla -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Hi Marla- i must of missed your birthday so i want to wish u the best and hope that u have a great day- Take Care, MATTThank you everyone for the wonderful Birthday greetings, You are all so very special to me, a special family who understands what we are going through, I love you all, Marla -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Thank you Matt! Marla Hi Marla- i must of missed your birthday so i want to wish u the best and hope that u have a great day- Take Care, MATT Thank you everyone for the wonderful Birthday greetings, You are all so very special to me, a special family who understands what we are going through, I love you all, Marla -- -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Thank you Matt! Marla Hi Marla- i must of missed your birthday so i want to wish u the best and hope that u have a great day- Take Care, MATT Thank you everyone for the wonderful Birthday greetings, You are all so very special to me, a special family who understands what we are going through, I love you all, Marla -- -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Thanks Kat, mb Happy Birthday Marla!!! Kat Create a Home Theater Like the Pros. Watch the video on AOL Home. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Thanks Kat, mb Happy Birthday Marla!!! Kat Create a Home Theater Like the Pros. Watch the video on AOL Home. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Hi all Sorry it took me so long to get back to those of you who answered my post about my son wanting to try some protein powder. Thank you for your wisdom and encouraging words. Just to update on my son's decision to do the SCDiet...he's still not on board. So what I've been doing is trying to be a lot more conscious of what I am feeding him here at home. I know that what I give him is better for him and yet I've become discouraged by his response to the food. I am seeing that because he is not on the diet and openly accepting it that he's also not open to trying new things. I think it'll be a long process of changing the palette as well as convincing him that this is the best choice for managing his disease. I feel like I want to cry. I want this so much for him and he's not having it. I guess I'm the one that needs to let it go-for now. :-) So, I just had to vent for a bit and say thank you for your help and Maybe I'll be back to ask some more questions when we're actually doing the diet. :-) Take care everyone-God Bless you all Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Hi all Sorry it took me so long to get back to those of you who answered my post about my son wanting to try some protein powder. Thank you for your wisdom and encouraging words. Just to update on my son's decision to do the SCDiet...he's still not on board. So what I've been doing is trying to be a lot more conscious of what I am feeding him here at home. I know that what I give him is better for him and yet I've become discouraged by his response to the food. I am seeing that because he is not on the diet and openly accepting it that he's also not open to trying new things. I think it'll be a long process of changing the palette as well as convincing him that this is the best choice for managing his disease. I feel like I want to cry. I want this so much for him and he's not having it. I guess I'm the one that needs to let it go-for now. :-) So, I just had to vent for a bit and say thank you for your help and Maybe I'll be back to ask some more questions when we're actually doing the diet. :-) Take care everyone-God Bless you all Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Sherry, Don't take his decisions personally. It's hard enough to deal with this as an adult- let alone a teen. He feels different and angry enough at being different, and he does not want to eat differently too. It's just easier for him to let it out on you and reject the diet at the moment. Don't let the diet become a power struggle or wedge between you. Let it go, but let him know it is available. He knows he needs your love and support right now. Who knows- he may come back to it later. Focus on feeding him healthy foods. If the dinner table becomes a war zone, that won't work. I'm also a parent of teens and it is really hard sometimes learning what to insist on and what to let go of. We don't have much control over what they eat at this point. PJ > > Hi all > > Sorry it took me so long to get back to those of you who answered my post about my son wanting to try some protein powder. Thank you for your wisdom and encouraging words. > > Just to update on my son's decision to do the SCDiet...he's still not on board. So what I've been doing is trying to be a lot more conscious of what I am feeding him here at home. I know that what I give him is better for him and yet I've become discouraged by his response to the food. I am seeing that because he is not on the diet and openly accepting it that he's also not open to trying new things. I think it'll be a long process of changing the palette as well as convincing him that this is the best choice for managing his disease. I feel like I want to cry. I want this so much for him and he's not having it. I guess I'm the one that needs to let it go-for now. :-) > So, I just had to vent for a bit and say thank you for your help and Maybe I'll be back to ask some more questions when we're actually doing the diet. :-) > > Take care everyone-God Bless you all > > Sherry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Sherry, Don't take his decisions personally. It's hard enough to deal with this as an adult- let alone a teen. He feels different and angry enough at being different, and he does not want to eat differently too. It's just easier for him to let it out on you and reject the diet at the moment. Don't let the diet become a power struggle or wedge between you. Let it go, but let him know it is available. He knows he needs your love and support right now. Who knows- he may come back to it later. Focus on feeding him healthy foods. If the dinner table becomes a war zone, that won't work. I'm also a parent of teens and it is really hard sometimes learning what to insist on and what to let go of. We don't have much control over what they eat at this point. PJ > > Hi all > > Sorry it took me so long to get back to those of you who answered my post about my son wanting to try some protein powder. Thank you for your wisdom and encouraging words. > > Just to update on my son's decision to do the SCDiet...he's still not on board. So what I've been doing is trying to be a lot more conscious of what I am feeding him here at home. I know that what I give him is better for him and yet I've become discouraged by his response to the food. I am seeing that because he is not on the diet and openly accepting it that he's also not open to trying new things. I think it'll be a long process of changing the palette as well as convincing him that this is the best choice for managing his disease. I feel like I want to cry. I want this so much for him and he's not having it. I guess I'm the one that needs to let it go-for now. :-) > So, I just had to vent for a bit and say thank you for your help and Maybe I'll be back to ask some more questions when we're actually doing the diet. :-) > > Take care everyone-God Bless you all > > Sherry > Quote Link to comment Share on other sites More sharing options...
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