Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Darla, I would think that it would be wise to investigate these issues. It does sound like an autonmic issue. With one with mito and possibly yourself, I would think to be proactive is the way to go. I am in the same boat with my youngest. She has weird issues and if she didn't have a sis and mom (probable) with mito we might not be concerned. My theory is this, until they tell me it's not mito then I can never be really comfortable. We are seeing a genticist for the whole family to see what the link is. I am hoping to get some answers. I hope you do too!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Darla, I would think that it would be wise to investigate these issues. It does sound like an autonmic issue. With one with mito and possibly yourself, I would think to be proactive is the way to go. I am in the same boat with my youngest. She has weird issues and if she didn't have a sis and mom (probable) with mito we might not be concerned. My theory is this, until they tell me it's not mito then I can never be really comfortable. We are seeing a genticist for the whole family to see what the link is. I am hoping to get some answers. I hope you do too!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Darla, I would think that it would be wise to investigate these issues. It does sound like an autonmic issue. With one with mito and possibly yourself, I would think to be proactive is the way to go. I am in the same boat with my youngest. She has weird issues and if she didn't have a sis and mom (probable) with mito we might not be concerned. My theory is this, until they tell me it's not mito then I can never be really comfortable. We are seeing a genticist for the whole family to see what the link is. I am hoping to get some answers. I hope you do too!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Darla, I would think given the familial connection, that checking with Dr. Whiteman would be a good thing to do. I am so sorry! The unknowns and uncertainties that come along with the Mito Dx are very hard to grapple with. It is very difficult to remember that each of our children is a unique individual, connected, yet different in many ways. Many on the list can testify to the many variations the disease can present with. It's a frustration and sometimes a source of comfort. I can't imagine how difficult it must have been for you to listen to the " growing list of concerns " (yours not his) as Luke was sharing with you. You have been through much with Asenath and if you are anything like me, it's as if our response can be only one way- hyper alert-emergency. I have found that my body reacts as if every illness is an emergency now. " BREATH! " I have to tell myself. A fever doesn't require the vigilance it use to, for us now. Long way of saying, I know you are highly concerned about Luke, try to ---- I can't think of anything to say that isn't some trite cliche. Pray,trust,hug & love. Blessings, Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Darla, I would think given the familial connection, that checking with Dr. Whiteman would be a good thing to do. I am so sorry! The unknowns and uncertainties that come along with the Mito Dx are very hard to grapple with. It is very difficult to remember that each of our children is a unique individual, connected, yet different in many ways. Many on the list can testify to the many variations the disease can present with. It's a frustration and sometimes a source of comfort. I can't imagine how difficult it must have been for you to listen to the " growing list of concerns " (yours not his) as Luke was sharing with you. You have been through much with Asenath and if you are anything like me, it's as if our response can be only one way- hyper alert-emergency. I have found that my body reacts as if every illness is an emergency now. " BREATH! " I have to tell myself. A fever doesn't require the vigilance it use to, for us now. Long way of saying, I know you are highly concerned about Luke, try to ---- I can't think of anything to say that isn't some trite cliche. Pray,trust,hug & love. Blessings, Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Darla, I would think given the familial connection, that checking with Dr. Whiteman would be a good thing to do. I am so sorry! The unknowns and uncertainties that come along with the Mito Dx are very hard to grapple with. It is very difficult to remember that each of our children is a unique individual, connected, yet different in many ways. Many on the list can testify to the many variations the disease can present with. It's a frustration and sometimes a source of comfort. I can't imagine how difficult it must have been for you to listen to the " growing list of concerns " (yours not his) as Luke was sharing with you. You have been through much with Asenath and if you are anything like me, it's as if our response can be only one way- hyper alert-emergency. I have found that my body reacts as if every illness is an emergency now. " BREATH! " I have to tell myself. A fever doesn't require the vigilance it use to, for us now. Long way of saying, I know you are highly concerned about Luke, try to ---- I can't think of anything to say that isn't some trite cliche. Pray,trust,hug & love. Blessings, Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Darla; Just thought I'd mention that these symptoms that Luke describes are some of my early symptoms and I have a diagnosis of Mito. Given Asanath's Mito and your probable Mito, I think I would be considering that Luke's symptoms are likely indicative of Mito. I think that discussing this with Dr Whitemant sounds like a plan since starting him on supplements early may stabilize him as you likely are thinking! Jean Darla Klein wrote: I have been talking to my 15 year old son more about the sensory issues he seems to be having this past year. He mentioned today that he often has intense burning in his legs as well as temperatures that are strange. When others are warm he says he can be freezing and shakes because of it and other times he can be frying (his words) when others are cold. He says at night he has to sleep in his shorts only because if he wears clothes to bed he will wake up soaked. He can't use a blanket even. His room is very cool because it is a basement room without a heater. The nearest heater is in the next room. These plus lack of feeling in his extremities have me concerned. He still has tons of energy thankfully, but could these be signs of a metabolic imbalance or disautonomia issues? I am thinking of giving Dr. Whiteman a call to see if we can schedule Luke for a visit. Darla: mommy to Asenath Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 I appreciate the note from you . I want to jump on these issues to help him not become worse but am not as worried as I could be due to my past experiences of my own come and go symptoms as well as my daughter Leah's symptoms. She has the exercise intolerance, heat intolerance issues mostly. Dr. Whiteman did tests on her and said overall she was fine currently. Her muscles were a little low toned and he knew that her future may hold more Mito issues, and just today she was telling me how climbing the stairs has been quite hard at times and makes her very weak with collapsing legs. This and other of her symptoms sound so familiar to me. She has many of the same problems as I have had since 1990. But now to here Luke too has symptoms that I also have had it is frustrating to know he too may have problems as he gets older. I didn't get bad until I was 20 so I know they may get worse as they get older too. I keep telling them not to worry that they will ever be as bad as Asenath, especially with her vasculitis. I hope they aren't becoming too worried. I try to downplay it some as teenagers can really get worried about these things. Luke doesn't want to see the doctor but is willing to go if it may help. I am just wondering if it will reveal anything. I was surprised Leah's tests didn't show more issues as she struggles so frequently with energy/muscular issues. Well, I gotta go. My hubby just got home. Thanks again for your concern and for responding to me. THAT GOES FOR EVERYONE ELSE AS WELL!!! Darla: mommy to Asenath Re: burning legs ?'s Darla,I would think given the familial connection, that checking with Dr.Whiteman would be a good thing to do.I am so sorry! The unknowns and uncertainties that come along with theMito Dx are very hard to grapple with. It is very difficult to remember that each of our children is a uniqueindividual, connected, yet different in many ways. Many on the list cantestify to the many variations the disease can present with. It's afrustration and sometimes a source of comfort. I can't imagine howdifficult it must have been for you to listen to the "growing list ofconcerns" (yours not his) as Luke was sharing with you. You have beenthrough much with Asenath and if you are anything like me, it's as if ourresponse can be only one way- hyper alert-emergency. I have found that mybody reacts as if every illness is an emergency now." BREATH!" I have totell myself. A fever doesn't require the vigilance it use to, for us now.Long way of saying, I know you are highly concerned about Luke, try to---- I can't think of anything to say that isn't some trite cliche.Pray,trust,hug & love.Blessings, LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 My daughters and myself also have alot of these problems. As far as the burning legs my oldest daughter, healthy so far, keeps complaining of leg tremors and how they hurt at night. I think I am going to call her ped and run a metabolic panel, just in case. Also I have heard that low blood sugar will cause night sweats. This was true for Grace. The cornstarch at night has really helped her to sleep better. I also have never been diagnosed, but even Cohen thinks I also have mito. But your sons symptoms sound very close to mine. I am a very cold person, it can be 70 degrees outside and I need a jacket and long pants. It usually is worse when my iron is low. If I take an iron supplement daily it usually helps. I very frequently sweat during the night. It really is a pain because during the day I am freezing, wearing sweats and a blanket. But as soon as I go to bed I am on fire. Hope some of this will at least lead you in a direction. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 My daughters and myself also have alot of these problems. As far as the burning legs my oldest daughter, healthy so far, keeps complaining of leg tremors and how they hurt at night. I think I am going to call her ped and run a metabolic panel, just in case. Also I have heard that low blood sugar will cause night sweats. This was true for Grace. The cornstarch at night has really helped her to sleep better. I also have never been diagnosed, but even Cohen thinks I also have mito. But your sons symptoms sound very close to mine. I am a very cold person, it can be 70 degrees outside and I need a jacket and long pants. It usually is worse when my iron is low. If I take an iron supplement daily it usually helps. I very frequently sweat during the night. It really is a pain because during the day I am freezing, wearing sweats and a blanket. But as soon as I go to bed I am on fire. Hope some of this will at least lead you in a direction. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 My daughters and myself also have alot of these problems. As far as the burning legs my oldest daughter, healthy so far, keeps complaining of leg tremors and how they hurt at night. I think I am going to call her ped and run a metabolic panel, just in case. Also I have heard that low blood sugar will cause night sweats. This was true for Grace. The cornstarch at night has really helped her to sleep better. I also have never been diagnosed, but even Cohen thinks I also have mito. But your sons symptoms sound very close to mine. I am a very cold person, it can be 70 degrees outside and I need a jacket and long pants. It usually is worse when my iron is low. If I take an iron supplement daily it usually helps. I very frequently sweat during the night. It really is a pain because during the day I am freezing, wearing sweats and a blanket. But as soon as I go to bed I am on fire. Hope some of this will at least lead you in a direction. Good luck. Quote Link to comment Share on other sites More sharing options...
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