Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Dear Sheila, I am so sorry that you received this confirmation. I truly believe that those of us who feel our emotions very deeply go through a type of grieving process each time we're faced with a definite diagnosis of something which we realized (in the back of our minds) might be a possibility. I went through that when my daughter developed uveitis in 2001, and then again, whenever I'm faced with the reality that she has "failed" some medications and will probably need to move on to something stronger. Please know that if I could reach out through cyberspace and give you a hug and let you cry on my shoulder, I would do so. I understand. My prayers are with you (and your daughter and the rest of the family). You'll grieve, and then you'll gain strength, and then you'll be ready to fight again. Tammy (mom to , age 9, with pauci-articular JA and uveitis) http://www.annasjra.blogspot.com OT- Depressing news Hello everyone. I know this is not the right forum, but I really need a good cry right now. Long story short, my Miranda was dx at age 5 with a form of muscular dystrophy that runs in DH family. I actually had genetic testing done in utero, but the results were interpreted as "borderline" . When she did not meet her developmental milestones at age 5, docs confirmed the dx of MMD. But, she has very mild symptoms, most of which were explained once she was also dx with JIA. I questioned her new MD neuro, who suggested a repeat genetic test. Well, I just got a call back from the neuro nurse. The results are back, and "are consistent with a diagnosis of Myotonic Muscular Dystrophy". I know this doesn't change anything, really, since Miranda has had both MMD and JIA diagnoses for a couple of years now, but I really had convinced myself that her symptoms were all explained by the JIA, and that she really did not have MMD. Now I have to consider how both diseases will impact her life. I can't take any more disappointment. I just can't be supermom anymore.Thanks for letting me vent. Sheilamom to Miranda, 11, JIA/MMD, and , 13, asthma/allergies Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi Sheila, I don't know what to say other than to send you hugs. Just when you think your plate is full something else gets put on it. I have a friend that says, I wish God didn't trust me so much.......Isn't that the truth. If you can, try to focus on today. The what ifs only cause stress and worry. Allow yourself to cry. I'm sending prayers your way, ' & a 11yr JIA/uveitisSheila <mannas_mom@...> wrote: Hello everyone. I know this is not the right forum, but I really need a good cry right now. Long story short, my Miranda was dx at age 5 with a form of muscular dystrophy that runs in DH family. I actually had genetic testing done in utero, but the results were interpreted as "borderline". When she did not meet her developmental milestones at age 5, docs confirmed the dx of MMD. But, she has very mild symptoms, most of which were explained once she was also dx with JIA. I questioned her new MD neuro, who suggested a repeat genetic test. Well, I just got a call back from the neuro nurse. The results are back, and "are consistent with a diagnosis of Myotonic Muscular Dystrophy". I know this doesn't change anything, really, since Miranda has had both MMD and JIA diagnoses for a couple of years now, but I really had convinced myself that her symptoms were all explained by the JIA, and that she really did not have MMD. Now I have to consider how both diseases will impact her life. I can't take any more disappointment. I just can't be supermom anymore.Thanks for letting me vent. Sheilamom to Miranda, 11, JIA/MMD, and , 13, asthma/allergies Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 HI Sheila- said it best.... you are an incredible woman. There are no words I can offer to make it seems better, or take away the disappointment. But you are incredible strong to have dealt with all of this for so long already... and as the saying goes, what doesn't kill us makes us stronger. You don't have to try to be supermom - you already are. And you are entitled to cry and grieve... But one day at a time you will be strong as needed - and your daughter and family are blessed by your strength. My prayers and best hopes to you- Colleen (mom to Caitlin, 9, systemic)Sheila <mannas_mom@...> wrote: Hello everyone. I know this is not the right forum, but I really need a good cry right now. Long story short, my Miranda was dx at age 5 with a form of muscular dystrophy that runs in DH family. I actually had genetic testing done in utero, but the results were interpreted as "borderline". When she did not meet her developmental milestones at age 5, docs confirmed the dx of MMD. But, she has very mild symptoms, most of which were explained once she was also dx with JIA. I questioned her new MD neuro, who suggested a repeat genetic test. Well, I just got a call back from the neuro nurse. The results are back, and "are consistent with a diagnosis of Myotonic Muscular Dystrophy". I know this doesn't change anything, really, since Miranda has had both MMD and JIA diagnoses for a couple of years now, but I really had convinced myself that her symptoms were all explained by the JIA, and that she really did not have MMD. Now I have to consider how both diseases will impact her life. I can't take any more disappointment. I just can't be supermom anymore.Thanks for letting me vent. Sheilamom to Miranda, 11, JIA/MMD, and , 13, asthma/allergies Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Sheila, My heart goes out to you and your daughter. What a lot to be dealt. I don't have any advice but wanted to let you know that I am sending my prayers..... -HadleyColleen <bookissmom@...> wrote: HI Sheila- said it best.... you are an incredible woman. There are no words I can offer to make it seems better, or take away the disappointment. But you are incredible strong to have dealt with all of this for so long already... and as the saying goes, what doesn't kill us makes us stronger. You don't have to try to be supermom - you already are. And you are entitled to cry and grieve... But one day at a time you will be strong as needed - and your daughter and family are blessed by your strength. My prayers and best hopes to you- Colleen (mom to Caitlin, 9, systemic)Sheila <mannas_momhotmail> wrote: Hello everyone. I know this is not the right forum, but I really need a good cry right now. Long story short, my Miranda was dx at age 5 with a form of muscular dystrophy that runs in DH family. I actually had genetic testing done in utero, but the results were interpreted as "borderline". When she did not meet her developmental milestones at age 5, docs confirmed the dx of MMD. But, she has very mild symptoms, most of which were explained once she was also dx with JIA. I questioned her new MD neuro, who suggested a repeat genetic test. Well, I just got a call back from the neuro nurse. The results are back, and "are consistent with a diagnosis of Myotonic Muscular Dystrophy". I know this doesn't change anything, really, since Miranda has had both MMD and JIA diagnoses for a couple of years now, but I really had convinced myself that her symptoms were all explained by the JIA, and that she really did not have MMD. Now I have to consider how both diseases will impact her life. I can't take any more disappointment. I just can't be supermom anymore.Thanks for letting me vent. Sheilamom to Miranda, 11, JIA/MMD, and , 13, asthma/allergies Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Shiela: I have not words of wisdom for you. I am sending many hugs and even more prayers your way. Sending prayers & happy thoughts, Beth :-) OT- Depressing news Hello everyone. I know this is not the right forum, but I really need a good cry right now. Long story short, my Miranda was dx at age 5 with a form of muscular dystrophy that runs in DH family. I actually had genetic testing done in utero, but the results were interpreted as "borderline" . When she did not meet her developmental milestones at age 5, docs confirmed the dx of MMD. But, she has very mild symptoms, most of which were explained once she was also dx with JIA. I questioned her new MD neuro, who suggested a repeat genetic test. Well, I just got a call back from the neuro nurse. The results are back, and "are consistent with a diagnosis of Myotonic Muscular Dystrophy". I know this doesn't change anything, really, since Miranda has had both MMD and JIA diagnoses for a couple of years now, but I really had convinced myself that her symptoms were all explained by the JIA, and that she really did not have MMD. Now I have to consider how both diseases will impact her life. I can't take any more disappointment. I just can't be supermom anymore.Thanks for letting me vent. Sheilamom to Miranda, 11, JIA/MMD, and , 13, asthma/allergies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Sheila,I guess I need to expand my prayers for your family beyond calm and normalcy returning to your family. This is the right forum - we are all here to listen and support. I can only imagine how you must be feeling right now. I wish I had some wonderful words of wisdom.One of my best friends has MS. It may not be of much comfort, but with todays meds, she is very active and lives a full life.Allow yourself time to grieve...it is important. I will pray for you to find strength and peace.Sheila <mannas_mom@...> wrote: Hello everyone. I know this is not the right forum, but I really need a good cry right now. Long story short, my Miranda was dx at age 5 with a form of muscular dystrophy that runs in DH family. I actually had genetic testing done in utero, but the results were interpreted as "borderline". When she did not meet her developmental milestones at age 5, docs confirmed the dx of MMD. But, she has very mild symptoms, most of which were explained once she was also dx with JIA. I questioned her new MD neuro, who suggested a repeat genetic test. Well, I just got a call back from the neuro nurse. The results are back, and "are consistent with a diagnosis of Myotonic Muscular Dystrophy". I know this doesn't change anything, really, since Miranda has had both MMD and JIA diagnoses for a couple of years now, but I really had convinced myself that her symptoms were all explained by the JIA, and that she really did not have MMD. Now I have to consider how both diseases will impact her life. I can't take any more disappointment. I just can't be supermom anymore. Thanks for letting me vent. Sheila mom to Miranda, 11, JIA/MMD, and , 13, asthma/allergies Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi Sheila, Thanks for " venting " to us. We are here to support each other! I don't post very often but I read daily and pray for everyone on here. I am so sorry to hear about your news. Take the time to have a good cry and let those around you help to support. It is so hard as the MOM to not take it all in and be the strong one. Here is a big hug from me to you!! (Clare 13 psoriatic) > > Hello everyone. I know this is not the right forum, but I really > need a good cry right now. Long story short, my Miranda was dx at > age 5 with a form of muscular dystrophy that runs in DH family. I > actually had genetic testing done in utero, but the results were > interpreted as " borderline " . When she did not meet her developmental > milestones at age 5, docs confirmed the dx of MMD. But, she has very > mild symptoms, most of which were explained once she was also dx > with JIA. I questioned her new MD neuro, who suggested a repeat > genetic test. > > Well, I just got a call back from the neuro nurse. The results are > back, and " are consistent with a diagnosis of Myotonic Muscular > Dystrophy " . I know this doesn't change anything, really, since > Miranda has had both MMD and JIA diagnoses for a couple of years > now, but I really had convinced myself that her symptoms were all > explained by the JIA, and that she really did not have MMD. Now I > have to consider how both diseases will impact her life. I can't > take any more disappointment. I just can't be supermom anymore. > Thanks for letting me vent. > Sheila > mom to Miranda, 11, JIA/MMD, and , 13, asthma/allergies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Sheila...soft hugs come with this email as you absorb your news. You will find strength as days go by, you will endure! Listen to Rascal Flatts latest song called "STAND". It does wonders for me!!!!!!!!! Hangin tight & Hangin toughDonnawww.caringbridge.org/visit/donnafoxkeidelSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
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