Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 I have no information on this, but wanted to send you some hugs. laurie > > I am about 95% sure I have deafness dystonia disorder. This is from > audio exam (yesterday) and DNA analysis still not finished but > showing a pile of abnormalities. Scared about prognosis. Any info > would be appreciated. I am 30 and other than not hitting milestones > others would have hit like never learning to jump rope, having to be > taught to climb stairs, no major symptoms until age 29. > > As you can see, emotionally I'm having a hard enough time to lose > sleep over this. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 You might want to check out the following website. It appears to have a lot of info on dystonia. http://www.dystonia-foundation.org/ The way you are feeling will pass with time and more information. I wish I had more information to give you, but this isn't something I am familiar with myself. HUGS, merlecollie wrote: > > I am about 95% sure I have deafness dystonia disorder. This is from > audio exam (yesterday) and DNA analysis still not finished but > showing a pile of abnormalities. Scared about prognosis. Any info > would be appreciated. I am 30 and other than not hitting milestones > others would have hit like never learning to jump rope, having to be > taught to climb stairs, no major symptoms until age 29. > > As you can see, emotionally I'm having a hard enough time to lose > sleep over this. > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 Hi , All of us here are have been through the frightening diagnosis. I wished I could say a Magic word and make it disappear. Don't let anyone tell you how you are supposed to feel, we all deal with pain and catastrophic illnesses differently. My advice...if your interested is learn as much about the disease as you can, so you know what to look out for. Remember no questions are stupid. I hope you have a gentle, caring, doctor. If you don't, maybe one of us could help you find one. I want tohelp you. Being afraid is one of the worst kinds of pain, and maybe if we can answer your questions, you might not feel so alone. You may email me personally if you would like. Also Once you've gotten a diagnosis, and have learned about your illness it might be helpful write it all down, even the tough parts, and share that with your friends and family. I have found that helpful to me. Robin Middpowell@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Thanks so much Laurie...they were badly needed! > > > I have no information on this, but wanted to send you some hugs. > > laurie > > > > > > I am about 95% sure I have deafness dystonia disorder. This is from > > audio exam (yesterday) and DNA analysis still not finished but > > showing a pile of abnormalities. Scared about prognosis. Any info > > would be appreciated. I am 30 and other than not hitting milestones > > others would have hit like never learning to jump rope, having to be > > taught to climb stairs, no major symptoms until age 29. > > > > As you can see, emotionally I'm having a hard enough time to lose > > sleep over this. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Thanks ....getting used to increasing disability is hard but you guys have done it so you inspire me to do the same. > > > > I am about 95% sure I have deafness dystonia disorder. This is from > > audio exam (yesterday) and DNA analysis still not finished but > > showing a pile of abnormalities. Scared about prognosis. Any info > > would be appreciated. I am 30 and other than not hitting milestones > > others would have hit like never learning to jump rope, having to be > > taught to climb stairs, no major symptoms until age 29. > > > > As you can see, emotionally I'm having a hard enough time to lose > > sleep over this. > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Thank you Robin, I really appreciate all the support. It is frightening and it was funny because I so didn'treally want to know the results. On Thurs.I have a pulmonary exam. I am dreading it. I have to " think " in order to breathe and I'm so tired of dealing with all this as we all are I'm sure. > Hi , > All of us here are have been through the frightening diagnosis. I wished I > could say a Magic word and make it disappear. Don't let anyone tell you how > you are supposed to feel, we all deal with pain and catastrophic illnesses > differently. My advice...if your interested is learn as much about the > disease as you can, so you know what to look out for. Remember no questions > are stupid. I hope you have a gentle, caring, doctor. > If you don't, maybe one of us could help you find one. I want tohelp you. > Being afraid is one of the worst kinds of pain, and maybe if we can answer > your questions, you might not feel so alone. > You may email me personally if you would like. Also Once you've gotten a > diagnosis, and have learned about your illness it might be helpful write it > all down, even the tough parts, and share that with your friends and family. > I have found that helpful to me. > Robin Middpowell@a... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Hi , Are you dealing with hearing loss at this point? I am completely deaf and hear with a Cochlear Implant well enough to sometimes pass as a hearing person on the telephone. I have had a full life-time experience with hearing loss ranging from moderate/severe until it progressed to profound deafness in my 20's. Let me know if I can help in anyway. Ruth Fox > I am about 95% sure I have deafness dystonia disorder. This is from > audio exam (yesterday) and DNA analysis still not finished but > showing a pile of abnormalities. Scared about prognosis. Any info > would be appreciated. I am 30 and other than not hitting milestones > others would have hit like never learning to jump rope, having to be > taught to climb stairs, no major symptoms until age 29. > > As you can see, emotionally I'm having a hard enough time to lose > sleep over this. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Thanks for your offer to help. No, I thought my hearing was perfect. In fact, I didn't notice the problem until the exam. During the exam it was obvious to me. My mother is completely deaf in one ear and only hears 2 frequencies in the other so I hope I don't get to that point but who knows. > > I am about 95% sure I have deafness dystonia disorder. This is > from > > audio exam (yesterday) and DNA analysis still not finished but > > showing a pile of abnormalities. Scared about prognosis. Any info > > would be appreciated. I am 30 and other than not hitting > milestones > > others would have hit like never learning to jump rope, having to > be > > taught to climb stairs, no major symptoms until age 29. > > > > As you can see, emotionally I'm having a hard enough time to lose > > sleep over this. > > > > Quote Link to comment Share on other sites More sharing options...
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