Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Hi Groupies, Just wanted to say hello after a long absence- let you know I am still alive and kicking. I was away for quite a while and then busy tracking down appointments and such but I am back. I hope this has been a good time for everyone. I had some more testing done, of the neuro muscular junction which showed abnormalities, but nothing definite. The neuro said I didn;t " look " like I had mito, although she was intrigued by the variety of problems I have. I will be having a repeat MRI sometime and a sleep study as per the mito doc's suggestiong, but I am not expecting any great revelations at this point. I want to thank you all for being here though to give me a " home " in this complicated world of diagnoses!,I missed you all, Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Celia It is good to hear from you. We are always here for you. Hugs, laurie > > Reply-To: > Date: Tue, 29 Jun 2004 18:58:29 -0000 > To: > Subject: I'm Back! > > Hi Groupies, Just wanted to say hello after a long absence- let you > know I am still alive and kicking. I was away for quite a while and > then busy tracking down appointments and such but I am back. I hope > this has been a good time for everyone. I had some more testing done, > of the neuro muscular junction which showed abnormalities, but nothing > definite. The neuro said I didn;t " look " like I had mito, although she > was intrigued by the variety of problems I have. I will be having a > repeat MRI sometime and a sleep study as per the mito doc's > suggestiong, but I am not expecting any great revelations at this > point. I want to thank you all for being here though to give me a > " home " in this complicated world of diagnoses!,I missed you all, Celia > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Celia, Glad to see you post, it has been a while. I don't know why some docs think we are suppose to " look " a certain way to have a certain disease. Does a diabetic " look " any different than someone that doesn't have diabetes? How are you feeling in general? cghng888 wrote: >Hi Groupies, Just wanted to say hello after a long absence- let you >know I am still alive and kicking. I was away for quite a while and >then busy tracking down appointments and such but I am back. I hope >this has been a good time for everyone. I had some more testing done, >of the neuro muscular junction which showed abnormalities, but nothing >definite. The neuro said I didn;t " look " like I had mito, although she >was intrigued by the variety of problems I have. I will be having a >repeat MRI sometime and a sleep study as per the mito doc's >suggestiong, but I am not expecting any great revelations at this >point. I want to thank you all for being here though to give me a > " home " in this complicated world of diagnoses!,I missed you all, Celia > > > > >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. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 I'm glad to see you are back, Celia. We missed you. About that neuro who says you don't " look " like you have mito - I can't tell you how much I've heard this. People with Mito often do look healthy when in fact they are not but doctors are just not up to speed with the disease- even neuros. I hope we hear from you again soon. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Dear Alice and Laurie, Thanks a lot for the welcome back. it is nice to back with people that " understand " . I hope you are both doing well, Celia > > I'm glad to see you are back, Celia. We missed you. About that neuro who says you don't " look " like you have mito - I can't tell you how much I've heard this. People with Mito often do look healthy when in fact they are not but doctors are just not up to speed with the disease- even neuros. > > I hope we hear from you again soon. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Celia I'm doing well. I'm still trying to get my new van and wheelchair working as they should, but I think we are getting to the bottom of things. Thanks for asking. laurie > > Reply-To: > Date: Sat, 03 Jul 2004 21:12:38 -0000 > To: > Subject: Re: I'm Back! > > Dear Alice and Laurie, Thanks a lot for the welcome back. it is nice > to back with people that " understand " . I hope you are both doing well, > Celia > > >> >> I'm glad to see you are back, Celia. We missed you. About that > neuro who says you don't " look " like you have mito - I can't tell you > how much I've heard this. People with Mito often do look healthy when > in fact they are not but doctors are just not up to speed with the > disease- even neuros. >> >> I hope we hear from you again soon. >> >> Alice > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Welcome back to everyone also. I only seem to get 1/2 of the messages. Janet Sample Re: I'm Back! > Dear Alice and Laurie, Thanks a lot for the welcome back. it is nice > to back with people that " understand " . I hope you are both doing well, > Celia > > > > > > I'm glad to see you are back, Celia. We missed you. About that > neuro who says you don't " look " like you have mito - I can't tell you > how much I've heard this. People with Mito often do look healthy when > in fact they are not but doctors are just not up to speed with the > disease- even neuros. > > > > I hope we hear from you again soon. > > > > Alice > > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
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