Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Hi Kathy, Thanks so much for your great introduction to the group. The members of this list are so wonderful and you are sure to find a great deal of welcomed support and many friends here. It sure sounds like you are dealing with Mito too and I'm not surprised that you have heard the same thing that so many others have heard. You may be surprised to hear from other moms here who have children with Mito. We have many of them and they do occasionally share issues when it mimics the issues the adults are dealing with. We still try to keep the main objective here as adult issues but you know.. there are too many moms and grandmas here to be absolutely mute on the subject. How do you find Children's in Denver in dealing with Mito issues? Now.. miniature doll houses. That sounds like a very soothing hobby. I bet it can be expensive though. Any pictures? Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Kathy Welcome to the list. I am glad to see you here. I'm interested in your dollhouse hobby. I have two started, but haven't worked on them for some time. Maybe this summer or next. laurie Deep breath. I joined this list last week and have been trying to get to know you all before posting. I'm pretty quiet as I spend a lot of time on the computer with email in a different arena (dollhouse miniatures) and so thought I better at least introduce myself. I know a few of you from lists I've previously been on, and politics have kept me off this list until now. I'm glad to be here. I'm almost 50, the mom of five, the youngest of whom has an inborn error of energy metabolism which has caused her to be profoundly disabled. i am quietly on the mito list for any issues that may come up but she is not typical of a child with mito. I'm on this list for me, however. I have been increasingly more tired in spite of increased sleep time over the last few years and began having some nuerological problems a few years ago. I've been through teh same type of diagnosis as most - nearly ending with a diagnosis of Fibro Myalgia and CFS. I was sent to a specialist in neuro-muscular disorders where we did extensive testing (but no biopsies except nerve) and have determined that I have an undetermined auto-immune disorder. My mother died at 62 and had lupus supposedly for 25 years, but at the end of her life a doctor suspected that it was an incorrect diagnosis. I have peripheral neuropathy and the beginnings of a secondary Sjogrens Syndrome (causes dry eyes & mouth when I sleep - however I also drool lately!). I take high doses of Neurontin, and have had my thyroid removed. I have hypoglycemia and early menopause! All probably related to the same auto immune thing. Anyway, I look forward to getting some valuable information and help with my juggling act (food, vitamins, meds, sleep etc.) so that I feel better! Kathy , Denver Colorado, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Kathy, I wanted to say hi also. If you see someone sign their e-mail LilSis, that is me, since I am Laurie's younger sister, but you might remember me just as . Welcome! > " Kathy (HalfScale Minis) " wrote: > > Deep breath. > > I joined this list last week and have been trying to get to know you > all before posting. I'm pretty quiet as I spend a lot of time on the > computer with email in a different arena (dollhouse miniatures) and so > thought I better at least introduce myself. > > I know a few of you from lists I've previously been on, and politics > have kept me off this list until now. I'm glad to be here. > > I'm almost 50, the mom of five, the youngest of whom has an inborn > error of energy metabolism which has caused her to be profoundly > disabled. i am quietly on the mito list for any issues that may come > up but she is not typical of a child with mito. I'm on this list for > me, however. > > I have been increasingly more tired in spite of increased sleep time > over the last few years and began having some nuerological problems a > few years ago. I've been through teh same type of diagnosis as most - > nearly ending with a diagnosis of Fibro Myalgia and CFS. I was sent > to a specialist in neuro-muscular disorders where we did extensive > testing (but no biopsies except nerve) and have determined that I have > an undetermined auto-immune disorder. My mother died at 62 and had > lupus supposedly for 25 years, but at the end of her life a doctor > suspected that it was an incorrect diagnosis. I have peripheral > neuropathy and the beginnings of a secondary Sjogrens Syndrome (causes > dry eyes & mouth when I sleep - however I also drool lately!). > > I take high doses of Neurontin, and have had my thyroid removed. I > have hypoglycemia and early menopause! All probably related to the > same auto immune thing. > > Anyway, I look forward to getting some valuable information and help > with my juggling act (food, vitamins, meds, sleep etc.) so that I feel > better! > > Kathy , Denver Colorado, USA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hi Kathy, Good luck to you. I am no doctor, but it sounds like Mito to me. We are all here to support you. I'd find a Mito Doc, and request a Fresh Tissue Biopsy, as they are the most effective way to diagnos these diseases. Best of Luck. my email is Middpowell@... You'll be in my thoughts, Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Welcome Kathy, Im glad you are here and have joined the list. So many people here have a great knoweldge of mito (I am still learning myself). I also take Neurontin but probably not as high as a dose. I am on 3600 Milligrams a day and I take it for pain and seizure control. I love that medicine as it has really helped me a lot I have a diagnosis of carnitine deficiency, but now my neuro is looking into the possibility of something else mito in nature. If you have any questions feel free to ask, surely someone will be able to answer!! Keep Smiling, Nikki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 3600 is pretty high (that's what I'm on) as the doc said you can't absorb more than 1200 at a time...more than that you just pee out. I guess you can go to four doses of 1200 a day, or more if you get up in the night. Kathy -----Original Message-----From: nikkinetgirl Sent: Friday, May 03, 2002 2:48 PMTo: Subject: Re: Intro to mostWelcome Kathy, Im glad you are here and have joined the list. So many people here have a great knoweldge of mito (I am still learning myself). I also take Neurontin but probably not as high as a dose. I am on 3600 Milligrams a day and I take it for pain and seizure control. I love that medicine as it has really helped me a lot I have a diagnosis of carnitine deficiency, but now my neuro is looking into the possibility of something else mito in nature.If you have any questions feel free to ask, surely someone will be able to answer!! :)Keep Smiling,Nikki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hi and laurie...nice to see both of you again! Children's is a great hospital...but we also have the University of Colorado Health Sciences Center which is a fantastic center for adults and I think we've gotten a lot of good doctors who were trained here who decided to stay around. I saw a neurologist I really like, and she referred me to the head of the UCHSC Neuro department - the expert in neuro-muscular disease that I mentioned earlier. He was incredible and very thorough...and I think will be a huge resource in the future. I really feel lucky to have the medical support here that we do. As for the dollhouse thing, I decided about a year and a half ago to drop off all the medical lists....the ones I was reading were all about kids who had deteriorating disorders and that doesn't fit our circumstances and I found I was depressed a lot. The pain wasn't under control, and I had stopped working after my hubby got a job that could support us without me working. I needed to do something just "fun" so I looked at the dollhouse lists on yahoo...something I really have always loved and never could afford to do. I lusted and looked for awhile and then finally settled on doing a house in 1/24 scale - half the size of a "regular" dollhouse since it wouldn't take up the space. Well, I soon found that things were few and far between in that scale and decided to begin an online store for that scale and so that's what I do now. I still play in other scales, but I really "work" in the 1/24 scale and hopefully will be creating my own line soon called "Just the Right Size". It's something I have always loved and can do from home and online. - Perfect for me! Plus I can go look at everyone else's stuff and enjoy myself so much of the time. Someday I hope to be able to go to all the shows (including the ones in London) and at least have the business cover the costs. thank you all for the nice welcome. Kathy -----Original Message-----From: aadams0000@... You may be surprised to hear from other moms here who have children with Mito. We have many of them and they do occasionally share issues when it mimics the issues the adults are dealing with. We still try to keep the main objective here as adult issues but you know.. there are too many moms and grandmas here to be absolutely mute on the subject. How do you find Children's in Denver in dealing with Mito issues?Now.. miniature doll houses. That sounds like a very soothing hobby. I bet it can be expensive though. Any pictures? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2002 Report Share Posted May 12, 2002 Hey Everyone--Kathy and Alice hope you don't mind the comment I make next, just thought I'd bring up the topic of hobbies, since doll houses is one of them. Was wondering what everyone out on the site like to do for hobbies----mine is doing ceramics. I like to paint angels that are child-like, figurines, cutecie (?sp) characters like kittens, puppies, dragons that are like a guilted toy, Christmans trees and Santa Claus. I really enjoy it, but lately (actually for sometime now) it has been difficult to find the time to do such. Just trying to hold up the fort on meeting the demands that this disease (if she does have mito) is putting on my daughter and me/family. I just recently finished some paper work that was requiring a great deal of info regarding doctor visits, hospital (IP and OP), diagnostic tests, school info, etc. A real pain in the butt, but I needed to do it, because it was regarding her 7 year follow up on Medicaid elligibility. The crap just never ends, does it??? Anyway, back to the more positive side--everyone, tell us what you like to do---hope the disease has not taken this joy away. Thinking of You PS Hope this request hasn't been already asked, behind on reading all the emails, plus about two weeks ago our computer had a fit and lost all of the stored emails we received in the past and also lost the new incoming ones that day. So, if by chance you had sent a post directly to me about anything and I haven't responded, sorry, lost it. The joys of life :-) Re: Intro to most > Hi Kathy, > > Thanks so much for your great introduction to the group. The members of this > list are so wonderful and you are sure to find a great deal of welcomed > support and many friends here. It sure sounds like you are dealing with Mito > too and I'm not surprised that you have heard the same thing that so many > others have heard. > > You may be surprised to hear from other moms here who have children with > Mito. We have many of them and they do occasionally share issues when it > mimics the issues the adults are dealing with. We still try to keep the main > objective here as adult issues but you know.. there are too many moms and > grandmas here to be absolutely mute on the subject. How do you find > Children's in Denver in dealing with Mito issues? > > Now.. miniature doll houses. That sounds like a very soothing hobby. I bet > it can be expensive though. Any pictures? > > 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. > > Quote Link to comment Share on other sites More sharing options...
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