Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 Hi Bob, Welcome to the list!! I don't live in LA, but if you have internet access and a credit card you can get it all at <A HREF= " www.juicers.net " >www.juicers.net</A> orders over $20 are free shipping, and they very reasonably priced. Good Luck!!! Hugs, Penny 173/162/130 Visit my family at: <A HREF= " http://www.geocities.com/heartland/pines/6116/wilson.html " > Home Page</A> <A HREF= " http://www.geocities.com/heartland/pines/6116/wilson.html " >http://www.ge ocities.com/heartland/pines/6116/wilson.html</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 Welcome to the list, Bob! Gail Chicago In a message dated 8/22/99 4:07:54 PM Central Daylight Time, bobpackard@... writes: << My name is Bob and I've got over 200lbs to lose. I started the induction diet and made it through that and one more week before I gave in. Now I'm restarting Induction. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 Bob If you have a GNC around you they care most of the Atkins supplies or you can order them from online. Sue --- RVP wrote: > > > Hi Folks, > My name is Bob and I've > got over 200lbs to lose. > I started the induction > diet and made it through > that and one more week > before I gave in. Now > I'm restarting Induction. > > Does anyone in the Los > Angeles area know where > in LA I can find the > largest supply of lo-carb > and Atkins goodies? > Thanks, > Bob > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 Shadcat708@... wrote: > From: Shadcat708@... > > Hi Bob, > > Welcome to the list!! I don't live in LA, but if you have internet access > and a credit card you can get it all at <snip> Hi Penny,Thanks but I'd prefer to buy locally. Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 WELCOME BOB, Good luck and keep on the diet it really does work, give it a good month, I just tell myself I didnt get fat overnite so I can give it 1 month and see how I feel, well my month is just about up and I have learned alot about my eating habits also, I have alot to change but I feel better and I dont know of any other diet that you can eat so much on. again good luck, I am not from LA so I cannot help you with any atkins info...love Heidi Newbie > > > Hi Folks, > My name is Bob and I've > got over 200lbs to lose. > I started the induction > diet and made it through > that and one more week > before I gave in. Now > I'm restarting Induction. > > Does anyone in the Los > Angeles area know where > in LA I can find the > largest supply of lo-carb > and Atkins goodies? > Thanks, > Bob > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 susan birney wrote: > > > Bob If you have a GNC around you they care most of the Atkins > supplies or you can order them from online. Sue > Hi Sue, Fer Pete's sake I shoulda' thought of them first! Thanks very much! Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Celia Welcome to the group. I don't have MNGIE (that I know of), but your symptoms and journey sound very familiar. It took 15 years for me to get a diagnosis. I think you will find that people will try to answer your questions and support you as your journey continues. laurie Reply-To: Date: Wed, 09 Oct 2002 17:45:57 -0000 To: Subject: Newbie Hi, i just joined your group today, although I have been suffering from undiagnosed muscle and gi problems for about 14 years. Only recently has my neurolgist questioned the combination of my muscle weakness, fatigue etc and my gi motility problems.,combined with lots of other weird things as possibly being a mitochondrial disease (MNGIE?) I saw the geneticist last week and have had round one of testing. i did have muscle biopsies years ago but they were just non specifically abnormal. Does this sort of scenario sound familiar to anyone? Does anyone here have MNGIE? From my reading it certainly sounds like I have something like it. I am interested in any info people have and in sharing my day to day experiencies with this frustrating problems. Hope everyone has a good day, Celia in Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Welcome ! I'm no expert, but there are many on this list who are. You will find that everyone is so helpful and understanding. With all the tests you have had I'm sure that MS has prob. already been ruled out although several of your symptoms sound like it. Hopefully someone will be able to help you identify if your symptoms sound like mito..sorry I'm just sure. Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Hi . First of all I just want you to know you're not alone. We have all been where you are and have been told that it was in our heads or we weren't sick enough or something of the like. Unfortunately for most there aren't enough doctors who know much of anything about Mito. It took me going from RI to Cleveland, Ohio to get my diagnosis so I could get my kids diagnosed and we could treat my rather ill son. Any and all of what you said could be within a Mito. disease. I can't remember how you came to the conclusion that your issues might be mito. Could you refresh my memory? I think just about all of us here either deal with all of what you mentioned or atleast some of it. I hope you can get some answers. Where exactly are you located? Would you be able to see a Muscular Dystrophy doctor at your local MDA clinic. You can find where your local clinic is and who the doctor is at the MDA website at Muscular Dystrophy Association | Clinics & Services Please keep us all posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Thanks ! Just knowing that there is somewhere to vent my frustrations is reassuring! My best friend and roommate is wonderful, but she cannot understand how frustrating this is for me. >From: LILQT4U1984@... >Reply-To: >To: >Subject: Re: Newbie >Date: Tue, 19 Nov 2002 10:37:17 EST > >Welcome ! I'm no expert, but there are many on this list who are. >You >will find that everyone is so helpful and understanding. > With all the tests you have had I'm sure that MS has prob. already >been >ruled out although several of your symptoms sound like it. Hopefully >someone >will be able to help you identify if your symptoms sound like mito..sorry >I'm >just sure. > > Blessings, > > > _________________________________________________________________ Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Hi - I first started this in Illinois. My doctors first said maybe MS...but I do not have lesions on my spinal cord or in my brain, so they ruled that out. Then they said maybe it is a cerebellum disorder. He sent me to a specialist who said because none of my tests show anything (although I do have muscle weakness and delayed reflexes), he really thought that it is in my head (he told me my only option was to F*** it and come back when it gets worse...direct quote). I recently moved to Connecticut because of a job transfer, and my best friend (who has Spina Bifida) had me see her neurologist. After doing her preliminary tests and reading my other doctors findings, she said that sometimes the tests they run may be normal, but there are mitochondrial diseases that do not necessarily show up. After some of my new tests showed nothing, she is leaning more to this conclusion. Thanks for the web site...I will definitely look into it! > Hi . First of all I just want you to know you're not alone. We have all > been where you are and have been told that it was in our heads or we weren't > sick enough or something of the like. Unfortunately for most there aren't > enough doctors who know much of anything about Mito. It took me going from > RI to Cleveland, Ohio to get my diagnosis so I could get my kids diagnosed > and we could treat my rather ill son. > > Any and all of what you said could be within a Mito. disease. I can't > remember how you came to the conclusion that your issues might be mito. > Could you refresh my memory? I think just about all of us here either deal > with all of what you mentioned or atleast some of it. I hope you can get > some answers. Where exactly are you located? Would you be able to see a > Muscular Dystrophy doctor at your local MDA clinic. You can find where your > local clinic is and who the doctor is at the MDA website at > > <A HREF= " http://www.mdausa.org/clinics/ " >Muscular Dystrophy Association | Clinics & Services</A> > > Please keep us all posted. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Hi , I am going through a multitude of tests, but one of the things that my doctor says I might have is a mitochondrial disorder. It sounds like your Doctor already is suspecting Mitochondrial Disorder. Hang in there. You are in the tough spot of all the unknown. I can relate to many of the symptoms that you are describing, including being told it was all in your head. Negative tests results are usually a blessing, but in our case they are like a school yard bully taunting " It's all in your head " . Hang in there with your doctor, and tell him that other people with mito have very similar symptoms and results. The www.UMDF.org site has a lot of articles in the " Library " section that might help both you and your doctor. You will probably get more suggestions from our very knowledgeable group as to possible directions to go for help. Cheers, Ruth Newbie Hi- I have been reading the posts, but staying silent up until this point. I am going through a multitude of tests,but one of the things that my doctor says I might have is a mitochondrial disorder. I have had MRIs, blood work taken, EEG, X-rays, and now I am having my second EMG. So far, all of my results have been normal. I have been having terrible headaches that are not relieved by over the counter meds (I am now on Neurontin), loss of feeling in my feet and lower legs, ataxia, loss of balance, dizzyness, pins and needles in my extremities and face, short-term memory lapses, and sometimes the inability to speak (most of the time I know what I want to say, but it won't come out but sometimes, I don't even understand what people are saying to me). My question is, does any of these things that I am experiencing sound like a mitochondrial problem? I am getting awfully scared and frustrated that these tests are showing nothing. I have had " specialists " tell me it is all in my head, but I wouldn't make this stuff up. I just thought I would ask you all who seem more like experts than who I have been talking to. Thanks in advance. (aka Tiggermania_2000) 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 November 19, 2002 Report Share Posted November 19, 2002 , Where are you in Connecticut? This is not a bad place to be as the MDA is strong there and Yale New Haven Hospital has some good Neurologists and has an MRS machine which is not a common thing. I had my MRS there. I'm very familiar with the area as is . Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 I am in Stamfod, but I see a neurologist in Carmel, NY. I believe she did say something about sending me to Yale (but then again, my memory isn't too good...this is why my best friend comes along). Thanks for the info! > >Reply-To: >To: >Subject: Re: Newbie >Date: Tue, 19 Nov 2002 09:04:33 -0800 (PST) > >, > >Where are you in Connecticut? This is not a bad place >to be as the MDA is strong there and Yale New Haven >Hospital has some good Neurologists and has an MRS >machine which is not a common thing. I had my MRS >there. > >I'm very familiar with the area as is . > >Alice > _________________________________________________________________ Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Hi Alice, What is an MRS? Ruth Re: Newbie , Where are you in Connecticut? This is not a bad place to be as the MDA is strong there and Yale New Haven Hospital has some good Neurologists and has an MRS machine which is not a common thing. I had my MRS there. I'm very familiar with the area as is . 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...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 , I'm sorry to say that your symptoms do sound very familiar and very much like Mito. Unfortunately, there are few doctors who diagnose this so you may be in for the long haul trying to get a diagnosis. Stay with this group. We can offer you some good suggestions and some great support and this does help. Don't be afraid to ask questions because that's how we all started and we still ask questions. Welcome to the Mitoldies list. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 My labs were normal for many years, along with several tests and biopsies. It wasn't until I went to Atlanta to Dr. Shoffner and had a fresh biopsy that I finally got a diagnosis. laurie Reply-To: Date: Tue, 19 Nov 2002 15:57:46 -0000 To: Subject: Re: Newbie Hi - I first started this in Illinois. My doctors first said maybe MS...but I do not have lesions on my spinal cord or in my brain, so they ruled that out. Then they said maybe it is a cerebellum disorder. He sent me to a specialist who said because none of my tests show anything (although I do have muscle weakness and delayed reflexes), he really thought that it is in my head (he told me my only option was to F*** it and come back when it gets worse...direct quote). I recently moved to Connecticut because of a job transfer, and my best friend (who has Spina Bifida) had me see her neurologist. After doing her preliminary tests and reading my other doctors findings, she said that sometimes the tests they run may be normal, but there are mitochondrial diseases that do not necessarily show up. After some of my new tests showed nothing, she is leaning more to this conclusion. Thanks for the web site...I will definitely look into it! > Hi . First of all I just want you to know you're not alone. We have all > been where you are and have been told that it was in our heads or we weren't > sick enough or something of the like. Unfortunately for most there aren't > enough doctors who know much of anything about Mito. It took me going from > RI to Cleveland, Ohio to get my diagnosis so I could get my kids diagnosed > and we could treat my rather ill son. > > Any and all of what you said could be within a Mito. disease. I can't > remember how you came to the conclusion that your issues might be mito. > Could you refresh my memory? I think just about all of us here either deal > with all of what you mentioned or atleast some of it. I hope you can get > some answers. Where exactly are you located? Would you be able to see a > Muscular Dystrophy doctor at your local MDA clinic. You can find where your > local clinic is and who the doctor is at the MDA website at > > <A HREF= " http://www.mdausa.org/clinics/ " >Muscular Dystrophy Association | Clinics & Services</A> > > Please keep us all posted. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 , One thing that started our doc on the right trail was doing an EMG in our arms after we had gone up and down stairs for as long as we were able. The EMG's in the past had been normal, but they had been done in the AM before/without and prior to exertion. It showed there was a problem AND that it was metabolic in nature when done after the stair climbing.. tiggermania_2000 wrote: >Hi- > >I have been reading the posts, but staying silent up until this >point. I am going through a multitude of tests,but one of the things >that my doctor says I might have is a mitochondrial disorder. I have >had MRIs, blood work taken, EEG, X-rays, and now I am having my >second EMG. So far, all of my results have been normal. > >I have been having terrible headaches that are not relieved by over >the counter meds (I am now on Neurontin), loss of feeling in my feet >and lower legs, ataxia, loss of balance, dizzyness, pins and needles >in my extremities and face, short-term memory lapses, and sometimes >the inability to speak (most of the time I know what I want to say, >but it won't come out but sometimes, I don't even understand what >people are saying to me). > >My question is, does any of these things that I am experiencing sound >like a mitochondrial problem? I am getting awfully scared and >frustrated that these tests are showing nothing. I have >had " specialists " tell me it is all in my head, but I wouldn't make >this stuff up. I just thought I would ask you all who seem more like >experts than who I have been talking to. > >Thanks in advance. > > (aka Tiggermania_2000) > > > >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 November 23, 2002 Report Share Posted November 23, 2002 , I have a confirmed diagnosis of mitochondrial cytopathy, and all my EMG's have still come out normal. I also have the severe headaches and was put on Neurontin in March. That seems to help them a lot. Smiles, a and now I am having my >second EMG. So far, all of my results have been normal.>>I have been having terrible headaches that are not relieved by over >the counter meds (I am now on Neurontin), loss of feeling in my feet >and lower legs, ataxia, loss of balance, dizzyness, pins and needles >in my extremities and face, short-term memory lapses, and sometimes >the inability to speak (most of the time I know what I want to say, >but it won't come out but sometimes, I don't even understand what >people are saying to me).> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 My 19 year old daughter was recently diagnosed with PSC. It has been a rollercoaster ride but she is doing well so for that I am grateful. I found this support group and started reading the posts which has been a great help. Just wanted to introduce myself since I was begining to feel like a lurker. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi , Welcome to the group. Sorry you had need to find us though. I'm glad that things have calmed down since the diagnosis. I know that prior to dx and during dx was a pretty scary time for me and many others here. There is a relief in finding out just exactly what the matter is with you or your child. Don't feel bad about being a "lurker." I know out in the non psc world lurking has bad conotations. Around here it often means "I'm doing OK, but I'm still concerned with the rest of the group." Other times we are just too tired or sick to respond, but we want to know what's going on with everyone else. Whatever the reason, no one minds a lurker here. I look forward to getting to know you and the other new people I have failed to welcome lately. Sorry to everyone I've missed. Cheryl Berg, Idaho 45Married 26 years, 4 children, 3grchildrenPSC 01, UC 00, Fibromyalgia, gall baldder removed '93disability (retired English teacher) Newbie My 19 year old daughter was recently diagnosed with PSC. Ithas been a rollercoaster ride but she is doing well so for that I amgrateful. I found this support group and started reading the postswhich has been a great help. Just wanted to introduce myself since Iwas begining to feel like a lurker. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Welcome ! So sorry to hear about 's diagnosis, but glad that you found the support group, and that she is doing well. Yes, I agree it is a wild roller coaster ride at the beginning, but things do steady down! I think they are catching many more cases of PSC at an early age because of sensitive blood tests. My hope is that early medical intervention may help slow the progression. Let us know if you have any questions! Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi , Welcome to the group. I have also been a lurker lately. I just wanted to welcome you. My son is 18 and was diagnosed with PSC a couple years ago. He had his transplant 7 months ago and is doing fantastic. The rollercoaster you are on is not fun a fun one. The ups and downs before and after diagnosis are so hard. How was diagnosed? If you don't mind tell us a little about her and how she is coping with the diagnosis. This support group will help you so much. Be sure to read the archives and also 's wonderful informational website. It has everything you need to know about PSC and more. Glad you found us, but sorry to hear about another young teen having been diagnosed. Take care, Joanne (mom of Todd, 18, psc 12/01, crohns 1/02, tx twice 12/03 and doing great) > My 19 year old daughter was recently diagnosed with PSC. It > has been a rollercoaster ride but she is doing well so for that I am > grateful. I found this support group and started reading the posts > which has been a great help. Just wanted to introduce myself since I > was begining to feel like a lurker. Quote Link to comment Share on other sites More sharing options...
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