Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Hi Beth, I went to see a brand new Dr. in town 3 weeks ago, to establish and also to discuss 2 important concerns/issues of mine, one being consideration for MGB. She listened to my medical complaints (joint pain, GERD, family history of high blood pressure, diabetes, cancer), my social problems related to obesity, my tremendous desire to be fit and healthy for the rest of my life, and my 12 year history of being 100+ pounds overweight-constantly dieting down 20 pounds and up 25-30. She then listened to me describe the research that I had done on gastric bypass surgery, describe the MGB specifically, explain my rationale for choosing that particular procedure over all others, and then told me that the only way to lose weight for ANYONE is the " old fashioned way " with diet and exercise, handed me some papers on diet and exercise and shooed me out the door. I saw another Dr. today, recommended highly but difficult to get in to see. I was truly blown over! He let me explain the procedure briefly, got all excited about it, said " of course I'll support you " . We talked quite a bit more about the procedure, but it turns out that he is highly knowledgeable about gastric bypass and has referred many patients to a facility here in FL. He then started telling me the reasons why I need the surgery! He asked me if he could keep the patient manual that I brought in so he could read up on the MGB and consider it for future patients. I was ecstatic! The man was truly excited about it. So, sorry to be so long-winded, but be very well prepared with information. Think of answers to possible questions ahead of time. Don't give up. Foshee mgb candidate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 When you get to your goal you should go back to this doctor's office and show off the new you and let him know all the problems that have been resolved by it!! I have never heard of such an inconsiderate doctor. Pat To: MiniGastricBypassonelist <MiniGastricBypassonelist> Date: Tuesday, February 22, 2000 6:33 PM Subject: Re: New Member From: Deckbound@... Good luck Beth. My doc of 12 years dismissed me for seeking this surgery. He wouldn't even read about it. So be ready for any reaction. Many docs are open and some are closed and that is that. I came home and cried and cried the day we had it out. I loved him and trusted him and it was a very dark day. But I picked myself up and shock myself off and finally found a doc that would be supportive. It only took me 3 months!!! Those 3 months were a nightmare. Oh well I need to put it behind me and be thankful that I did have my surgery on Jan 10th and have lost 42 lbs. I am feeling a lot better and am exercising and am able to do so many more things now. Good luck to you. in Mo ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- This message is from the Mini-Gastric Bypass Mailing List at Onelist.com Please visit our web site at http://clos.net Get the Patient Manual at http://clos.net/get_patient_manual.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 I would say if he laughed you out of the office, I'd find another doctor. Doctor's are supposed to be advocates in your health care. You might do what some of the others have done and gone in and TAUGHT their doctors about the procedure and really stressed WHY you want THIS procedure and win them over to your side. The best defense against ignorance is education......... Good luck fg At 08:53 PM 02/22/2000 -0000, you wrote: > > >Hi there, not sure how this works so here it goes. I am hoping to >have the MGB and am nervous about talking to my doctor about it. >Any suggestions, I guess I am afraid of being laughed right out of >the office because I am not sure what his views on obesity surgery >are. > > >------------------------------------------------------------------------ >Get what you deserve with NextCard Visa! ZERO! Rates as low as >0.0% Intro APR, online balance transfers, Rewards Points, no >hidden fees, and much more! Get NextCard today and get the credit >you deserve! Apply now! Get your NextCard Visa at: >http://click./1/966/2/_/_/_/951252803/ >------------------------------------------------------------------------ > >This message is from the Mini-Gastric Bypass Mailing List at Onelist.com >Please visit our web site at http://clos.net >Get the Patient Manual at http://clos.net/get_patient_manual.htm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 A doctor refused to give you your own medical records? Can you say SUBPOENA??? LOL I called me doc this morning, and while they wouldn't send my records to me, I signed a release and they are mailing them to Dr Rutledge's office. fg >I also was nervous about talking to my PCP about this surgery. He was not >supportive and would not even talk with me about it. This turkey also first >refused to give me my medical records. I found another PCP quickly. > >I guess what I am trying to say is that this is your health you are talking >about and you ultimately make your own decisions. Be kind and gentle and >informative with your PCP. Even leave him a copy of the patient manuel for >him to study. If he refuses to support you, then look for another. There is >support for this surgery in the medical community. > >Sue L. > >------------------------------------------------------------------------ >Shabang!com is the place to get your FREE eStore, Absolutely FREE >Forever. If you have any desires to sell your products or services >online, or you want to expand your customer base for FREE, Come check >out Shabang!com FREE eStores! >http://click./1/1299/2/_/_/_/951253824/ >------------------------------------------------------------------------ > >This message is from the Mini-Gastric Bypass Mailing List at Onelist.com >Please visit our web site at http://clos.net >Get the Patient Manual at http://clos.net/get_patient_manual.htm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 See? You just have to shop around for the right one. Kudos to your new (not afraid of learning something new) doctor!!! :-) fg At 08:45 PM 02/22/2000 EST, you wrote: >From: ChasinTom@... > >Hi Beth, > >I went to see a brand new Dr. in town 3 weeks ago, to establish and also to >discuss 2 important concerns/issues of mine, one being consideration for MGB. > She listened to my medical complaints (joint pain, GERD, family history of >high blood pressure, diabetes, cancer), my social problems related to >obesity, my tremendous desire to be fit and healthy for the rest of my life, >and my 12 year history of being 100+ pounds overweight-constantly dieting >down 20 pounds and up 25-30. She then listened to me describe the research >that I had done on gastric bypass surgery, describe the MGB specifically, >explain my rationale for choosing that particular procedure over all others, >and then told me that the only way to lose weight for ANYONE is the " old >fashioned way " with diet and exercise, handed me some papers on diet and >exercise and shooed me out the door. > >I saw another Dr. today, recommended highly but difficult to get in to see. >I was truly blown over! He let me explain the procedure briefly, got all >excited about it, said " of course I'll support you " . We talked quite a bit >more about the procedure, but it turns out that he is highly knowledgeable >about gastric bypass and has referred many patients to a facility here in FL. > He then started telling me the reasons why I need the surgery! He asked me >if he could keep the patient manual that I brought in so he could read up on >the MGB and consider it for future patients. I was ecstatic! The man was >truly excited about it. > >So, sorry to be so long-winded, but be very well prepared with information. >Think of answers to possible questions ahead of time. Don't give up. > > Foshee >mgb candidate > >------------------------------------------------------------------------ >Get your money connected @ OnMoney.com - the first Web site that lets you >see, consolidate, and manage all of your finances all in one place. >http://click./1/1636/2/_/_/_/951270364/ >------------------------------------------------------------------------ > >This message is from the Mini-Gastric Bypass Mailing List at Onelist.com >Please visit our web site at http://clos.net >Get the Patient Manual at http://clos.net/get_patient_manual.htm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 << nervous about talking to my doctor about it. Any suggestions, I guess I am afraid of being laughed right out of the office because I am not sure what his views on obesity surgery are. >> Hey, girl! You're entitled to seek his care and ask for his support. If he balks, then it's time to find another doctor. That is bald and cold; but it's the bottom line. Take yourself by the hand and do what you have to do for you! Dee in MI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Shari, I think we've all been where you are now. It was so scarey at first. I thought I can't have what these people do. My ears are just red and it has only happened 2 times in 2 years. Well, I count my blessings for this group today. I believed they have save my life is a sort of way. With out my being aware of some of the minor signs, they would have turned into major trouble. I'm not saying you have RP and I pray that you don't. But until you are sure just at least lurk around and keep updated on what to be on the look out for. We are all so different and are being treated differently. You may be able to catch a flare and get it over with without any damage and not have another for a really long time. What ever you decide, You know you are always welcome to join in and let us know how you are. We will always be here for you in any way we can be. (And you can bet you'll get a joke from Judee)LOL Don't give up, you have a lot of people on your side, even if you don't have RP, we love ya anyway. Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Hi Janet, Welcome to the RP. list. Looking forward to getting to know you. Hugs, Sandy New Member > Hello. I am new to this group. Thanks for the welcome. Just > curious > if anyone has heard from Pritchard lately. My story is long. > Had RP since 95. I am doing well right now. PTL! Janet Frid > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2000 Report Share Posted September 28, 2000 Hi Janet, Welcome to the RP. list. Looking forward to getting to know you. Hugs, Sandy New Member > Hello. I am new to this group. Thanks for the welcome. Just > curious > if anyone has heard from Pritchard lately. My story is long. > Had RP since 95. I am doing well right now. PTL! Janet Frid > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2001 Report Share Posted May 17, 2001 In a message dated 5/15/01 10:28:31 PM Central Daylight Time, crandall@... writes: > Hello, I am a new member to this group. My husband is the one > suffering from chronic pancreatitis. He has had it for about 6 years > now. He is actually in the hospital now and has been since Sunday. > I am looking for a group he can chat with. He truly needs to find > others who experience the same daily severe pain and learn what their > coping methods are. Hello - sorry that your husband is suffering from pancreatitis. what caused his? where do you live? is he home or still hospitalized? questions, questions. you will find many friends here and lots of moral support and answers to YOUR questions. it is so nice to have others to talk to that know exactly how you feel and what you are going through. welcome to the group! i hope that i can be helpful to you in some way., Debbie Sikes djssekis@... Arkansas Chapter Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2001 Report Share Posted May 17, 2001 Hi there New Member, My name is what is yours and your husbands? I have been out of the loop a little trying to get ready for my surgery, I am to the point of needing a whipple surgery.. you are in the right place if you want a group that can answer you questions and give you support all the way around... I welcome you and am sorry that you have to be here but you will find it is a great group I would be lost without all of these wonderful people.. again Weclome and give us some info on yourselfs... Hugs and Kisses you are in my thoughts and prayers love and friendship in Mich. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 Thanks for your reply. My husband is Mike and my name is Cristina. We live just south of Columbus, OH in Grove City. His pancreatitis is ideopathic and it began with an acute attack in 1994. He is in and out of the hospital alot. Usually once every three months. His immune system is so low he also gets pnemonia alot and has had viral meningitis. His energy level is low and he currently take approx. 30 dilaudid a day for pain. Everything else has been tried, celiac plexus blocks, sandostatin shots, two surgeries. He had his gall bladder, spleen, and 1/3 of his pancreas removed in 1995. He had a thorascopic sympathectomy in 2000. This was for pain management but it failed. They suggested he try the pain pump, however, his GI at the Cleveland Clinic said he wouldn't do it. He is too young and they are afraid it may do additional damage to his veins/nerves. Are you the sufferer or the supporter? Thanks, Cristina Re: New member In a message dated 5/15/01 10:28:31 PM Central Daylight Time, crandall@... writes: > Hello, I am a new member to this group. My husband is the one > suffering from chronic pancreatitis. He has had it for about 6 years > now. He is actually in the hospital now and has been since Sunday. > I am looking for a group he can chat with. He truly needs to find > others who experience the same daily severe pain and learn what their > coping methods are. Hello - sorry that your husband is suffering from pancreatitis. what caused his? where do you live? is he home or still hospitalized? questions, questions. you will find many friends here and lots of moral support and answers to YOUR questions. it is so nice to have others to talk to that know exactly how you feel and what you are going through. welcome to the group! i hope that i can be helpful to you in some way., Debbie Sikes djssekis@... Arkansas Chapter Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 Shirley Thanks for your response. I would love to hear more about the islet cell allotransplantation. I did go to diabetes institute website and read some about it, but I would love to hear more from someone who has went thru the surgery. Did you have trouble getting the surgery authroized by your insurance? Do they do it alot on pancreatitis patients? Where did you have it done? We live in Ohio and I wonder if the Cleveland Clinic does the surgery. Sorry so many questions. Thanks again for your information. Cristina Re: New member In a message dated 5/15/01 11:28:19 PM Eastern Daylight Time, crandall@... writes: > > > Hello, I am a new member to this group. My husband is the one > suffering from chronic pancreatitis. He has had it for about 6 years > now. He is actually in the hospital now and has been since Sunday. > I am looking for a group he can chat with. He truly needs to find > others who experience the same daily severe pain and learn what their > coping methods are. Any response is appreciated. > Thanks and God Bless. > > > Hello, I am so sorry that your husband is a pancreatitis sufferer also. That means you suffer also. I know how terrible it is to suffer from chronic pancreatitis. Please tell your husband that I am thinking of him and praying for him and you. I had my pancreas removed and the islet from the pancreas transplanted into my liver so now I am cured of pancreatitis. I suffered from pancreatitis with just constant pain since 1985 and started having attacks in 1999. I was unable to eat since 1994 and had to live with tpn constantly. So as you can see I have been there and done that and I know what your husband is going through. It is so terrible. Your new friend, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 Hello , My name is , and I'm the sufferer, and I also live in Ohio.....Springfield to be exact. I know exactly where Grove City is, I've played in softball toury's there several times, even though it was years ago. I'm so sorry to hear about Mike. I'm courious, I've had pancreatitis since 1993.........did he see the doctors at Ohio State Univer. Hosp. before he went to the Cleveland Clinic? I'm just wondering because at Ohio State is where I got my very first acute attack after an ERCP. I won't tell you the doctor's name until after I hear your response. I now go to Indianapolis & I am being treated by Dr Lehman. I'm happy to see another person from my general area, even though you are at least an hour away, thats much closer than most people on this board! I hope you get the answers you need here on the board. There are alot of wonderful, caring, helpful, SMART people here, and I hope you & Mike will be as happy as I am that you found this place. Good Luck my friend, and please, let me know if there is anything I can do for you. WELCOME CHRISTINA & MIKE! Lots of Hugs & Love, (from Ohio) > Thanks for your reply. My husband is Mike and my name is Cristina. We live > just south of Columbus, OH in Grove City. His pancreatitis is ideopathic > and it began with an acute attack in 1994. He is in and out of the hospital > alot. Usually once every three months. His immune system is so low he also > gets pnemonia alot and has had viral meningitis. His energy level is low > and he currently take approx. 30 dilaudid a day for pain. Everything else > has been tried, celiac plexus blocks, sandostatin shots, two surgeries. He > had his gall bladder, spleen, and 1/3 of his pancreas removed in 1995. He > had a thorascopic sympathectomy in 2000. This was for pain management but > it failed. They suggested he try the pain pump, however, his GI at the > Cleveland Clinic said he wouldn't do it. He is too young and they are > afraid it may do additional damage to his veins/nerves. Are you the > sufferer or the supporter? > Thanks, Cristina > > Re: New member > > > In a message dated 5/15/01 10:28:31 PM Central Daylight Time, > crandall@c... writes: > > > > Hello, I am a new member to this group. My husband is the one > > suffering from chronic pancreatitis. He has had it for about 6 years > > now. He is actually in the hospital now and has been since Sunday. > > I am looking for a group he can chat with. He truly needs to find > > others who experience the same daily severe pain and learn what their > > coping methods are. > > Hello - sorry that your husband is suffering from pancreatitis. what > caused > his? where do you live? is he home or still hospitalized? questions, > questions. you will find many friends here and lots of moral support and > answers to YOUR questions. it is so nice to have others to talk to that > know > exactly how you feel and what you are going through. > welcome to the group! i hope that i can be helpful to you in some way., > > Debbie Sikes > djssekis@a... > Arkansas Chapter Representative > Pancreatitis Association, International > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Janet, Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that MSA or Multi-System Atrophy was a better name for Shy-Drager Syndrome, sporadic OPCA and SND. This email is to give you some introductory information about the disorder only. It should also clear up some misleading info on the internet. First of all, don't believe everything you read about MSA or Shy-Drager Syndrome. Our experience is that you could have 27 years yet. Many people have lived more than 20 years with it. There are new research results published every day. So much brain research has advanced since 1993, that there is now some hope a cure could be found in as little as five years. Concentrate on what you can do. Exercise does help keep movement. You need to start a daily exercise program now (everyday). In particular, you need to work on range of motion exercises (warm-ups or arthritis type). You must also work on speech exercises. Your volume will probably go down slowly and you will not know it, so get Rose's speech exercises and start them now. They are on this site http://groups.yahoo.com/group/shydrager/files/Various+MSA+Information+Sheets/Spe\ ech+%26+Swallowing/ Or if you can not reach that site try: http://freepages.health.rootsweb.com/~charmayn/ More exercises can be found at: http://www.cnsonline.org/www/archive/parkins/park-03.txt Another important item with MSA is the fact that your swallowing muscles tend to lose their strength and if you do not keep them exercised, you will lose some or all of your ability to swallow. Liquids in particular are difficult for many MSA patients. This can lead to dehydration and urinary tract infections (UTI). Infection of any type (UTI, pneumonia, blood, or even yeast) is dangerous to MSA patients. MSA patients often run a lower than normal " average " temperature, and may be running a fever at 98.6 degrees. It is important to know the patient’s “normal” temperature. Another problem which will probably face you is constipation. This is somewhat easier to control than other symptoms, but you do have to be aware of it and treat it. Many are able to treat it with stool softeners, diet or laxatives. Talk to your doctor about it. Sleep problems can also be a serious problem with the disorder. Often sleep apnea or REM problems crop up. If there is any problem with sleep check with your doctor as it could be serious. The doctor can decide if a sleep study is needed. To help the MSA patient, caregivers need to keep a log of symptoms. Daily temperature, blood pressure (BP), medicine schedules, and eating times are all important when it comes to deciding what treatment is best. Notes on when the patient felt best and was most active, as well as when they felt worst also help the doctor. The patient, caregiver and doctor must become a team to help the patient the most. To join the email list send a blank email message to: shydrager-subscribeegroups Stick with this list. All of the information above can lead to a longer life and quality of life for the MSA patient. We, the members of the list have accumulated a lot of valuable information which can help you. On doctors, look for a " movement disorder specialist " in your area. They are best (as a general rule, but not always) at helping you. Let us know what part of the country you live in and we may be able to help. Take care Bill and Charlotte Werre =================================================== pierotti@... wrote: > Hi > I have recently been diagnosed with msa - 2 years ago i was > diagnosed with Parkinsons and I have had a lot of difficulty finding > effective medications - now I know why. I am 46 years old with a > wonderful husband, Larry, and two children - is 13 and Annie is > 11. I am just learning about this disease and am grateful to have > found this site. > > Janet > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Janet, Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that MSA or Multi-System Atrophy was a better name for Shy-Drager Syndrome, sporadic OPCA and SND. This email is to give you some introductory information about the disorder only. It should also clear up some misleading info on the internet. First of all, don't believe everything you read about MSA or Shy-Drager Syndrome. Our experience is that you could have 27 years yet. Many people have lived more than 20 years with it. There are new research results published every day. So much brain research has advanced since 1993, that there is now some hope a cure could be found in as little as five years. Concentrate on what you can do. Exercise does help keep movement. You need to start a daily exercise program now (everyday). In particular, you need to work on range of motion exercises (warm-ups or arthritis type). You must also work on speech exercises. Your volume will probably go down slowly and you will not know it, so get Rose's speech exercises and start them now. They are on this site http://groups.yahoo.com/group/shydrager/files/Various+MSA+Information+Sheets/Spe\ ech+%26+Swallowing/ Or if you can not reach that site try: http://freepages.health.rootsweb.com/~charmayn/ More exercises can be found at: http://www.cnsonline.org/www/archive/parkins/park-03.txt Another important item with MSA is the fact that your swallowing muscles tend to lose their strength and if you do not keep them exercised, you will lose some or all of your ability to swallow. Liquids in particular are difficult for many MSA patients. This can lead to dehydration and urinary tract infections (UTI). Infection of any type (UTI, pneumonia, blood, or even yeast) is dangerous to MSA patients. MSA patients often run a lower than normal " average " temperature, and may be running a fever at 98.6 degrees. It is important to know the patient’s “normal” temperature. Another problem which will probably face you is constipation. This is somewhat easier to control than other symptoms, but you do have to be aware of it and treat it. Many are able to treat it with stool softeners, diet or laxatives. Talk to your doctor about it. Sleep problems can also be a serious problem with the disorder. Often sleep apnea or REM problems crop up. If there is any problem with sleep check with your doctor as it could be serious. The doctor can decide if a sleep study is needed. To help the MSA patient, caregivers need to keep a log of symptoms. Daily temperature, blood pressure (BP), medicine schedules, and eating times are all important when it comes to deciding what treatment is best. Notes on when the patient felt best and was most active, as well as when they felt worst also help the doctor. The patient, caregiver and doctor must become a team to help the patient the most. To join the email list send a blank email message to: shydrager-subscribeegroups Stick with this list. All of the information above can lead to a longer life and quality of life for the MSA patient. We, the members of the list have accumulated a lot of valuable information which can help you. On doctors, look for a " movement disorder specialist " in your area. They are best (as a general rule, but not always) at helping you. Let us know what part of the country you live in and we may be able to help. Take care Bill and Charlotte Werre =================================================== pierotti@... wrote: > Hi > I have recently been diagnosed with msa - 2 years ago i was > diagnosed with Parkinsons and I have had a lot of difficulty finding > effective medications - now I know why. I am 46 years old with a > wonderful husband, Larry, and two children - is 13 and Annie is > 11. I am just learning about this disease and am grateful to have > found this site. > > Janet > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Welcome, Janet, though sorry you are here. You are at the right place, though. I am here for my mother Joyce, who I lost in November due to complications. She was 71. She, too, like so many others (and like yourself) was diagnosed with PD at first. Her MSA diagnosis came a little under two years after the PD diagnosis. There are a host of symptoms and you will find information, I am sure, on all of them. One of the most important things is to exercise and not ignore sudden changes in symptoms. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Welcome Tori, I'm sure you will get a lot of information from this group. My son has different symptoms than yours...but I'm sending you warm wishes for a nice appt. with your new Dr.. Welcome to the group, I'm sure ther are plenty of people here who can help you. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Thanks Donna. Yes I'm trying not to get too excited about everything that is happening. I even called the neuro the other day after results were given to us and asked if someway the contrast he was given could have shown those results. Answer was no that there is deffinitely an abnormality. I just keep thinking this has to be a mistake. Since he is not seizing anymore and besides the fact that he is not doing what other babies his age are doing I think he is normal. It is hard to deny that fact that is temporal lobes where not touching the front part of his brain like they should be. Thanks for the encouragement, tori Donna Georg wrote: Tori,you will find a font of knowledge on this site. Sure mito disorders arescary but with all these "experts" you will feel a lot more comfortabledealing with it. If he isn't diagnosed conclusively still hang around.Sometimes the symptoms are similar to other children and the advice isinvaluable.Donna (mum to Lochie 7/20/00-7/20/01) new member Hi, my name is Tori and my husband and I have three children. Lydia 6,beautiful and typical and Sophia 2 1/2 also beautiful and typical w/anattitude and then there is Mr. Noah. He is 11 months and just gorgeousbut not typical. At 2 1/2 months w/normal developement to that point,he started doing little sit ups as we called them. Mistakenly dx asreflux a common mistake for Infantile spasms. Long story short was dxand the gamut of test run. Every test at that time came back normalthey included: MRI, CT scan, urine organic acids, amino acids, lumbarpuncture or spinal tap and ekg. The only abnormal was the EEG but wenew that because we could see the seizures. We were told as much as wewanted an answer for why he was seizing, it was better not to have causethat he had a better chance of just growing out of them. Jump down theroad a bit to 6/2/02, that was his last clinical seizure w/the help ofACTH How ever bcause of the seizures (we were told) he has developementdelay. He just started rolling both ways on fathers day and has prettygood head control but he is not sitting on his own or holding/graspingfor toys in his hands and doesn't like to stand. When he is on hisbelly, his legs move like he wants to crawl but he doesn't push upperbody off floor w/arms and speech is delayed also. He gets all thetherapies.Thinking we were past all the bad stuff, (we were told his delays wouldcatch up after seizure control) Noah had an MRI on 7/15. It came backabnormal this time. Three things were showing, first there was abnormalsignal in deep grey, brain stem and cerebellum. Then increased fluidaround brain not sure if that is undersized brain or atrophy of brainfrom the ACTH. Neurologist said it was hard to say. Lastly,underdeverloped temporal regions. Her conclusions were a metabolicdisease, either mitochonrial or orga nic acidemia or unknown.So what we have done is repeat all those test that came back normalbefore like the organic acids and amino acids. There was a lactatesomething ordered and a serum something order. We meet w/the geneticisttomorrow and are not sure what we will find out. I guess we are justwondering if anyone out there has any advise on where to go from here.What kinds of questions should we be asking the dr. tomorrow? I had acompletely normal preg. and c-section birth due to previous c-sections.Noah looks completely normal besides his delay. I just can't believethis is happening to us again just when we thought we were out of thewoods. Everything I look up on the net about metabolic diseases is sobleek and I haven't even brought myself to look up mito diseases. Ionly know it effects the cell and my knowledge ends there. I do knowthey're not good things to have and that is why I have put off knowinganym ore about them. Depending on the results to these repeated test, wewill probably have a skin and muscle biopsy.Any advise would be appreciated. Sorry this is so long I just wanted togive as much history and background as possible.Do I need to subscribe to the email listed on the home page at yahoo oris joining the group enough to receive replys via email?Thanks so much,ToriPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Tori. Welcome to the list. You should find a lot of info here and support as everyone of us has been where you are today. I am . I've been here on this list on and off for about 3 1/2 years. Another suggestion I would make is to go to www.umdf.org and get yourself as educated as you can be before the meeting with the geneticist. We, as patients and parents, do a lot of educating of the docs. Anyway, I wish you all the best. Please keep us all posted no matter what you find out. The one thing I would like to tell you is that sometimes even though people are told that it's not a mitochondrial disorder that it can be. Many of us have traveled hundreds to thousands of miles to get the best tests and finally a diagnosis from someone who is a little more efficient at making a diagnosis. If you need more info on these docs let us know!! HUGS!!!!!! I think you need them right now. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Tori Welcome to our group. Where do you live? Janelle McGuire Burlington, Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Tori I am glad that you found the Mito group. I am just receiving your message now so I am sure you have already seen the geneticist. Mito is very hard to diagnose. I think the majority here would agree and would urge you to get a fresh muscle biopsy if you ever get to that point. (You may not) I would ask for the following: *A post prandial feeding study *Total carnitine profile *Lactate/pyruvate ratio *If they are really thinking Mito, perhaps and ERG and MRS prior to doing a biopsy. *Skin biopsy is not very invasive. Baylor university in Texas is one of the top. Find out where they would send the sample. Different labs can make a big difference. What part of the country are you from?? Many on the list can point you to the right docs for your area. I am not quite sure what questions are important for your to have answered at this time. I can tell you, however, that your situation was mine this time last year. I now have a diagnosis and a much more vast knowledge of Mito. I would be happy to share any and all experiences. Just remember, this disease has a range like you could hardly imagine. Very mild to much more complex. If you ever should take a net surfing trip, try to keep that in mind. If possible, stay off many of the personal sites. At this point, they will only bother you. Sincerely, Bridget twillis@...Mom To Owen "water boy" Willis, 3.5 yrs, Complex 1 and Co Q 10 deficiency, PDD/NOS and the world's biggest belly laughand , 1 yr, developing well (thank God, everyday) new member Hi, my name is Tori and my husband and I have three children. Lydia 6, beautiful and typical and Sophia 2 1/2 also beautiful and typical w/an attitude and then there is Mr. Noah. He is 11 months and just gorgeous but not typical. At 2 1/2 months w/normal developement to that point, he started doing little sit ups as we called them. Mistakenly dx as reflux a common mistake for Infantile spasms. Long story short was dx and the gamut of test run. Every test at that time came back normal they included: MRI, CT scan, urine organic acids, amino acids, lumbar puncture or spinal tap and ekg. The only abnormal was the EEG but we new that because we could see the seizures. We were told as much as we wanted an answer for why he was seizing, it was better not to have cause that he had a better chance of just growing out of them. Jump down the road a bit to 6/2/02, that was his last clinical seizure w/the help of ACTH However bcause of the seizures (we were told) he has developement delay. He just started rolling both ways on fathers day and has pretty good head control but he is not sitting on his own or holding/grasping for toys in his hands and doesn't like to stand. When he is on his belly, his legs move like he wants to crawl but he doesn't push upper body off floor w/arms and speech is delayed also. He gets all the therapies.Thinking we were past all the bad stuff, (we were told his delays would catch up after seizure control) Noah had an MRI on 7/15. It came back abnormal this time. Three things were showing, first there was abnormal signal in deep grey, brain stem and cerebellum. Then increased fluid around brain not sure if that is undersized brain or atrophy of brain from the ACTH. Neurologist said it was hard to say. Lastly, underdeverloped temporal regions. Her conclusions were a metabolic disease, either mitochonrial or organic acidemia or unknown.So what we have done is repeat all those test that came back normal before like the organic acids and amino acids. There was a lactate something ordered and a serum something order. We meet w/the geneticist tomorrow and are not sure what we will find out. I guess we are just wondering if anyone out there has any advise on where to go from here. What kinds of questions should we be asking the dr. tomorrow? I had a completely normal preg. and c-section birth due to previous c-sections. Noah looks completely normal besides his delay. I just can't believe this is happening to us again just when we thought we were out of the woods. Everything I look up on the net about metabolic diseases is so bleek and I haven't even brought myself to look up mito diseases. I only know it effects the cell and my knowledge ends there. I do know they're not good things to have and that is why I have put off knowing anymore about them. Depending on the results to these repeated test, we will probably have a skin and muscle biopsy.Any advise would be appreciated. Sorry this is so long I just wanted to give as much history and background as possible.Do I need to subscribe to the email listed on the home page at yahoo or is joining the group enough to receive replys via email?Thanks so much,ToriPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Sammy was turned down for multi organ transplant (liver, pancreas and small intestine) by several pediatric transplant centers in the US last spring. One center took time to talk to every one of our doctors and several metabolic specialists in the country because they so wanted to give him the chance. But the consensus was that even if he survived the transplant surgery, and even if the new organs did not get affected, that the stress of the surgery coupled with the drugs to prevent rejection would actually hasten his death rather than prevent it. They felt he had a greater chance of staying alive without the transplant. It was/ is heart breaking but I trust them because they so clearly wanted to do what was best for Sammy and took months to look into it with us. Anne Re: new member When I was told that Lochie could not get a heart transplant if he had a mito disorder I was so scared for himDonnajust curious as to what their reasoning for this would be...can you share?Deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Hi Misie, Welcome to the group. Your daughter sounds totally different from my Mamie Rose, who will be 10 in January. But you've come to a good place and I'm sure there are people here who have been in your shoes. Again, welcome. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Misie, My heart does go out to you. even if this is not mito that you and your daughter are dealing with it still is aweful. It must be aweful to have a " healthy " child and it be ripped away from you. My was born 2 mo premature and did bad from beginning. after some time in nicu she came home with clean bill of health. she was developing fine, maybe a little behind(but 2 months premie) Around 6 months noticed some wierd eye stuff. So took her for an eye exam and they said she had small optic nerves(remind you she was a premie and had numerous eye exams and never noted before) Anyways, she was referred to a nuero and an mri showed periventricular luekomylasia. (cerebral Palsey)The nuero then told me and at follow ups that she was a very mild case and probally would have minimal deficits. Well never improved, just keep getting worse. She would gain a skill then loose. And with cp you should never regress. siezures began at 8 mo and severe on eeg(hypsarrythmia)So that is when docs started looking else where for poss meto/mito. Nothing showed. Just high lactic acid and ammonia. Went 4 more yrs with just cp dx but knew something else wasnt right. To make a long story short, after long tries by chicago docs to find an answer, we went to Cohen. He ran a few more tests and called with a dx of mito. which one still not sure, but he believes it is either dna depletion, alpers, or LCHAD. Chicago nuero(new) thinks it may be lieghs based on MRI results. But Anyways, Sam has global developmental delay, intractible siezures, g-tube, reflux, issues with her bowls, optic atrophy, and is both hypo and hyper tonic. She was in ICU in Jan for GI bleed, coagulopathy, siezures and muscle biopsy. In er they said she was in liver faliure, then it went to kidney failure, then cardiac, then pnuemonia, and + c-diff then hemeatology. They had no clue as to what or why this was going on with her. She had a mutily system thing that know one knew what to do. Her muscle biopsy was normal except for prominence in type1 fibers. But reported normal. Her lactic acid is up and down, so is ammonia. She has had abnormal urine organic and plasma amino acids. Dr. Cohen feels that he could pin down this mito with a liver biopsy, but treatment would not change. Sam continues to have good and bad days. The latest being a simple cold knocked her out. She sleep 20 of 24 hrs, started respiratory issues and bleeding issues again, and dehydrated so fast(even with me pushing 2l of fliud per day in her). Things sre so complex with this disease, and yes I still dont want it and just want her CP back. a part of me still feels that she does not have it. Call it denail or a coping mechanism. I am sure this is not the response you were looking for, but justed wanted to give ya Sams short story. Your daughter to me does exhibit sighns of mito, but that is just merely my opinion. And sighns of mito are also symptoms of so mant other things. What labs has been done? other than biopsy? Have you consulted with any miot specialists? I am here if you want to talk. and this group is the best. I have learned so much from them and come right to them when I am down or need to vent. You can say anytrhing and they (we) know the feeling. So please keep posting your feelings and concerns. We cant make this nightmare go away, but we can try to help you through it. Sorry so long. and sorry this is not the reponse you were looking for. mom to ,5,mito ,2,asthma >From: jonmis1313@... >Reply-To: Mito >To: Mito >Subject: new member >Date: Tue, 29 Oct 2002 14:54:49 EST > >HI MY NAME IS MISIE >I HAVE A DAUGHTER THAT IS ALMOST 8YEARS OLD. 2YEARS AGO SHE GOT REALLY SICK >THE DOCTORS THOUGHT SHE HAD THE FLU BUT AFTER A FEW DAYS WENT BY SHE WAS >GETTING VERY WEAK AND SHE COULDN'T STAND OR EVEN HOLD A POPSCIAL. SHE >STARTED >LOOSING CONTROL OF HER BLADDER HER HANDS AND FEET STARTED TO TURN PURPLE >AND >COLD. NONE OF THE DOCTORS COULD FIGURE OUT WHAT WAS GOING ON. A COUPLE >DAYS >WENT BY AND THERE WAS NO IMPROVEMENT AND SHE HAD TO BE PUT IN THE HOSPITAL >BECAUSE SHE WAS SO DEHYDRATED THAT IT TOOK THEM HOURS TO TR Y AND DRAW >BLOOD(TO MAKE A VERY LONG STORY SHORT) SHE ENDED UP BEING TRANSPORTED TO A >CHILDERN'S HOSPITAL AND THERE WE FOUND OUT THAT HER IMMUNE SYSTEM ATTACKED >HER SPINE (POST INFECTIOUS INFLAMATORY MYELITIS) THE DOCTORS SAID SHE 'LL >RECOVER AND BE ABLE TO WALK AGAIN. 2 WEEK FROM LEAV ING THE HOSPITAL SHE >DEVELOPED SEVERE SCOLIOSIS. WE TOOK HER TO SEE A ORTHO DOCTOR AND HE SAID >HE >HAD NEVER SEEN ANYONE DEVELOP SOCOLOSIS THIS SO SEVERE AND SO FAST. SHE HAD >2 >BODY CAST AND BRACE AND BEFORE THE YEAR WAS OVER SHE HAD TO HAVE A ROD >PLACED >IN HER BACK. SURGERY WENT FINE. A COUPLE WEEKS WENT BY SHE WAS HAVING PAIN >,GETTING SICK BECOMING LETHARGIC I BROUGHT HER TO THE DOCTOR SHE HAD TO BE >FLOWN TO CHILDERN'S HOSPITAL WHERE SHE SPENT 31/2MONTHS IN THE INTENSIVE >CARE >UNIT. SHE HAD TO BE PUT ON A RESPIRATOR A CHEMICAL COMA SHE HAD MUTI ORGAN >FAILURE HER KINDNEYS LIVER LUNGS BLEEDING ULCER, CHICKEN POXS,STROKE >SEIZURE >PANCRETITS MASSIVE MUSCLE WASTING THEY TRIED THIS EXPERIMENTAL DRUG NITRIC >OXIDE TO HELP WITH HER BREATH BECAUSE SHE ALSO HAD PNEUMONIASEVERAL TIMES. >THEY DID BIOPSIES ON MUSCLE,LIVER,KIDNEY,NERVE AND SKIN TESTING IT FOR ONE >THING A MITO DISEASE. CAME BACK NEGATIVE. WE TOOK HER TO MAYO TWICE THIS >SUMMER DR.WHITEMAN SAID HE WAS PRETTY POSITIVE IT WAS A MITO DISEASE SO >WHEN >MY DAUGHTER ALLY HAS SURGERY AGAIN IN NOV.OR DEC. FOR HER ROD IN HER BACK >THIER GOING TO TEST IT AGAIN FOR A MITO DISEASE. THE DOCTORS SAID ALLY IS A >VERY COMPLEX XCHILD .SOME OF HER SYSPTOMS SEEM TO FIT BUT IT SEEMS LIKE >FROM >WHAT I READ ON HER THAT THERE NOT AS BAD AS ALL OF YOURS ARE.SHE HAD 1 >STROKE >1 MAYBE 2 SEIZURE AND SHE HASN'T HAD THEM SINCE (THANK GOD) SHE DOEN'T WALK >ANYMORE. SHE HAS PROBLEMS WITH HER BLADDER SOMEWHAT I HAVE TO CATH HER >4TIMES >A DAY SHE HAS TO BE TUBE FEED BECAUSE SHE HAS A PROBLEM GAING WEIGHT. SHE >IS >ALMOST 8 AND SHE WEIGHS 37 POUNDS SHE WEIGHED 38 2 YEARS AGO BEFORE >ANYTHING >HAPPENED TO HER. IT IS HARD TO ACCEPT THIS WHEN SHE WAS BORN SHE WAS >HEALTHY >10LBS.1OZ BABY SHE WAS FINE U P UNTIL 2 YEARS AGO. WHEN I READ THESE >STORIES >I FEEL SO SORRY FOR ALL YOU AND KNOW I READ ONE E-MAIL MONDAY FROM JULIE >AND >THINK I SAME THINGS I DON'T WANT THIS DISEASE AND DON'T WANT TO MAKE THESE >DIFFICULT DECISIONS I SON'T WANT ANY OF THIS I WANT MY CHILD TO RUN AND BE >A >KID SHE ONCE WAS!!!!!!!!!!!!! IT'S DIFFERENT WHEN YOUR CHILD IS BORN WITH >AND >PROBLEMS RIGHT FROM THE BEGINNING NOT WHEN THEY WERE PERFECTLY HEALTH AND >THEN BOOM ONE DAY YOUR CHILDS LIFE HAS TOTALLY CHANGED!!! SO ANYWAYS IF THE >BIOPSIES COME BACK NEGATIVE FOR MITO I DON'T KNOW WHAT TO DO NO ONE CAN >FIGURE HER OUT OR HELP HER WALK. I WOULD TAKE ALL THAT HAS HAPPENED TO HER >AND ALL THE PROBLEMS SHE HAS BUT I WANT HER TO WALK!!!!!!!!! HAS ANYONE'S >CHILD HAVE ANY OF THESE SYSTOMS. PLEASE LET ME KNOW >THANKS MISIE _________________________________________________________________ Internet access plans that fit your lifestyle -- join MSN. http://resourcecenter.msn.com/access/plans/default.asp Quote Link to comment Share on other sites More sharing options...
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