Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 In a message dated 1/2/01 9:17:01 PM, duodenalswitchegroups writes: << I am relatively new to this group. I have emailed a few individually. I am looking for someone who is about my age and BMI (50 & 56) who is postop and could answer some questions for me regarding preop preparation and how their postop course has gone. I am awaiting insurance approval for a lap DS with Drs. Rabkin and Jossart (in San Francisco) hopefully in February. Thanks for being out there and willing to help. Sandy >> Sandy, I'm fairly close. I'm 50, 5'6 " , and had a BMI of 53. Dr. Rabkin and Jossart did my surgery on 10-3-00. I've had a remarkable recovery and would be glad to answer any questions you might have. Email me here or privately, if you wish. Good luck, Debby in Modesto Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 In a message dated 6/10/01 2:07:07 PM Eastern Daylight Time, basicdent@... writes: > Hi > I'm Min (short for Mina) and new to the list. I had an open RNY with Panni > on 02/08/00. I started at 319 and am now about 195-200. The bad news is I > haven't lost anything in months and can eat almost anything-and do I am > exercising 3-4 times a week at the local JCC but that hasn't changed my > measurements or weight thus far (just started about 3 weeks ago). I need > to > lose about 50 more lbs. My surgeon, Dr. Marema in Ft Lauderdale wants me at > 141. I don't know that I'll ever get there, but he also says that most > people gain back 20-30 lbs after goal, so I guess I should aim for that > weight. > > I am wondering, do you folks find that weight gain to be true? Also, > Marema > recommends (highly) an all protein diet during weight loss. This is > extremely difficult to maintain. I did it for about the first 3 months > post > op, then started added veggies and some starches. I now eat a lot of fruit > as it goes down easily. Still can't eat chicken, but can eat most other > protein foods. Also get hungry every 2-3 hours (that happened b4 surgery > as > well) and find I'm eating too much throughout the day. > > Any advice would be appreciated as I would hate to stay at this weight > after > all I've been through (another story!). > > TIA > Min in Boynton Beach Fl > Min, You really did not say anything about exercise -- and so far as I can tell, that is a very important component of this. I have found that I have consistently lost weight, well after a year, by exercising -- especially by pushing myself harder and harder. It not only lost weight but the shape of my body is different and it has enhanced my overall well-being. If you are not exercising, I would give this a shot. se Baltimore, MD Open RNY 11/22/99, Dr. Sweet, Reading, PA 11/22/99 324, BMI 51 12/6/99 301, BMI 47 1/27/00 280, BMI 44 2/22/00 270, BMI 42 3/16/00 262, BMI 41 5/31/00 244, BMI 38 (no longer extremely obese... just plain obese) 7/22/00 224, BMI 35 9/23/00 220, BMI 34 (and still obese) 10/16/00 216, BMI 34 11/7/00 210, BMI 33 (65 pounds from goal!!!) 5/8/01 196, BMI 31 (new goal 157; I am 5'7 " that would give me a BMI of 24.6; 39 pounds to go) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 If you do what you always did, (diet) you'll get what you always got (depravation induced rebound eating and subsequent weight regain). *I* didn't go on, nor did my surgeon recommend an all protein or high protein diet. I personally learned to listen to what my body wanted and obey it in its wisdom and I believe perfection. From what I have observed in my live group and on the OSSG lists, many people that take the weight off very fast because of dietary restriction (as opposed to because of their particular procedure), and lose most all their excess weight before their first anniversary, are more likely to regain significant amounts of weight. This is just a common pattern I have noticed. I didn't/couldn't/wouldn't diet post op, but I do respect my body and what it needs. I am 2 1/2 years post op and still losing weight. I don't count calories, grams of anything or read labels other than for sugar content. I don't weigh myself and when I weigh at the doctor I turn and face away from the scale. Pounds don't matter, health does. The key to my success has been the book " The Seven Secrets of Slim People. " It taught me to pay attention to and respect the physical signs of hunger and satisfaction (Vs fullness). Anytime we eat past the physical requirements of our body, our body will store it. While the body is storing excess, it can't be using excess weight to meet its energy requirements. The book explains how this physiology works. One of the important factors in losing weight naturally is to respect physical hunger at all times. I personally don't see any reason why you can't lose any excess weight you may still be carrying without having to lose extra to leave leeway for weight regain . . . ) Vicki In a message dated 06/10/2001 11:07:08 AM Pacific Daylight Time, basicdent@... writes: > Hi > I'm Min (short for Mina) and new to the list. I had an open RNY with Panni > on 02/08/00. I started at 319 and am now about 195-200. The bad news is I > haven't lost anything in months and can eat almost anything-and do I am > exercising 3-4 times a week at the local JCC but that hasn't changed my > measurements or weight thus far (just started about 3 weeks ago). I need to > > lose about 50 more lbs. My surgeon, Dr. Marema in Ft Lauderdale wants me at > 141. I don't know that I'll ever get there, but he also says that most > people gain back 20-30 lbs after goal, so I guess I should aim for that > weight. > > I am wondering, do you folks find that weight gain to be true? Also, Marema > > recommends (highly) an all protein diet during weight loss. This is > extremely difficult to maintain. I did it for about the first 3 months post > > op, then started added veggies and some starches. I now eat a lot of fruit > as it goes down easily. Still can't eat chicken, but can eat most other > protein foods. Also get hungry every 2-3 hours (that happened b4 surgery as > > well) and find I'm eating too much throughout the day. > > Any advice would be appreciated as I would hate to stay at this weight after > > all I've been through (another story!). > > TIA > Min in Boynton Beach Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 You really did not say anything about exercise -- and so far as I can tell, that is a very important component of this. I have found that I have consistently lost weight, well after a year, by exercising -- especially by pushing myself harder and harder. It not only lost weight but the shape of my body is different and it has enhanced my overall well-being. >>>>>>> as much as I hate to admit it - the " E " word was always negative in my mind - exercise is a vital key to success. although I waited over 2 yr. since surgery to start to exercise, it is only a few months and I see major changes rather quickly. the most dramatic is in the upper leg, lower butt area - I did not feel at all self conscious wearing a swimsuit or tankini in florida last week as compared to the days of needing a suit with a skirt to hide the legs. even after the weight loss I still felt I needed the skirt to hide the skin on the upper legs. not this year - not since I started the power walking program. while away I also went to the gym with my niece and did a ton of swimming, mostly in the ocean and could really feel the muscles changing in my upper arms. beach walking works the toes like I never imagined. anyhow - any exercise is better than none and the more you do the more addictive it becomes. I find the more physical I am the less I want to eat, have time to eat, etc. Sue [swVA - wishing she was still in florida] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 missi welcome kimberly-jason 17months w/cf and kalvin 8 w/out > Hi, > My name is Missi and my daughter Emma (16 months) has CF. She was > diagnosed at 8 months old after many months of searching for the > problem. She was diagnosed with failure to thrive at 4 months and it > took a while to pinpoint the problem. After much research on FTT I > begged the doctor to run a sweat test although he almost didn't since > her lungs were fine. Much to his surprise her test was positive > (reconfirmed with DNA) but really it was a huge relief to finally > have a diagnosis for her. At 8 months she was 21 inches long and > weighed 9 1/2 lbs. In hindsight she had all the classic symptoms of > pancreatic insufficiency and she was also very salty. I had > suspicions of cf from about 5 months, but supressed them hoping it > would go away. > Fast forward to today, Emma is now 16 months old, 30 inches tall, 22 > lbs. and finally on the weight charts!!! (My biggest thrill so far) > She is mobile, but not walking yet as she still has some catching up > to do. She is very bright, verbal and very clever. We see a > fantastic cf team, without them I would be lost. > We share the same PT troubles as the rest of the parents of kids this > age so after reading this board it's nice to know we're not alone. > We are forunate however that she enjoys her TOBI treatments. > I would like to thank Torsten for informing me about this group since > the boards have so much information that is relevant for our > situation. > Missi mom of Emma 16 mo. w/cf and Matt 2 mo. wo/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 missi welcome kimberly-jason 17months w/cf and kalvin 8 w/out > Hi, > My name is Missi and my daughter Emma (16 months) has CF. She was > diagnosed at 8 months old after many months of searching for the > problem. She was diagnosed with failure to thrive at 4 months and it > took a while to pinpoint the problem. After much research on FTT I > begged the doctor to run a sweat test although he almost didn't since > her lungs were fine. Much to his surprise her test was positive > (reconfirmed with DNA) but really it was a huge relief to finally > have a diagnosis for her. At 8 months she was 21 inches long and > weighed 9 1/2 lbs. In hindsight she had all the classic symptoms of > pancreatic insufficiency and she was also very salty. I had > suspicions of cf from about 5 months, but supressed them hoping it > would go away. > Fast forward to today, Emma is now 16 months old, 30 inches tall, 22 > lbs. and finally on the weight charts!!! (My biggest thrill so far) > She is mobile, but not walking yet as she still has some catching up > to do. She is very bright, verbal and very clever. We see a > fantastic cf team, without them I would be lost. > We share the same PT troubles as the rest of the parents of kids this > age so after reading this board it's nice to know we're not alone. > We are forunate however that she enjoys her TOBI treatments. > I would like to thank Torsten for informing me about this group since > the boards have so much information that is relevant for our > situation. > Missi mom of Emma 16 mo. w/cf and Matt 2 mo. wo/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Welcome to the list, Missi! So good to hear that Emma is doing so well now--you know, sometimes I wonder about doctors! Gets so frustrating hearing about how long it takes some kids to be diagnosed. , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Re: Introduction Missi Welcome to the list! It always amazes me how many pediatricians do not consider CF unless the kids have obvious pulm. symptoms. someone needs to do some widespread training of these peds. sounds like you did a good job on your own though. Take care, PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Welcome to the list, Missi! So good to hear that Emma is doing so well now--you know, sometimes I wonder about doctors! Gets so frustrating hearing about how long it takes some kids to be diagnosed. , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Re: Introduction Missi Welcome to the list! It always amazes me how many pediatricians do not consider CF unless the kids have obvious pulm. symptoms. someone needs to do some widespread training of these peds. sounds like you did a good job on your own though. Take care, PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2001 Report Share Posted August 31, 2001 , This may help you understand dysautonomia. Also if your doctor is talking over your head, make him explain it in common terms or, have him write it down so you can look it up later. You are paying him, not the other way around. As his employer, you deserve an understandable explanation. God Bless, Jim Stark > Larry, > > Thanks so much for sharing your struggle. It is encouraging to know that > others really have been in the same shoes. I am grateful that I have never > fallen much except for tripping. That has to be very frustrating. > > You mentioned " dysautonomia " What is that? That is the same word my neuro > used yesterday along with a couple other long words. Do you get much > benefit from Sinemet? He told me that if I had that, (what ever he said) he > expected better response to Sinemet than I had. > > Meigs > davidmeigs@... > Meigs Family Webpage: > http://home.earthlink.net/~davidmeigs/index.html > introduction > > > Greetins, > > I'm Larry, I'm 53 years old, married and live in Tucson, AZ. I > corresponded with a few members on the list, but I felt it was time > to introduce myself. > > In the late 80's I developed a " dip " in my right leg as I walked. my > doc said that I probably had a week knee. Then in 1998, I fell off a > printing press and broke my thumb. I thought I was clumsy. By 1990 I > had been diagnosed with a partial complex seizure disorder and was > taking Tegretol. Since I was only falling down once every three to > four months, I didn't think it was a big deal to have a seizure that > often. I had an Uncle with Epilepsy. By 1996, it was starting to > bother me that I was falling down about every two to three weeks. But > since I would just fall out of the blue, with no warning what so ever > and get right up again, I figured these " seizures " where just > something that I would have to live with. The seizures were like a > light switch being turned off, then on immediately. One second I'm > standing, whoops, the next second I'm picking myself off of the > ground. Sometimes I'd be confused and not know what I'd been talking > about, so unless the other(s), remembered what we were talking about, > that conversation was over. Other times I might need to take a nap if > I was at home. > > By 1997, I was having problems with swallowing. Not so much as in the > actual swallowing part, but getting food to move down my esophagus > into my stomach. Kind of like an air bubble, or basket ball that > takes it's sweet time getting on down. My wife can finish her meal > days before I'm half way done. Some times I just give up in the > middle of a meal. > > By 1999, I was falling down 5 to 8 times a day at work plus a couple > times at home at night. Then it hit me, Doc, if I'm having seizures > wouldn't I be dropping stuff that's in my hands? Well I wasn't > dropping thins, I was just falling down. " So lets find out what is > going on " . > > First neurologist, Orthostatic Hypotesion was his thoughts, but our > ins. changed and I couldn't see him any more. > > Second neuro guy, Narcolepsy/Cataplexsy. So it was a sleep study. > blood tests, MRI. I didn't have that stuff. But 9/20/200, I had a TIA > or CVA that basically left my left side with a tingling/numbness for > the next five months or so, but no apparent lasting damage. A whole > bunch of tests were done, CAT scan, blood work, EKGs, echocardiogram, > doppler carotid artery scan, and what ever. All normal of course. > Another MRI and a MRA, Normal. The neuro guy came up with this, " Yuo > have me stumped, I don't know what is wrong with you. It's in your > head, I think you're crazy. " WHAT! Inever saw him again. But now I > started wondering if it was indeed in my head. Was I really falling > on purpose? All those years? All those times per day? A lot of them > really hurt! Na, he's an idiot. > > My pcp thought I should see a cardioloist. I'm game. The Holter > Monitor I thought would show something. After all I did fall down a > couple of times wearing that thing. By now I was excited that they > would find anything wrong. My wife asked if I wanted something to be > wrong with me? No I didn't, but they can't fix me if nothing is > wrong. Once again nothing was found wrong, it was NORMAL. > > I was laid off agian on 12/27/2000, this job lasted seven months. > Well what do you expect, I was laying down on the job to much, ha. By > now I was using a cane to help me get around, Jan. 2001. At my dear > wife's suggestion, I finnally started using it and found out that I > could actually catch myself some times. I thought I looked quite > stupid because sometimes, even though I didn't fall all the way down, > I would go half the way down on one knee or get stuck some where in > beteeewn that. I also thought that I was getting short of breath > because of the energy used to catch myself, which seemed like every > few steps. By the first part of Feb. 2001, my wife and I figured that > by that summer I would be in a wheelchair. > > One of my pcp's, (primary care phycision), suggestions was a Tilt > Table Test, which was scheduald for 2/21/2001. I thinking that it > would be another test turning out normal didn't think twice about my > wife not being able to come with me because of her work, and drove > myself to the hospital. Guess what? It wasn't normal. > > Strapped to a table in a dimmly lit room, I thought was kind of > relaxing. Then I was tilted up. Shortly I told the lady that I didn't > feel too good, my arms got real heavy, then my lips started tingling. > Then I yawned, and for a breif moment I felt okay...That was tha last > thing I did before I flat lined for 24 seconds. > > WOW! When I awoke I was floppin' around on the table so much that > they restrapped me down. My first question was, was I having a > seizure.It was the shot of dopamine and my own adrenaline The Doc > apologized for hitting me in the chest twice, like I cared at the > time, and told me what had happened, and that I would need a > pacemaker. I ws ready for it right then and there, but the Doc said I > had to wait until tomorrow. What excitement! > > The pacer went off with no problems. Immediately I felt a lot better, > I hadn't realized how bad I had felt for so long.I didn't fall for > about five weeks. Oh Yes! On 4/4/2001 I started working again and > started falling the very first day. In June, I went for a whole week > with no falls, why I don't know. But one day I fell 14 times at work, > but usually I only fall 2 to 4 times now at work and maybe 1 or 2 > times at home. Once in a while I'll fall before I go to work. > > On 8/02/2001, I had another TIA. I still have the tingling/numbness, > (again), and heavy left arm, leg, eye lid, etc. I feel it will > resolve it's self again, but I wonder if these arn't strokes but > really have to do with the MSA and/or the NCS, (neurocardiogenic > syncope)? > > I still drive, because I only fall when I'm standing, but I've notice > that my wife gets more nervous when I'm driving lately. We've > dicussed that fact that I may have to stop some day. I know that > she'll be a better judge of that than me. I,ve only ridden my motor > cycle twice since the first of this month and it is killing me, but > my Darlin' worries a lot. > > I take Florinef, 0.1mg two tabs/ day and Midodrine, 10mg, three > times/day, and tegretol 400mg xr once/day. Try to drink more water, > add salt to my food (yuck), and drink a 32oz bottle of Gatorade per > day. I've been diagnosed with NCS, as well as dysautonomia/Shy-Drager > Syndrome, (that's just MSA isn't it?). > > Ihope I didn't bore you all to death, but I figured that I might as > well give you the whole story. I've had six jobs in the last two > years, layoffs you know, (right). I do fall down on the job a lot > though, ha. At least I am able to work for now. > > Until later, > Larry in Tucson > > > 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 31, 2001 Report Share Posted August 31, 2001 , This may help you understand dysautonomia. Also if your doctor is talking over your head, make him explain it in common terms or, have him write it down so you can look it up later. You are paying him, not the other way around. As his employer, you deserve an understandable explanation. God Bless, Jim Stark > Larry, > > Thanks so much for sharing your struggle. It is encouraging to know that > others really have been in the same shoes. I am grateful that I have never > fallen much except for tripping. That has to be very frustrating. > > You mentioned " dysautonomia " What is that? That is the same word my neuro > used yesterday along with a couple other long words. Do you get much > benefit from Sinemet? He told me that if I had that, (what ever he said) he > expected better response to Sinemet than I had. > > Meigs > davidmeigs@... > Meigs Family Webpage: > http://home.earthlink.net/~davidmeigs/index.html > introduction > > > Greetins, > > I'm Larry, I'm 53 years old, married and live in Tucson, AZ. I > corresponded with a few members on the list, but I felt it was time > to introduce myself. > > In the late 80's I developed a " dip " in my right leg as I walked. my > doc said that I probably had a week knee. Then in 1998, I fell off a > printing press and broke my thumb. I thought I was clumsy. By 1990 I > had been diagnosed with a partial complex seizure disorder and was > taking Tegretol. Since I was only falling down once every three to > four months, I didn't think it was a big deal to have a seizure that > often. I had an Uncle with Epilepsy. By 1996, it was starting to > bother me that I was falling down about every two to three weeks. But > since I would just fall out of the blue, with no warning what so ever > and get right up again, I figured these " seizures " where just > something that I would have to live with. The seizures were like a > light switch being turned off, then on immediately. One second I'm > standing, whoops, the next second I'm picking myself off of the > ground. Sometimes I'd be confused and not know what I'd been talking > about, so unless the other(s), remembered what we were talking about, > that conversation was over. Other times I might need to take a nap if > I was at home. > > By 1997, I was having problems with swallowing. Not so much as in the > actual swallowing part, but getting food to move down my esophagus > into my stomach. Kind of like an air bubble, or basket ball that > takes it's sweet time getting on down. My wife can finish her meal > days before I'm half way done. Some times I just give up in the > middle of a meal. > > By 1999, I was falling down 5 to 8 times a day at work plus a couple > times at home at night. Then it hit me, Doc, if I'm having seizures > wouldn't I be dropping stuff that's in my hands? Well I wasn't > dropping thins, I was just falling down. " So lets find out what is > going on " . > > First neurologist, Orthostatic Hypotesion was his thoughts, but our > ins. changed and I couldn't see him any more. > > Second neuro guy, Narcolepsy/Cataplexsy. So it was a sleep study. > blood tests, MRI. I didn't have that stuff. But 9/20/200, I had a TIA > or CVA that basically left my left side with a tingling/numbness for > the next five months or so, but no apparent lasting damage. A whole > bunch of tests were done, CAT scan, blood work, EKGs, echocardiogram, > doppler carotid artery scan, and what ever. All normal of course. > Another MRI and a MRA, Normal. The neuro guy came up with this, " Yuo > have me stumped, I don't know what is wrong with you. It's in your > head, I think you're crazy. " WHAT! Inever saw him again. But now I > started wondering if it was indeed in my head. Was I really falling > on purpose? All those years? All those times per day? A lot of them > really hurt! Na, he's an idiot. > > My pcp thought I should see a cardioloist. I'm game. The Holter > Monitor I thought would show something. After all I did fall down a > couple of times wearing that thing. By now I was excited that they > would find anything wrong. My wife asked if I wanted something to be > wrong with me? No I didn't, but they can't fix me if nothing is > wrong. Once again nothing was found wrong, it was NORMAL. > > I was laid off agian on 12/27/2000, this job lasted seven months. > Well what do you expect, I was laying down on the job to much, ha. By > now I was using a cane to help me get around, Jan. 2001. At my dear > wife's suggestion, I finnally started using it and found out that I > could actually catch myself some times. I thought I looked quite > stupid because sometimes, even though I didn't fall all the way down, > I would go half the way down on one knee or get stuck some where in > beteeewn that. I also thought that I was getting short of breath > because of the energy used to catch myself, which seemed like every > few steps. By the first part of Feb. 2001, my wife and I figured that > by that summer I would be in a wheelchair. > > One of my pcp's, (primary care phycision), suggestions was a Tilt > Table Test, which was scheduald for 2/21/2001. I thinking that it > would be another test turning out normal didn't think twice about my > wife not being able to come with me because of her work, and drove > myself to the hospital. Guess what? It wasn't normal. > > Strapped to a table in a dimmly lit room, I thought was kind of > relaxing. Then I was tilted up. Shortly I told the lady that I didn't > feel too good, my arms got real heavy, then my lips started tingling. > Then I yawned, and for a breif moment I felt okay...That was tha last > thing I did before I flat lined for 24 seconds. > > WOW! When I awoke I was floppin' around on the table so much that > they restrapped me down. My first question was, was I having a > seizure.It was the shot of dopamine and my own adrenaline The Doc > apologized for hitting me in the chest twice, like I cared at the > time, and told me what had happened, and that I would need a > pacemaker. I ws ready for it right then and there, but the Doc said I > had to wait until tomorrow. What excitement! > > The pacer went off with no problems. Immediately I felt a lot better, > I hadn't realized how bad I had felt for so long.I didn't fall for > about five weeks. Oh Yes! On 4/4/2001 I started working again and > started falling the very first day. In June, I went for a whole week > with no falls, why I don't know. But one day I fell 14 times at work, > but usually I only fall 2 to 4 times now at work and maybe 1 or 2 > times at home. Once in a while I'll fall before I go to work. > > On 8/02/2001, I had another TIA. I still have the tingling/numbness, > (again), and heavy left arm, leg, eye lid, etc. I feel it will > resolve it's self again, but I wonder if these arn't strokes but > really have to do with the MSA and/or the NCS, (neurocardiogenic > syncope)? > > I still drive, because I only fall when I'm standing, but I've notice > that my wife gets more nervous when I'm driving lately. We've > dicussed that fact that I may have to stop some day. I know that > she'll be a better judge of that than me. I,ve only ridden my motor > cycle twice since the first of this month and it is killing me, but > my Darlin' worries a lot. > > I take Florinef, 0.1mg two tabs/ day and Midodrine, 10mg, three > times/day, and tegretol 400mg xr once/day. Try to drink more water, > add salt to my food (yuck), and drink a 32oz bottle of Gatorade per > day. I've been diagnosed with NCS, as well as dysautonomia/Shy-Drager > Syndrome, (that's just MSA isn't it?). > > Ihope I didn't bore you all to death, but I figured that I might as > well give you the whole story. I've had six jobs in the last two > years, layoffs you know, (right). I do fall down on the job a lot > though, ha. At least I am able to work for now. > > Until later, > Larry in Tucson > > > 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 September 15, 2001 Report Share Posted September 15, 2001 dear I also have a sixteen year old son and a daughter that is twenty three. I have not told them exactly what is wrong with me . They know I lose my balance and that I can slur my words. I have not called it MSA or told them that it is going to get worse.I am 57 years old and am still working part time.My son is doing great inb school,he is about to become an eagle scout,on the golf team and in the jazz band . My daughter works for ABC. Bottom line ,Why tell them and disrupt their lives. ? As the MSA gets worse Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 Dear We do understand. It is not easy. If you have specific questions don't be afraid to put them on the screen. You will receive help. Be strong. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 GFKN Your children sound great. Get as pleasure as you can from them. When the time comes to tell them, they will be strong. I have two beautiful daughters and four great grandchildren. My daiughter moved to Florida to be with us and give us a helping hand. I am blessed to have caring children. One other word of advice. Keep working as long as you can. It is the best therapy. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 , My heart goes out to you. There are people on this list who are very knowledgeable, & they have certainly been there for me. Welcome to the list, Introduction Hi, My name is and my father was diagnosed with Shy Drager in January. Unfortunately he is now in a home since I could no longer take care of him. I just found this site in the beginning of the week but with the tragedy and how many people it's affected, I decided to wait to introduce myself. My father is 62 and has been ill for a long time before they diagnosed him. Like everyone else they said PD not SDA. I am trying to obtain as much information as I can so I can speak with his nurses and doctors They are great people. Every I have a question they sit down with me and talk and explain everything. If I believe serious changes happen (with him it's about every 4 to 6 months) we go back to the specialist and have him evaluated. I am only 37 and have been dealing with doctors trying to figure out what's wrong with him for 4 years. My mother couldn't handle it anymore and I am now the main care person. She comes from Florida to visit every few months but I make all the decisions. I don't want to sound like I'm complaing but most of the time I'm just scared. Hope you all can understand. Any advice to help will be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 hi! I am a mom too. My diag. was changed from SDS to sortof combination of neuro and autonomic systems symptoms. I got sick when my son was in 6th grade. He is now in his first year of college out of state. I know it is hard not to feel guilty regarding ur sons, but counseling did help alot to deal with being young and ill. How old are ur sons? What do u like to do? When my son was younger we made a ginger bread house (well he did most of it). nancy m. The docs first diag me with SDS then changed it. lawandajbell@... wrote: > > Hello all, Mr. Summers gave me this address when I talked with him on > the 10th. Then he had to write me back with the address because I > abbreviated some words and did not know what I had abbreviated. > The last 6 weeks (including this week) have been the hardest I have > ever had to face. I am 39-today, and 6 Weeks ago was hospitalized > because I was very ill. I spent 8 days and what seemed like a > thousand tests in the hospital and on Friday, August 3rd at 11:30 p.m. > one of the many doctors who saw me and told me that I have Multiple > System Atrophy. The nuerologist(?) said that multiple areas of my > brain were affected. Then he informed me that I was hypotensive, > which I had no idea about that. That was why I was " near " fainting, > falling down, etc. I had thought (at least for the past 6 mos or so) > that my bp was high - 200/150. Of course it was always (before > hospital) taken sitting down. My heart rate would run anywhere from > 70 to 165. Few of the doctors I had seen had made any comments on > this. They all thought it was because of the mystery infection that I > had. Anyway, I learn all of this, then come to some kind of grip, not > sure what kind yet. My 65 year old mother-whom I was taking care of > (I thought) is now my care giver. I also have two boys. She has to > take over much of thier care. And boy do I ever feel guilty about > that. Then on the 10th I decided to write here the next day and BOOM > America is changed forever. I did not want to write during that awful > time and make it seem like I was whining (feeling guilty again) and > today I couldn't cry real tears and got mad. My mother made me feel a > little better by telling me she would put the " tears " in my eyes so I > could cry if I wanted her to. At least I smiled at that. Then to > put it all down to a very bad day it is my birthday and my boys forgot > and my mother is sick and I haven't been " up " to makeing my own cake. > > About the florinef. That is what I am on right now. .1 mg. I never > really understood why except the dr told me I needed it to boost up my > pressure. He told me to drink plenty of water (I thought that was > because I stopped sweating) and increase my salt intake. But he did > not say by how much. So now I am wondering if I increased it enough. > > Thank you all for being here and reading. > > LaWanda > > 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 September 15, 2001 Report Share Posted September 15, 2001 Hi , So sorry you have to be here. I think you'll find lots of support and great information, though. Your father was dx at the same time my father was. He was originally dx with PD, but two years later, the dx was changed to MSA. My mother is my father's caregiver, but it's getting difficult for her to do everything. My dad is tall and my mom is very petite. We are in the process of evaluating our options for having someone come in a few days a week to help her. Welcome to the group. --- Norris wrote: > Hi, > > My name is and my father was diagnosed with Shy > Drager in January. Unfortunately he is now in a > home since I could no longer take care of him. I > just found this site in the beginning of the week > but with the tragedy and how many people it's > affected, I decided to wait to introduce myself. My > father is 62 and has been ill for a long time before > they diagnosed him. Like everyone else they said PD > not SDA. I am trying to obtain as much information > as I can so I can speak with his nurses and doctors > They are great people. Every I have a question they > sit down with me and talk and explain everything. If > I believe serious changes happen (with him it's > about every 4 to 6 months) we go back to the > specialist and have him evaluated. > > I am only 37 and have been dealing with doctors > trying to figure out what's wrong with him for 4 > years. My mother couldn't handle it anymore and I am > now the main care person. She comes from Florida to > visit every few months but I make all the decisions. > I don't want to sound like I'm complaing but most > of the time I'm just scared. > > Hope you all can understand. Any advice to help > will be appreciated. > > > __________________________________________________ Terrorist Attacks on U.S. - How can you help? Donate cash, emergency relief information http://dailynews.yahoo.com/fc/US/Emergency_Information/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 My husband has MSA and we have a 16 year old daughter. She knows all about what's going on with her father, even though he and I have only been married for 9 months. We just felt it was better to be completely honest with her. Beth Wetzel On Sat, 15 Sep 2001 15:56:00 EDT GFKN3790@... writes: Dear I am 57 years old and also have a son 16 years old and a daughter 23 . I have not told them exactly what is wrong with me.They know I lose my balance and that I slur my words. Idont want to disrupt their lives. My sons junior year is major important. He has honor classes ,about to becone an eagle scout on the golf team and in the jazz band. My daughter works for ABC. Bottom line , Why tell them And disrupt ther lives? Have you told your son exactly what is wrong with you? Ihave MSA for 2 years and who knows how slowly it will progress. Do you agree? Mark 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 September 17, 2001 Report Share Posted September 17, 2001 Mark, Your kids need to learn about this disease not only to help you but to become better people. Be good to yourself and reach out to them with honesty. You have to have faith in them, yourslef, and what ever your spiritual beliefs are. With love, Waverley >>> GFKN3790@... 09/15/01 03:56PM >>>Dear I am 57 years old and also have a son 16 years old and a daughter 23 . I have not told them exactly what is wrong with me.They know I lose my balance and that I slur my words. Idont want to disrupt their lives. My sons junior year is major important. He has honor classes ,about to becone an eagle scout on the golf team and in the jazz band. My daughter works for ABC. Bottom line , Why tell them And disrupt ther lives? Have you told your son exactly what is wrong with you? Ihave MSA for 2 years and who knows how slowly it will progress. Do you agree? Mark 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 September 17, 2001 Report Share Posted September 17, 2001 Mark, Your kids need to learn about this disease not only to help you but to become better people. Be good to yourself and reach out to them with honesty. You have to have faith in them, yourslef, and what ever your spiritual beliefs are. With love, Waverley >>> GFKN3790@... 09/15/01 03:56PM >>>Dear I am 57 years old and also have a son 16 years old and a daughter 23 . I have not told them exactly what is wrong with me.They know I lose my balance and that I slur my words. Idont want to disrupt their lives. My sons junior year is major important. He has honor classes ,about to becone an eagle scout on the golf team and in the jazz band. My daughter works for ABC. Bottom line , Why tell them And disrupt ther lives? Have you told your son exactly what is wrong with you? Ihave MSA for 2 years and who knows how slowly it will progress. Do you agree? Mark 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 November 15, 2001 Report Share Posted November 15, 2001 Hey, when you get that losing bad habits down pat, fill us in, OK? Thanks, www.vitalady.com For info on PayPal, click this link: https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com Introduction > Hello All, > > My name is ~denise, I live in Texas -- my surgery was 8-18-00, open > RnY prox. I'm 5' 6 " , 125 / 130 lbs and holding. > > I've heard a lot about this group from the time I was pre-op and > finally got around to joining :-) > > I look forward to hearing from all of you post-outs on good health > and tips on loosing the bad habits, building new ones and maintaining > for life... and all the rest of the stuff ~smile~ > > ~denise > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Thank you so much for responding to my message. It is so nice to be able to talk to someone without explaining everything I am saying. Let me give a little introduction. Like I said, I am the mother of two boys. is 4 and Christian is 16 months. When Christian was 4 months old we took him to a geneticist at Hope Children's Hospital who first introduced us to Silver Syndrome. She wasn't diagnosing him but was putting it out there. I immediately began to do research (went on the Magic Foundations web site, etc.) and pulled off the symptoms. As I read the list, I was amazed at the similarities between my son and the symptoms. (So far, the only thing that hasn't matched up is the assymetry) The geneticist referred us to an endo who, at the first visit prescribed growth hormones. My husband and I knew at this time (the end of September) that these were inevitable so we started them in October. We saw a great increase in his appetite and even a little weight gain. We decided to get a second opinion from an endo who had done some work with Dr. H. He was shocked that our first endo put him on the ghs without doing a test. Subsequently, we took him off the gh, had the test done and it came back normal. All of this occurred at the end of January. When the dr. called to give us the test results, I asked him if he would still consider him RSS. He said he would be leery to diagnose him. We have to make another appt. to follow up with him. I just have a few questions: The endo told us it was our decision to continue him on the gh; but I have heard that at his age it might not be so good. Any advice? While he was on the gh, he developed double nail growth, which both my ped dr. and the endo assured me were not from the gh, has anyone else's child had this? I apologize for the length, but I am so excited to be able to possibly get answers. I look forward to pouring over the past messages and getting to know all you better. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi , I have asked my son's doctor about growth hormone when he was very young. She wanted to wait until he was well past 2. She said that in many cases, a child's endocrine system has " trouble getting going " and it isn't until they are 2 when you can start to get some reliable test results. Others may have differnt reason but that is what our doctor told us. It seemed to make sense at the time. As for starting growth hormone without testing, I don't think this is a good idea. Many doctors and insurance companies want to make sure there is no physical problem like a tumor which is interferring with the production and use og growth hormone. So usually, at least the insurance company wants to see an mri or c.t. scan before approving growth hormone. My son is almost 5 and he has very little asymmetry. So I would not be concerned. Many kids do not have all the characteristics. Some only have a few traits. I haven't heard of the double nail growth. That's a new one. I would suggest waiting for the follow up appointment and until your son is older than 2 before restarting growth hormone. I am not sure where is Hope Children's Hospital? I hope this helps. Ken M > Thank you so much for responding to my message. It is so nice to be > able to talk to someone without explaining everything I am saying. > Let me give a little introduction. Like I said, I am the mother of > two boys. is 4 and Christian is 16 months. > When Christian was 4 months old we took him to a geneticist at > Hope Children's Hospital who first introduced us to Silver > Syndrome. She wasn't diagnosing him but was putting it out there. I > immediately began to do research (went on the Magic Foundations web > site, etc.) and pulled off the symptoms. As I read the list, I was > amazed at the similarities between my son and the symptoms. (So far, > the only thing that hasn't matched up is the assymetry) The > geneticist referred us to an endo who, at the first visit prescribed > growth hormones. My husband and I knew at this time (the end of > September) that these were inevitable so we started them in October. > We saw a great increase in his appetite and even a little weight > gain. We decided to get a second opinion from an endo who had done > some work with Dr. H. He was shocked that our first endo put him on > the ghs without doing a test. Subsequently, we took him off the gh, > had the test done and it came back normal. All of this occurred at > the end of January. When the dr. called to give us the test results, > I asked him if he would still consider him RSS. He said he would be > leery to diagnose him. We have to make another appt. to follow up > with him. > I just have a few questions: The endo told us it was our > decision to continue him on the gh; but I have heard that at his age > it might not be so good. Any advice? > While he was on the gh, he developed double nail growth, which > both my ped dr. and the endo assured me were not from the gh, has > anyone else's child had this? > I apologize for the length, but I am so excited to be able to > possibly get answers. I look forward to pouring over the past > messages and getting to know all you better. Thanks. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi started ght at about 20 months. We have been told by the endocrinloogist (Dr Stanhope) who is an expert in rss that ght is perfectly safe and even helps against nocturnal hypoglycemia. Hope this helps Maeve mother of re: introduction > Thank you so much for responding to my message. It is so nice to be > able to talk to someone without explaining everything I am saying. > Let me give a little introduction. Like I said, I am the mother of > two boys. is 4 and Christian is 16 months. > When Christian was 4 months old we took him to a geneticist at > Hope Children's Hospital who first introduced us to Silver > Syndrome. She wasn't diagnosing him but was putting it out there. I > immediately began to do research (went on the Magic Foundations web > site, etc.) and pulled off the symptoms. As I read the list, I was > amazed at the similarities between my son and the symptoms. (So far, > the only thing that hasn't matched up is the assymetry) The > geneticist referred us to an endo who, at the first visit prescribed > growth hormones. My husband and I knew at this time (the end of > September) that these were inevitable so we started them in October. > We saw a great increase in his appetite and even a little weight > gain. We decided to get a second opinion from an endo who had done > some work with Dr. H. He was shocked that our first endo put him on > the ghs without doing a test. Subsequently, we took him off the gh, > had the test done and it came back normal. All of this occurred at > the end of January. When the dr. called to give us the test results, > I asked him if he would still consider him RSS. He said he would be > leery to diagnose him. We have to make another appt. to follow up > with him. > I just have a few questions: The endo told us it was our > decision to continue him on the gh; but I have heard that at his age > it might not be so good. Any advice? > While he was on the gh, he developed double nail growth, which > both my ped dr. and the endo assured me were not from the gh, has > anyone else's child had this? > I apologize for the length, but I am so excited to be able to > possibly get answers. I look forward to pouring over the past > messages and getting to know all you better. Thanks. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi! My name is Amy my daughter Haven will be 2 years old in April she weighs 21 pounds and is in need of oxygen for her small lung size. She has RSS, you are not alone! hang in there this is a great group for support! introductoin Hi, My name is Cami and I have 4 children. My 4th, (a.k.a The Bonsai Baby: we water him, we feed him he just doesn't grow), will be 2 in 3 weeks. He is 30 inches tall and weighs 19 lbs. We have been round and round with our pediatrician and have been seeing a GI for the past year. Our GI brought up RSS on our visit on Monday. He seems to think a visit with an endocrinologist may be in order. We have no idea where to start. Our insurance is dependant on a referral from our Pediatrician (which I am waiting on). We live in Alaska right now, and will be moving to the lower 48 this summer. My husband is in the military so we don't quite know where we are going yet. I know it probably sounds odd for me to say that this seems like a light at the end of the tunnel. We have looked for over a year now for some explanation of why is so small and why he has the digestion problems he has. Our diagnoses have ranged from Rickets to Failure to Thrive (which they told me was because I was not feeding him enough, he was eating 6 jars of food and nursing every hour from 4 months old). At one point they thought he had Celiac disease as well as CF. We really fell like we have run the gambit. I am sure there are many here that have similar stories. I would love to hear from you. Even if this does not turn out to be RSS, some one to talk to that has run the same gambit would be nice. I am sure my husband and Ken could relate, I never shut up about this. It is forever at the forefront of my mind. I don't want to get to old and us to have never come to a conclusion. Or have waited too long and there have been things we could have done. Okay, I have gone on long enough. Thanks for listening to me. Cami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 , Congratulations on your pregnancy! I am one of those on this site that found out during my pregnancy about my baby's clubfeet and I can relate if you are having some anxiety. I have a two year old daughter who was diagnosed with clubfeet at our 19 week ultrasound. At the time, we lived in Southern Minnesota. We were treated by a Ponseti trained doctor in Minnesota as well. I would love to talk to you privately about my experience if you would like. My email address is : tdfamily@... Amy > Hi, > I am new to the group so I will start with a little background info. > My name is and I am 22 weeks pg. About a week and a half ago I > had an ultrasound and the doc called and said that they thought the > baby had clubfeet. I didn't know much about clubfeet so I didn't ask > to many questions. I have a follow up ultrasound on Monday. I have > been scouring the web and have gotten lots of good information. I > have started a list of questions and have been looking at treatment > options. I live in southern Minnesota and this is my second child. > I have an almost 2 year old boy and a great husband. After I told my > mom about the baby she said that when I was little I wore a brace for > a while on my legs and she thought that clubfeet is what I had had. > She said it wasn't a big deal and not to worry about it, but from > everything I have read it sounds unlikely that my baby will get off > so easily. I would love to get some feed back about what you all > think. Ohh I have a cousin on my dad's side that was born with hip > displacement that sounds like it is related to the clubfeet > disorder. Do you have any suggestions on questions to ask my doc on > Monday? > TIA > > > > <image.tiff> > > > Quote Link to comment Share on other sites More sharing options...
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