Guest guest Posted July 10, 2000 Report Share Posted July 10, 2000 In a message dated 7/10/00 9:11:47 PM Central Daylight Time, leah_black@... writes: << http://www.geocities.com/leah_black/brachy.html Thank you, Leah >> Loved your web site. and Max are both beautiful. Big dog lover myself. We are in the DOC Band. We didn't have a choice but travel 5 hours round trip. Grateful that we have this opportunity to give our son our best shot and giving him the best. Tammy & 12/8/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2000 Report Share Posted July 10, 2000 I'll write more tomorrow. I know the GUILT. All of us do!!! But I just wonder how much guilt all the Ped out there are feeling now that this condition is becoming more known??? I do feel that each one of us here have our own story on the diagnoses at one time or another being incorrect. God speed Mom, LuAnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2000 Report Share Posted July 10, 2000 In a message dated 7/10/00 7:11:46 PM Pacific Daylight Time, leah_black@... writes: << am I the only one that does not like the looks of the helmets???? >> Leah, Believe it or not, they kind of grow on you!! My 10mos old has been in his helmet since Jan and now he looks unusual without it. You have to give either a try. Not knowing about positioning has nothing to do with being a first time Mom. We have a 5yr old and none of this would have crossed our minds if it had not been for the lump on my sons neck. He also has mild torticollis. Belinda (Indiana) P.S. Where are you from? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2000 Report Share Posted July 11, 2000 Leah: We all have feelings of guilt. Don't feel that way. My daughter is 3 and spent a lot of time on her back too, she is fine, no Plagio or Tort. Although my 5 mo. old son has it. You're a great mom. Sherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2000 Report Share Posted July 12, 2000 Leah: PLEASE try to understand...if no one told you the importance of turning your baby during sleep, there is no way you could have known!!! We moms don't know it all. We learn fast (as you are already doing) but we usually need someone to help us along the way, and this is a great place to gain support. The most important thing now is that you learn and act upon that knowledge so doesn't have to look like this for the rest of her life. I have a son who has been in the DOC band for 2 months and has seen dramatic improvement. 's plagio affected his back right side of his head and his right ear was forward about 1 1/2 inches. We expect to be in the band about another month. He was 7 1/2 months old when we began treatment. We travel from Cleveland to Chicago for treatment. Is the travel worth it? For us, yes. I was not comfortable with our local helmet program and I loved the people at the Chicago clinic and believed their product would work for . I do not regret our decision one bit. Travel is not for everyone, we have made some sacrifices for this. Many people in this group are very happy with helmets they got locally. It depends on where you are and what your choices are. The helmets and bands really do look funny when you first look at them. But, the beauty of the child really does shine through, and most parents say their son/daughter actually looks cute with it on. I think does. Above all, you do it for the benefit of the child. We as parents have to suck it up and take the brunt of the critics. I wish you the best of luck in finding the best solution. It will not be easy. Please keep in touch with this group with any questions or comments. People here care. Sue ----- Original Message ----- From: <leah_black@...> <Plagiocephalyegroups> Sent: Monday, July 10, 2000 10:10 PM Subject: hello > I am a new member and am just reading all the messages. I hate > to be the sourpuss, but I am not near as positive as you all are! My > daughter is almost 6 months and was diagnosed with brachycephalic. > We > are going to the neurosurgeon on Thursday to see what he thinks. My > overwhelming feeling right now is GUILT! As a first time mom, I did > not know how important it was to rotate sleeping positions!!!! My > doctor did notice the back of her head becoming flat at her 2 and > 4-month check-up, but she did NOT make a big deal about it!!! She > actually told me at her 4-month check-up that even if I tried > switching her sleeping position, would probably just end up on > her back....so I felt there wasn't much bother in doing it. Well, > after a trip home to my parents my mother INSISTED I see another > doctor. She (my mother) is a Labor & Delivery nurse for 30+ years > and > had not seen a babies head shaped as 's was. So, I took her in > and now am having these terrible guilty feelings that this could have > been prevented!!!! Also, am I the only one that does not like the > looks of the helmets???? In this age of technology, can't there be > anything that looks better to the eye? I don't want to sound so > pessimistic, as I know there are sooooo many other things that my > angel could have, but I feel this is MY fault!!!! Also, if anyone > can > tell me what is soooo bad about the helmets and soooo good about the > bands, I would appreciate it. Is it worth traveling 5+ hours for the > bands each way? If these bands are soooo good, why aren't they > available in every city? Sorry to ramble. > > If you have the time to look, I have put 's pictures of her > flat > head on my website and would appreciate anyone looking at them to > compare if their child had improvement with a similar looking head. > http://www.geocities.com/leah_black/brachy.html > > Thank you, > Leah > > > ------------------------------------------------------------------------ > Wish you had something rad to add to your email? > We do at www.supersig.com. > 1/6807/5/_/689409/_/963281437/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2000 Report Share Posted August 17, 2000 In a message dated 8/17/00 5:32:09 PM !!!First Boot!!!, BBWswan@... writes: << Hi, I just joined this group and thought I would send a little email about myself... I am 26 years old and have had CMT my entire life >> Hi Margaret, Welcome to the group. I am the mother of who is 14 with CMT. You will probably love this group like the rest of us. I got a message of Website under construction when I tried to look at your site. Hey gang, I figured out how to reply to just a line or two like Gretchen asked. Someone here told me how. Thanks! ( I am computer illiterate) a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2000 Report Share Posted August 17, 2000 In a message dated 8/17/2000 10:32:13 AM Pacific Daylight Time, BBWswan@... writes: << Hi, I just joined this group and thought I would send a little email about myself... I am 26 years old and have had CMT my entire life. I have worn corrective shoes since age 12 and have worn foot and ankle orthodics for the past 4 years. I am the type of person who loves to be on the go all the time, but unfortunately CMT is starting to limit most of my activities, so now I am in search of a rascal or other type of mobility scooter to use while I am out. If you would like to know anything more about me, please visit my homepage at http://www.geocities.com/mediller >> HI Margaret, Nice to meet you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2000 Report Share Posted August 18, 2000 You're web page is cool welcome I have learned so much in this group my neuro says I probable know more than him thats kinda scary ha! ;) jacee17@... wrote: > In a message dated 8/17/2000 10:32:13 AM Pacific Daylight Time, > BBWswan@... writes: > > << > http://www.geocities.com/mediller > >> > HI Margaret, Nice to meet you. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2000 Report Share Posted September 1, 2000 In a message dated 9/1/2000 4:41:15 PM Pacific Daylight Time, lcowan4420@... writes: << Due to my symptoms the dr. ordered a MRI to check for MS. So now I have to wait to see what it shows. Does anyone know if you can have MS along with CMT? Sorry this is so long, but I have never been able to share this with anyone not even my husband. Thanks for listening. P.S. My mother's letter also revealed I have cousins that have been diagnosed CMT. >> HI LORI, What an amazing story yours is. Do you children have CMT? Why didn't your Mom tell you anything? You can have MS and CMT. Just like you can have a cold and CMT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2000 Report Share Posted September 1, 2000 In a message dated 9/1/00 4:40:54 PM, lcowan4420@... writes: << Does anyone know if you can have MS along with CMT? >> Hi Lori, Yes, I know CMTers who also have MS. Some also have Parkinson's and other disorders. Doesn't seem fair, does it!!!! Anyway, glad you found us, and I hope we can be of help. CMT does progress - different rates for different people. How are your children? They didn't inherit? Kat Seattle WA Married 2 adult sons Type 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2000 Report Share Posted September 2, 2000 --- Hello Lori. I can kind of relate to what is happening in your family. When my mom was diagnosed 20 years ago, she sat down and told the family about it, including her two brothers. One of her brothers refused to acknowledge the diagnosis and for some reason chose to keep it a secret. He refused to tell his children (my cousins) about the family history. Now, 20 years later, me and my sister have been diagnosed. My cousins have started asking alot of questions, and are starting to put the pieces together. Needless to say, it is causing quite the family problems because they are now finding everything out and are very angry and upset at their father for hiding this from them. I will never understand how he thought it was better not to tell anyone, it only causes prolems down the road. Now, he has to deal with the consequences of what he did. If there's anyone out their who has even thought about keeping this from other family members for whatever reasons, DON'T! It's better to face it and acknowledge it. Catht In egroups, lcowan4420@a... wrote: > My Name is Lori I am 45 and I was diagnosed with Dejerine Sottos (a > form of CMT) in 1966. I had several surgeries on my feet over a > period of a few years. I also had physical therapy for awhile. > Since the surgery did nothing but butcher my feet I tried to live my > life as if I was like everyone else. But I wasn't. I walked funny, > no balance, no muscle strength. As years went by I just tried to > ignore it all. I married, had three children worked full time. I > know people always wondered what was wrong with me, but I never gave > any info out freely. sometimes I even lied about it and told people > I was in a auto accident it was easier. Over the last 5-6 years I > have been having a lot more problems, leg cramping, hammer toes, > balance worse, sharp pains in my toes and my knees and hips giving me > problems. I never went to a doctor about any of these symptons until > this month. My feet and hands have gone numb, hips very tight, neck > and back stiffness. I didnt tell the Dr. what I was diaganosed when > I was a child because I didnt know it even had a name until today. > You see I just received a letter from my mother giving me some > information I never knew. I figured the surgeries were because my > feet turned in and they were trying to fix it. I did not know it was > a nerve problem till now. Due to my symptoms the dr. ordered a MRI to > check for MS. So now I have to wait to see what it shows. Does > anyone know if you can have MS along with CMT? Sorry this is so > long, but I have never been able to share this with anyone not even > my husband. > Thanks for listening. > P.S. My mother's letter also revealed I have cousins that have been > diagnosed CMT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 It was a little hard to find, though I bought my Dolomite at a local health food store. Quite a bit cheaper than the suggested place in Sally Fallon's book too. Plus no shipping. <<I'm getting ready to try making my own cream cheese from clabbered milk. Since I buy it raw I'm guessing I don't need the culture since the recipe says raw milk clabbers on it's own. Still--I don't know if I'll be brave enough to try it or not! But I'm getting there.>> Okay, so who gets the honors? The kids under threat of death, or the dog that will eat anything anyway??? <giggle> I love Finnish yogurt. But then it does have some sweetening added to it. I did not like local yogurt for our district in Norway. So on weekends a ferry trip would ensue off island to another dairy to buy yogurt I would actually eat. LOL I lived in Afrika after Norway. I probably would not have been so fussy over the Norwegian yogurt had it been the reverse. But oooh yuck the yogurt & other soured milk products in East Afrika. Just like being in the Eastern Bloc. I know, I know, it is so much healthier... <<I'm hoping this list gets a little more active--I need encouragement! I'm currently making my first batch of sourdough starter from homeground rye flour. It's bubbling away in the kitchen. You should see the looks I'm getting from one friend of mine. She says she isn't quite sure what's ok to eat in my house since I'm always fermenting something!>> I spent a lot of time growing up in the Alaskan Bush as a child. Sourdough starter was a fact of life. Basically I did not even know that every house in America did not have their starter crock tucked away somewhere. And then we grow older & learn how the other half lives. <sigh> <<My sister is (or was?) on a list for healthy animal nutrition. She converted her dogs to an all raw diet mimicking nature. She said she's next! I guess it's easier to do healthy things for other first?>> Well, okay honestly, the dog & cat still eat better than I do. Though the horse holds the trophy in this household for fanatical feeding. I shan't even mention what I eat. They would definitely throw me off the List. <ugh> I live very close to Omega Nutrition & Barlean's Oils both. (They can be found on the web.) Perhaps not a " native " enough topic for this List. though I do use their products to help to prop up my body from my crummy diet. Slowly Doing More From Sally's Book, Vache Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Hi and welcome! I'm a newbie too. Unfortunately I can't really answer your questions due to the fact that I'm new AND I have no animals whatsoever, being a suburbanite. (Hoping to move to a " farm " in the next 2 years--we're working toward that) > I bought food grade dolomite to soak the corn, though just never got > around to trying it. I just do not seem to feed any corn. Did you order the dolomite from the source in Ms. Fallon's book or find it elsewhere? > I make my own kefir from a powdered mix I buy at the health food > store. I have always wondered if I have been making it 100% > correctly. I have been too chicken to taste it myself. None of my > animals have died from it yet. <grin> I'm getting ready to try making my own cream cheese from clabbered milk. Since I buy it raw I'm guessing I don't need the culture since the recipe says raw milk clabbers on it's own. Still--I don't know if I'll be brave enough to try it or not! But I'm getting there. > I absolutley would > gag over " real " cottage cheese & yogurt in the Second & Third World > countries. (Yep, give me a fried grub any day. LOL) And I am just > too darn chicken to try new things. (Bad me, bad, bad me.) Actually, I felt the same way--but the yogurt in Greece is REALLY good--I preferred the goat--with honey added. I would draw the line at grubs however!! : ) I'm hoping this list gets a little more active--I need encouragement! I'm currently making my first batch of sourdough starter from homeground rye flour. It's bubbling away in the kitchen. You should see the looks I'm getting from one friend of mine. She says she isn't quite sure what's ok to eat in my house since I'm always fermenting something! My sister is (or was?) on a list for healthy animal nutrition. She converted her dogs to an all raw diet mimicking nature. She said she's next! I guess it's easier to do healthy things for other first? I know my kids get the benefit of my knowledge and I sneak Diet Cokes when they're not around. (But Honest, I'm TRYING to quit--I swear they're addictive!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 > It was a little hard to find, though I bought my Dolomite at a local health > food store. Quite a bit cheaper than the suggested place in Sally Fallon's > book too. Plus no shipping. Whole Foods type chain? Or local independent? > Okay, so who gets the honors? The kids under threat of death, or the dog > that will eat anything anyway??? <giggle> I have kids that will try anything once. I have one daughter who loves plain yogurt, and homemade yogurt " cream cheese " --she's the likely candidate. (Of course, she's also the one who orders the fruit plate in resturants and asks for just veggies for dinner--sometimes I think she does this to make me look bad) Ok, so now I have to ask--where are you now? It sounds you have either lived LOTS of interesting places-- > I spent a lot of time growing up in the Alaskan Bush as a child. Sourdough > starter was a fact of life. Basically I did not even know that every house > in America did not have their starter crock tucked away somewhere. And then > we grow older & learn how the other half lives. <sigh> I grew up in the Ozark Mountains of Arkansas. I distinctly remember my dad's mom serving us roast possum one meal and my mom's mom would serve duck, squirrel, etc. My parents grew up on the diet in Sally Fallon's book--organ meats, raw milk from their own cow, lard, game, home made EVERYTHING--I think this is why they have such excellent health. No one would throw you off--all changes take time. I'm trying to implement it very slowly. Kids and others get culture shock if you try to much. My husband lived in Austria till he was around 10 before his family returned to the states--he is definitely into much of Sally's book--but as long as I do it--he doesn't have the time..... > I live very close to Omega Nutrition & Barlean's Oils both. (They can be > found on the web.) Perhaps not a " native " enough topic for this List. > though I do use their products to help to prop up my body from my crummy diet. I don't know what Omega Nutrition is, but I do use Flax oil in my diet--my 3 year old even asks every morning for the flax on her oatmeal! > Slowly Doing More From Sally's Book I think that's the whole idea. Have you tried the mayo or mustard recipes yet? I'm wanting to and just wondered if anyone has??? The homemade turkey sausage was a HUGE hit with the kids--I did have to cut the cayenne in half though. And what is the general opinion of freezing food? Does it destroy the enzymes??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 > It was a little hard to find, though I bought my Dolomite at a local health > food store. Quite a bit cheaper than the suggested place in Sally Fallon's > book too. Plus no shipping. Whole Foods type chain? Or local independent? > Okay, so who gets the honors? The kids under threat of death, or the dog > that will eat anything anyway??? <giggle> I have kids that will try anything once. I have one daughter who loves plain yogurt, and homemade yogurt " cream cheese " --she's the likely candidate. (Of course, she's also the one who orders the fruit plate in restaurants and asks for just veggies for dinner--sometimes I think she does this to make me look bad) Ok, so now I have to ask--where are you now? It sounds you have either lived LOTS of interesting places-- > I spent a lot of time growing up in the Alaskan Bush as a child. Sourdough > starter was a fact of life. Basically I did not even know that every house > in America did not have their starter crock tucked away somewhere. And then > we grow older & learn how the other half lives. <sigh> I grew up in the Ozark Mountains of Arkansas. I distinctly remember my dad's mom serving us roast possum one meal and my mom's mom would serve duck, squirrel, etc. My parents grew up on the diet in Sally Fallon's book--organ meats, raw milk from their own cow, lard, game, home made EVERYTHING--I think this is why they have such excellent health. No one would throw you off--all changes take time. I'm trying to implement it very slowly. Kids and others get culture shock if you try to much. My husband lived in Austria till he was around 10 before his family returned to the states--he is definitely into much of Sally's book--but as long as I do it--he doesn't have the time..... > I live very close to Omega Nutrition & Barlean's Oils both. (They can be > found on the web.) Perhaps not a " native " enough topic for this List. > though I do use their products to help to prop up my body from my crummy diet. I don't know what Omega Nutrition is, but I do use Flax oil in my diet--my 3 year old even asks every morning for the flax on her oatmeal! > Slowly Doing More From Sally's Book I think that's the whole idea. Have you tried the mayo or mustard recipes yet? I'm wanting to and just wondered if anyone has??? The homemade turkey sausage was a HUGE hit with the kids--I did have to cut the cayenne in half though. And what is the general opinion of freezing food? Does it destroy the enzymes??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 et al-- (I'm leaving a lot of 's original message to me as I don't think it went to the whole list and I think it may be of interest to some of you--hope that's ok -- My sourdough is rising on the kitchen counter as I type. I'm going to bake it in the morning. I halved Sally's recipe for 2 reasons: One, I didn't want 5-6 loaves of bad bread if something went wrong and Two, after following her starter recipe I only had 2 quarts of sourdough starter, not 3. So I saved one and used the other to make half the bread recipe. I'll let you know if I'm successful! Thanks for the mayo tip. Did the mayo made with olive oil taste olivey? What is the difference between the sunflower oil and the grapeseed oil as far as taste goes? > I have made both the mayonnaise and mustard recipes in Sally's book. > I didn't like the mayonnaise. Here's how I altered the recipe: 2 whole eggs 1/2 tsp dry mustard 1 T whey 1 T lemon juice drop of raw, unfiltered apple cider vinegar 1 c grapeseed oil sprinkle of onion powder sometimes I add garlic powder as well > I didn't see anything in Sally's book about grapeseed oil and would > be real curious in knowing her thoughts about it. I just didn't like > the mayonnaise made with olive or sunflower oils. Does anyone on the list have any insights into the grapeseed oil question??? > The mustard is FABULOUS!!! Be forewarned, it's hot! All it takes is > a little bit. At first my kids didn't like it as it required a full > glass of water to go along with each bite. After awhile they grew > accustomed to the heat and now it's all they eat. Ok--I'm not the mustard eater in the family. In fact, I don't even like the stuff. But my husband loves it. What's the difference between hot and sweet? He likes both. Can you alter the recipe to make the other kind? > One of our favorite recipes in Sally's book is pancakes on page 478. > I soak the flour in kefir. Soaking the grains makes a huge > difference. They aren't so heavy and I don't find myself yawning a > couple hours later. I invested in some All-Clad cookware and cook > the pancakes in clarified butter (page 150)in a stainless All-Clad > pan with the lid on. The lid is the important part! Without the lid > the pancakes take FOREVER to cook. With the lid they cook just as > quickly as those made with unsoaked flour. Sometimes I use all spelt > flour, sometimes a combination of spelt and buckwheat however my > favorite is spelt with teff flour (I think teff is an Ethiopian > grain). They are wonderful! We top them with cultured butter and > whipped cream made from creme fraiche. Take some creme fraiche, add > some vanilla and either maple syrup, sucanat or stevia for > sweetening. Whip it up with an egg beater and you've got whipped > cream. > Another favorite of ours is the brown rice with coconut milk. I > leave out the cardamon pods. Again I use an stainless All-clad > casserole dish to cook it in. I bring the broth to a boil on the > stovetop, add the rice, butter, salt, cook it about 10 minutes then > put it in a pre-heated 350 degree oven. Then I turn the oven off and > dash kids off to soccer, dance classes or whatever. When we return a > couple hours later the rice is done and ready to eat. > > I've had a great time with Sally's book and have tried numerous > recipes. There have been a few flops, well maybe more than a few. > Would love some input on fermented vegies. I've tried many of > Sally's recipes but they end up fizzy. Are anyone elses turning out > like that? You bite into a beet, green bean or pickle and it > bubbles. Hmmm...Look forward to your suggestions. Ok--what recipes do you consider flops? Would love to know--and also the reasons why they have flop status--might save me a disaster! Nothing worse than sitting down to dinner with the family and realizing it's going to be scrambled eggs 'cause noone will eat what I've cooked! (A spectacular rice and lentil cassarole comes to mind--I loved it, but I was the only one--it is still brought up to this day as in " will this be like that lentil-rice baked thing you made??? " ) Oh well. Kids have looonnngg memories. Haven't tried any of the fermented veggies. Wanted input from others first. Did try the gingerale--I liked it but it was a bit slippery if that description makes any sense--better after 2 months in the fridge. Should it be slippery or did I do something wrong?? Does anyone save their whey for soaking foods? What should it look/smell like? I know Sally says it keeps in the fridge for about 6 months--but how will I know if it's gone rotten on me??? Hoping for answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Regina, Boy, can I relate to the HMO referral problems. Here's a couple thoughts. If your primary care is so resistant to contemplating the possibility of CMT despite the family history, maybe you need a new primary care physician? I know people are often reluctant to switch doctors but it doesn't sound like he (or she) is the right one for you. With my HMO it is very easy to switch primary care physicians, actually too easy. I could have a new one every month if I wanted to. In regards to the neurologist, I rejected the first one I saw with my kids after realizing I needed to have them evaluated for CMT. He was NOT the doctor for us, and that was obvious in the first visit. Another option is to see if there is an MDA clinic withing a reasonable distance from your home. You can check for clinic locations at www.mdausa.org I'm pretty sure you can schedule an appointment there without a referral to get a diagnosis, expecially if CMT is already diagnosed in your family. MDA will still request your insurance information, but should pick up any cost not covered by the HMO, at least for evaulation and diagnosis. MY MDA clinic likes to see the entire family, even siblings who are not diagnosed so they can evaluate the course of the disease within the family unit. (This may not happen at all MDA clinics...) Good luck and keep us posted and always feel free to ask questions and tell us your experience. Ruth >From: battisti@... >I myself have not been diagnosed with CMT, but my maternal >grandfather, and oldest brother have been, which of course means my >mother has it, but she has not been formaly diagnosed with it. >I started having problems with my hands about two yrs ago. A trip to >my (hmo)doctor got me a referral to a neurologist who diagnosed me as >having carpal tunnel. This neurologist didn't even seem intrested in >the fact that there was a strong family history of CMT. I wonder now >after reading posts on other boards if this " carpal tunnel " is just >that. I have recenlty started having pain in my feet. It has >progressivly gotten worse over the last two months. I have pain in my >wrists and the " fleshy " part of my thumbs. Though I haven't noticed >any muscle loss in that area. Everytime I bring up the subject of the >CMT to my doctor he kinda shrugs me off. On the flip side my >childrens pediatrition has offered to have them tested (especially >my son and one daughter that show some slight physical signs) of CMT. >AS of yet I have not taken up the offer. My brother was diagnosed >around 13 yrs ago and said that the " testing " was uncomfortable. I >know they have new ways of testing now that are not so invasive. >From reading and from what my brother has told me (he never had any >more testing done after being diagnosed with CMT) it seems that our >family has the resessive X gene CMT. Though I would like to find out >for sure. >How does one go about getting a reluctant doctor to give a referral >to a neurologist for diagnosis of CMT before showing major symtoms? >And since I am on an HMO plan I have to have my primary care doctor >give me a referral. *sigh* >Should I have my children tested first? I personally would like to be >tested first and if I am diagnosed as having CMT then have them >tested. But if I have a child test positive would it be easier to get >my reluctant doctor give me a referral? >Any advice would be appreciated. > >Regina > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Hello from me, too. I just joined today, as well. Two years ago, through an ultrasound for something else, it was discovered I had gallstones. I did do a cleanse at that time, mainly the apple juice for a couple days, then the oil and lemon juice. I passed about 2 dozen pea sized, greenish/yellowish gallstones. It was a bit of a rough process -- I didn't need the laxative " help " ; and it proved to be too much. But it was relieving to see the gallstones. My gallstones were " silent " ... and I proceeded to forget about them. Just a few days ago, I had my first gallbladder attack. I have an appointment with the doctor this Tuesday. Tonight I've been researching information about cleanses. I think I've found a couple that are close to what I did before. What is new is the parasite cleanse that is being recommended. I would love to hear how others did this cleanse. It seems overwhelming to me tonight, is there a simplified version? What does it mean to " zap daily " ? And it's sounding like special sources are necessary for the Black Walnut Hull and the Wormwood. Also, has anyone compared the Dr. routine to the " cleansing or surgery " type routine? And lastly, has anyone taken any drugs to dissolve stones... how does this compare to the cleanses? Lynne > Hi > I just joined the list today and wanted to say hello and introduce > myself. My name is . I recently had a couple of what turned > out to be gall bladder attacks. Three, actually, within about 10 > days. I'm sure I don't even have to tell you how quickly the doctor > started talking about having the gall bladder removed! I just knew > there had to be a better alternative than elective surgery. > > So I've made some dietary changes, and I'm drinking peppermint tea > and chamomile tea and taking an herbal tincture called Fennel Wild > Yam Supreme. I did a liver cleanse a couple of years ago so I > started doing searches for gallbladder cleanses. I went right out > and bought a lot of Granny apples! I juiced some and have > been eating and drinking them for the last two days and will do so > for three more days in preparation for a flush. > > I just do NOT want to have surgery when it isn't necessary. I was so > very glad to come across this group so that I could have people to > talk about this with. There are some people in my life who respect > the fact that I'm taking some " natural " approaches, but doing a > gallbladder flush would be a little over the edge for most people to > understand! > > So, thank you all for being here and I look forward to reading what > you're all up to. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Hi Angelika, What a surprise that you are coming to Las Vegas for your surgery....what made you decide on the doctor here? And who is it? I have only recommended one doctor here in LasVegas--one of the girls on our group went to him and she seemed satisfied with her explant procedure. But I have not heard alot about him, and I feel much better recommending Dr. Feng over anyone else. How long will you be staying here in Vegas? I can be here to help out if you need support and encouragement throughout your ordeal. Matter of fact, there are quite a few Vegas ladies on this group, (or were--I know some have left). So, if you want some company, I am sure you will get it. Glad to hear that you've moved forward on this. It is the best thing you can do for yourself and for those that love you! Patty ----- Original Message ----- From: priscillasuki@... Sent: Tuesday, November 27, 2001 4:23 PM Subject: Hello I just wanted to tell everyone that I made the big step and scheduled surgery for Jan 18 and bought my plane ticket. Thank you for all of your support and helpful emails. I got so frustrated trying everything from contacting the doctors, the insurance company and McGhan along with a few other places that I just gave up trying with getting insurance or McGhan to compensate me for the surgery. I just put it on my credit card with the support of my husband. My sister and I are going to Las Vegas to her surgeon on the 17th of Jan and I will be having the operation on the 18th. I am very nervous since I keep hearing a lot about drains. I don't know anything about what takes place except that you need to have the procedure done "en bloc". Special thanks for all the emails of support which helped me give myself a kick to get this done ASAP. As for the future, I am going to make every woman I come in contact know what implants are all about. I will make sure that by the time I am done talking to them, they will be sick about the idea. If they still want to do it, then at least I will feel at peace with myself because I let them know what I didn't and nobody bothered to inform me when I had mine put in. Thank you again everyone! Lots of love, Angelika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 I sent you an email but wanted to reiterate what I said about making sure that this Dr is well informed about explants, how many has he done, does he realize that textured implants can be difficult to remove, is he going to take video tape, or pictures of the procedure, and esp of the capsules on the implants when they come out, will he use drains, will he make sure to get all the capsule out? This is important info, you can't just run out to any Dr and have breast implants removed. My friend in NYC did and she ended up having to have a second surgery because the first surgeon blatantly lied to her and told her that she had removed all the capsules, when she wasn't getting better we talked and I suspected that it was not done right, her PS told her she had removed all the capsule via the underarm, there is just no way, so she went to Dr Feng and had a second surgery and they found the entire capsule brown and rotting in her body. The important thing to know is that esp textured implants shed particles of silicone into the capsule, in fact if the capsule is left in it is almost worse than having the implants, because all the toxic crap is in the capsules, kind of like a filter, anyhow, I am concerned that you won't get the proper treatment if this Dr is not experienced with explants, and just because a surgeon has lots of experience putting them in doesn't mean that he can take them out. Please ask all the questions prior to surgery, you don't want to stay sick and then wonder if it is because the job wasn't done right. and you don't want to have to endure more than one surgery, you want this to be the last. I am proud of you though for making the decision and hopefully whoever it is that your going to will take good care of you, please be careful. With much love, In @y..., priscillasuki@a... wrote: > I just wanted to tell everyone that I made the big step and scheduled surgery > for Jan 18 and bought my plane ticket. Thank you for all of your support and > helpful emails. I got so frustrated trying everything from contacting the > doctors, the insurance company and McGhan along with a few other places that > I just gave up trying with getting insurance or McGhan to compensate me for > the surgery. I just put it on my credit card with the support of my husband. > My sister and I are going to Las Vegas to her surgeon on the 17th of Jan and > I will be having the operation on the 18th. I am very nervous since I keep > hearing a lot about drains. I don't know anything about what takes place > except that you need to have the procedure done " en bloc " . Special thanks > for all the emails of support which helped me give myself a kick to get this > done ASAP. As for the future, I am going to make every woman I come in > contact know what implants are all about. I will make sure that by the time > I am done talking to them, they will be sick about the idea. If they still > want to do it, then at least I will feel at peace with myself because I let > them know what I didn't and nobody bothered to inform me when I had mine put > in. Thank you again everyone! > Lots of love, Angelika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi Sherrie,. is it red?..itchy? It very well could be a yeast infection...that has happened to me in the past. sherri Stay strong and healthy >From: " scorn720 " <scorn720@...> >Reply-Rheumatoid Arthritis >Rheumatoid Arthritis >Subject: hello >Date: Tue, 13 Jul 2004 13:56:43 -0000 > >i have a problem i have found a radh under my breast and was wornding >if some has any ideaas to what it might be before i go to the >doctorany help wiuld be nice thanks sherrie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 > Hi Sherrie,. is it red?..itchy? It very well could be a yeast > infection...that has happened to me in the past. sherri > > > > Stay strong and healthy > > > > > > >From: " scorn720 " <scorn720@y...> > >Reply-Rheumatoid Arthritis > >Rheumatoid Arthritis > >Subject: hello > >Date: Tue, 13 Jul 2004 13:56:43 -0000 > > > >i have a problem i have found a radh under my breast and was wornding > >if some has any ideaas to what it might be before i go to the > >doctorany help wiuld be nice thanks sherrie > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi Wally, I am 45 and have had RA for 18 years or so. Do you see a rheumatologist? it's important that you do as they know much more about the condition ( I hate using the words disease or illness) and the relevant medications. Rheumatoid Arthritis is an auto immune condition and needs to be controlled. I take Methotrexate, its an immunosupressant and Refocexib, an anti inflammatory. I was lucky, they diagnose me in the very early stages of RA and got me on the meds straight away, so I do not have a vast amount of joint damage. The best thing I can say to you is ask your doc to refer you to a rheumatologist, not all the meds are bad, some have side effects that go after a while. The Methotrexate makes my tongue a little sore, but that for me is a small price to pay in controlling the flares...lol This group is great and the members are wonderful, friendly and supportive so never be afraid to ask an thing or just have a good old moan to make you feel better on a bad day. Remember we are all in the same boat so do understand. I live in the UK but sometimes wish I lived in a hot country when the aches are bad. Nice to meet you and take care, Lynne "What lies behind us and what lies before us are tiny matters, Compared to what lies within us." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 --- In Rheumatoid Arthritis , " Lynne " <lynne@v...> wrote: it's important that you do as they know much more about the condition ( I hate using the words disease or illness) Me, too! I like and use the word " condition " . I still feel like a whole (and rather healthy) person--not ill or diseased. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Wally, I take a lot of vitamin C and omega-3 fish oil. I still take anti-inflammatory but also use a potent berry juice full of antioxidants. I am careful with diet - no milk, no sugar, no wheat, no caffeine, no soft drinks. Good luck finding some help, Kay ----- Original Message ----- From: Waldyne Bieberdorf Rheu Arthritis Sent: Tuesday, September 07, 2004 7:14 PM Subject: Hello Good afternoon, I am the new kid on the block here today. I don't feel new as I am 63 and a grandma of 2. I live downstairs in my daughter and family's house, I have my own apartment, so I get to see the grandkids everyday. This has been a blessing to me. I have had arthritis (never was told what kind), since I was early 30's and was on Motrin till 1999 when I broke out into hives and was changed to Naperson. I only stayed on these for about a month as my stomach was just so irritated, and long before thought I was in trouble stomach wise. To my docs disgust, I refused anything in meds. Once the initial shock was over I thought things were going well, and they were up till this last winter. My knee is very sore and swollen at times now,and I sometimes can't get out of bed, my whole body and ribs are so tight that I can't move. But then it can leave as quickly as it began, and I have no pain at all! My ankle has started to be painful along with swelling when I walk ( I do a lot of walking). I joined this list for new information on meds and other things like vitamins that I can be on. I'm looking to getting to know you and reading what you are going through if you are like me, the Lord lays me on my back in order to look upand depend on Him. For now, Wally Quote Link to comment Share on other sites More sharing options...
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