Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 Welcome . This is a great list. Everyone here is every friendly and knowledgeable. Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 Hi welcome to the group, I to am fairly new to this group, I've found them to be the most helpful and compassionate group around Verna > Hi Group > > My name is ....I'm a 55 yo male living alone with RA and also a form of MD...Charcot-Marie-Tooth Disease....I look very much forward to reading and learning lots about RA on this list..... > > Thank You > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Welcome to our group . You'll definitely learn a lot about RA on this list. It is full of knowledgeable people. I had not heard of the type of MS that you have, so I had to look it up. http://www.charcot-marie-tooth.org/ explained it to me. It must be very difficult to have both RA and MS. We have a web site that Judy has made for us with many very good sites about RA and related diseases. The link is at the bottom of every email for easy reference. http://www.rasupport.webprovider.com/ It has a lot of information about the meds and tests for RA. If you have any questions, feel free to ask. I enjoy internet research and will try to find answers to anyone's questions. I am 45 and was diagnosed with RA when I was in my early 20's. I'm on Enbrel & Voltaren, which is helping me a lot. a ----- Original Message ----- From: <dmillerman@...> < egroups> Sent: Tuesday, May 30, 2000 9:23 AM Subject: [ ] New Here > Hi Group > > My name is ....I'm a 55 yo male living alone with RA and also a form of MD...Charcot-Marie-Tooth Disease....I look very much forward to reading and learning lots about RA on this list..... > > Thank You > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Welcome, ! This is a wonderful group. I hope you enjoy it as much as I do. If you want to learn about RA, this is the place. We are also very supportive of each other and have a lot of fun. How long have you known you that you have Charcot-Marie-Tooth? RA? I'm looking forward to getting to know you better. (who is 41, living with her three children, and is in No Definite Diagnosis Hell) ----- Original Message ----- From: " a " <aA@...> < egroups> Sent: Tuesday, May 30, 2000 7:05 PM Subject: Re: [ ] New Here > Welcome to our group . You'll definitely learn a lot about RA on this > list. It is full of knowledgeable people. I had not heard of the type of > MS that you have, so I had to look it up. > http://www.charcot-marie-tooth.org/ > explained it to me. It must be very difficult to have both RA and MS. > We have a web site that Judy has made for us with many very good sites about > RA and related diseases. The link is at the bottom of every email for easy > reference. http://www.rasupport.webprovider.com/ > It has a lot of information about the meds and tests for RA. If you have > any questions, feel free to ask. I enjoy internet research and will try to > find answers to anyone's questions. > > I am 45 and was diagnosed with RA when I was in my early 20's. I'm on > Enbrel & Voltaren, which is helping me a lot. > > a > > ----- Original Message ----- > From: <dmillerman@...> > < egroups> > Sent: Tuesday, May 30, 2000 9:23 AM > Subject: [ ] New Here > > > > Hi Group > > > > My name is ....I'm a 55 yo male living alone with RA and also a form > of MD...Charcot-Marie-Tooth Disease....I look very much forward to reading > and learning lots about RA on this list..... > > > > Thank You > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Welcome Suzanne!! We're glad you've jumped on board. Where are you located? I'm from Iowa. Married and have four children. I was diagnosed in 1996 with CMT Type 1. I have some of the same numbness problems that you talk about. Mine effects me more if I'm sitting to long or my arms are resting in a certain position to long. This group is wonderful for info, encouragement and humor! Best of Luck Jane ----- Original Message ----- From: suzmmmyers@... Sent: Tuesday, January 16, 2001 2:36 PM egroups Subject: [] new here Hello everyone. I stumbled across this group and can not tell you how excited I was...people with CMT so seldom run into anyone with CMT. I just got this computer for Christmas and am just learning all the ins/outs of surfing and everything and getting the glitches out of this computer. My name is Suzanne Myers and I was diagnosed in 1997 with probable CMT, after over 20 years of being misdiagnosed...my information has come from CMT international out of Canada and I do not know what I would have done without it...as the doctors here say CMT can never cause problems, no matter how severe the nerve damage and I was not walking at the time. My feet and legs were numb with hands going numb from " trying " to use crutches to walk..After 4 years I still do not have a doctor..and am having much trouble finding one who will listen to me, or read any CMT information. Well I just wanted to say hello and that I am very glad to have found this site with other people with CMT. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 -----Original Message----- From: suzmmmyers@... <suzmmmyers@...> egroups <egroups> Date: Tuesday, January 16, 2001 2:34 PM Subject: [] new here Hi Suzanne, welcome! The Dr's you've seen actually say CMT can never cause problems? Boy do they need a refresher med course! And some common sense to go along with it! What do they think CMT is? Its a Peripheral Neuropathy, we just aquired in our genes! Find another neurologist if you can, have you tried the MDA? Muscular Dystrophy Assoc. Ask your Dr's if CMT can NEVER cause any problems, why then does the MDA cover it in their research and treatment programs? Do they think that Muscular Dystrophy never causes problems? Geesh! You poor thing, how frustrating you must feel. Are you married? How old are you? Any children, if so do any of them have CMT symptoms? How about other family members, do they have CMT or show any signs of having it? ~>Becky M. >Hello everyone. I stumbled across this group and can not tell you how >excited I was...people with CMT so seldom run into anyone with CMT. >I just got this computer for Christmas and am just learning all the >ins/outs of surfing and everything and getting the glitches out of >this computer. My name is Suzanne Myers and I was diagnosed in 1997 >with probable CMT, after over 20 years of being misdiagnosed...my >information has come from CMT international out of Canada and I do >not know what I would have done without it...as the doctors here say >CMT can never cause problems, no matter how severe the nerve damage >and I was not walking at the time. My feet and legs were numb with >hands going numb from " trying " to use crutches to walk..After 4 years >I still do not have a doctor..and am having much trouble finding one >who will listen to me, or read any CMT information. Well I just >wanted to say hello and that I am very glad to have found this site >with other people with CMT. Suzanne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 HI IM NEW TO THE COMPUTER TO . I HAVE C.M.T. SO DOES MY DAUGHTER IM HAVING A HARD TIME FINDING A DOCTOR TO I WOULD LIKE TO CHAT WITH YOU SOMETIME EMAIL ME Ponnee@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 -----Original Message----- From: ponnee@... <ponnee@...> egroups <egroups> Date: Thursday, January 18, 2001 7:29 PM Subject: Re: [] new here Hi and welcome! Tell us about yourself, about your CMT, what symptoms do you have? Any other family memebers with CMT? Do you have any children and if so do any of them have CMT? ~>Becky M. >HI IM NEW TO THE COMPUTER TO . I HAVE C.M.T. SO DOES MY DAUGHTER IM HAVING >A HARD TIME FINDING A DOCTOR TO I WOULD LIKE TO CHAT WITH YOU SOMETIME >EMAIL ME Ponnee@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Hi Cheryl, Many of us have gone through the same as you. It's heartbreaking to think of the mothers who do not have a computer. My search word was Misshaped Cranium. This led me to a Neuro in LA, and then this group. Mt daughter is 19 months, and she was fitted with her DOC Band at 15 months. As of tonight we have seen the most amazing improvement. She does not have Torticollis but you should jump on their group as well. Torticolliskids-subscribe Please take the time to sign my Petition Positional Plagiocephaly Petition http://www.petitiononline.com/0799/petition.html Check out the files section on Insurance questions!! Sierra 07/99 11/97 Redford, MI > Hello everyone. My name is Cheryl and my four month old baby has tort > and plagio. Like many of you, I have been very frustrated tryinbg to > get help for my baby. First, her doctors never diagnosed her tort. > Kate was born with congenital hip dysplasia which is associated with > torticollis. Neither her pediatrician or her ortho picked up on her > tort. I noticed at 3 months that her forehead seemed to be bulging > and one eye seemed slightly bigger than the other and one cheek > looked fuller than the other. Her left ear was larger and misshapen > from early on. I thought this was just the way she was going to look. > Finally, when she got old enough to hold her head up, I noticed the > neck tilt. I got on the computer and typed in " wry neck " and > diagnosed her myself! I can't tell you how little confidence I have > in her doctors. All the signs were there since birth, and they just > never really examined her close enough. When I took her to the ortho > doc who treats her for the hip dysplasia, he confirmed the tort and > told me some exercises to do. He never once mentioned her plagio or > the importance of repositioning her. I made her an appt. with cranial > tech and a craniofacial surgeon for Wednesday. Can anyone tell me > what to expect? Will the DOC band resolve her facial asymmetry > completely? Thank God that at 3 months when I noticed the left side > of her head being flat I started aggresive reposiotning on my own. > That helped some. Is there some debate as to whether this therapy > actually works? Has everyone been pleased with the results? Should I > fire her doctors? Or am I expecting too much? I tell you, I think > this is a big problem (plagio and tort not being diagnoised & > treated). I have had to totally take matters in my own hands up until > this point...I just feel like her docs have been NO help at all. By > the way, I have BCBS of Alabama...does anyone know if they pay for > the band? Any advice is greatly appreciated...sorry for the long > post. I look forward to getting to know all of you. Best of luck with > your own precious babies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Cheryl- I'm glad you found us. The advice and support I have received her has been invaluable! It's good that you have recognized the tort and plagio early. It is my understanding that the DOCband (as well as other bands and helmets) can correct facial assymetry. I don't mean to say that it will correct 100% of all facial assymetry all of the time, but I know that many people here have had good luck getting at least some of the asymmetry corrected. You are getting an early start with seeking treatment compared to some of us who started at 9 months, 12 months and even older!! You might consider joining torticolliskids (another egroup) and see what they have to say about tort - that definately needs to be resolved! Aggressive repositioning has been effective for some people here and some have not had any luck with it. It certainly is worth a try! I hope you will keep us posted on how your specialist appointment goes and let us know if you do decide to get the band! We have a BUNCH of DOCband parents in this group!! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Dear - welcome to the group. You will find a wealth of information and friendship here. You are lucky to be getting treatment at such a young age. I am sorry that I cannot answer any of your questions about the pillow or about Aetna. Hope that you are able to post pictures of your twins soon. Are you getting the Doc, Starband or locally made helmet? Glad to have you here - if there is anything I can, don't hesitate to ask. Amy(Max's mom- STARband 2/19) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Hi Amy! Thanks for the best wishes. We are getting a locally made helmet. I havent seen one yet, but according to the orthotist I spoke to today it is very similar to the Starband. How is Max doing in his - I assume that the 2/19 means he has been in it a few weeks now? Ill post some pics soon! Kimberley > Dear - welcome to the group. You will find a wealth of information > and friendship here. You are lucky to be getting treatment at such a young > age. > I am sorry that I cannot answer any of your questions about the pillow or > about Aetna. > > Hope that you are able to post pictures of your twins soon. > Are you getting the Doc, Starband or locally made helmet? > > Glad to have you here - if there is anything I can, don't hesitate to ask. > > Amy(Max's mom- STARband 2/19) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 >Welcome Kimberley! I am glad to hear that you are getting treatment soon. I don't know much about the pillow, so I can't help much with that. We got approved with Aetna for my son's DOC Band and got 100%. If you would like to e-mail me directly I can try to get you some information you might need. Good Luck! & 2/23/00 Hi! > > Im so glad I found you all. Ive spent a few hours reading the posts > here and looking at all the files, and Im just glad not to feel alone > in all this. My daughter Hope (4mos) was diagnosed just last week > with positional plagiocephaly and we go for a casting for a helmet on > April 2nd. Her twin brother, Evan, has a mild flattening on hte back > of his head too, and we are hoping to be able to adjust that with > repositioning. If not, he may also be going for a helmet. > > One question that immediately occurs to me is whether anyone has had > any success with the Knickknackpaddywhack cushions - > (http://www.knickknackpw.com). I thought you werent supposed to use > pillows with infants, so Im wondering whether to go this route or > not. > > > I would also love to hear from anyone who has had any luck with Aetna > insurance. > > Thanks for being there! > > Kimberley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 One question that immediately occurs to me is whether anyone has had any success with the Knickknackpaddywhack cushions - (http://www.knickknackpw.com). I thought you werent supposed to use pillows with infants, so Im wondering whether to go this route or not. ; I don't know of anyone who has used this (or other) pillows, but there has been a lot of interest. Also check www.snuglbuds.com and check out the "travelbud". You can use it as a positioner. I think these pillows would be fine during the day, under supervision, but I personally would not use them in the crib overnight. JMO Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support... ----- Original Message ----- From: kimberley.farrar@... Plagiocephaly Sent: Monday, March 19, 2001 4:56 PM Subject: New here Hi!Im so glad I found you all. Ive spent a few hours reading the posts here and looking at all the files, and Im just glad not to feel alone in all this. My daughter Hope (4mos) was diagnosed just last week with positional plagiocephaly and we go for a casting for a helmet on April 2nd. Her twin brother, Evan, has a mild flattening on hte back of his head too, and we are hoping to be able to adjust that with repositioning. If not, he may also be going for a helmet. One question that immediately occurs to me is whether anyone has had any success with the Knickknackpaddywhack cushions - (http://www.knickknackpw.com). I thought you werent supposed to use pillows with infants, so Im wondering whether to go this route or not. I would also love to hear from anyone who has had any luck with Aetna insurance.Thanks for being there!Kimberley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 , Welcome - I'm glad you found us! We have lots of parents with twins in this group so you are in good company! :-) As far as the pillow question you had - I would probably think twice about letting my baby use one through the night. That product as well as something called the butterfly pillow (made by Snuglebuds) would probably be better to be used when you are monitoring your child (like in the stroller or swing or maybe when they are laying on the floor with an overhead toy). My baby is 14 months old and to be able to get her to stay still and use a pillow through the night would require duct tape!! LOL From what I understand the butterfly pillow is a good one for repositioning and the doughnut pillow is to aid back sleeping. I've only seen the products online so someone correct me if I'm wrong. You have come to the right place. This group is an AWESOME source of support and answers. I'm glad you joined us!! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 " Anyways I want to try a cleanse where do I start and what do I do and is it painful or does it make you really sick? Help me please! Or is this gallbladder problems? " Hi: No one has answered this one and there are probably many people more qualified than I am to answer, but will respond to the request for help. Others are more than welcome to make comments on my views. If you are interested in doing a first time flush (as opposed to longer term treatment), my recommendation would be the flush that can be found at: http://www.curezone.com/cleanse/liver/huldas_recipe.asp For the purpose of clearing out gall stones it is not necessary to do all of the other cleansing first, as recommended at that site. Reasons for that particular formula as a 1st flush: 1. It works! And it works well. 2. In the several years since doing my first flush with that method, I haven't experienced or read of any problems associated with pain or stuck stones, which was my greatest fear in doing the first flush. When I did my first flush, I had not seen any testimonials about the flush, but was going on the recommendation of the Ask Tom Naturally site that the liver/gallbladder flush was the most important single cleanse that you could do to improve your health. 3. The Epsom salt clean out allows you to see the results of your flush. If you don't do the full intestinal clean out the stones will be intermingled with fecal material and will be hard to detect, and when you can't see results it is easy to become discouraged. There are statements made that the salts also " relax " the gallbladder and ducts, but no supporting evidence has ever been written on that aspect. Ornithine is also recommended to do the same thing though I haven't seen supporting evidence for it either, but I have always used it in my 15 flushes. Bottom line for me for the Epsom salts is that it allows you to see results. Also, the morning Epsom salts does more of the same thing, and may in fact prevent the " clumping " together of large quantities of stones, which could have a blocking effect in the colon. Dr. Mercola's site at: http://www.mercola.com/2002/feb/13/gall_bladder.htm also makes suggestions that I haven't yet tried, including using flax oil and radishes for longer term gallstone removal. In fact there are a few sites that recommend 1 or 2 radishes a day for gallstone expulsion. As for becoming ill, many people have reported nausea caused by either the Epsom salts and the olive oil. My personal view is that olive oil is not as critical as some believe it to be, and a less than virgin oil doesn't taste as bad and probably has the same results. I say that, because I passed gallstones after ingesting a fatty pork roast, followed an hour later with a large glass orange juice - made from frozen concentrate. I wasn't doing a flush, just having an evening meal. Both the animal fat and the orange juice defies every principal I've read on doing the flush, but was a message to me that perhaps the principals are more flexible than are commonly believed. Anyway, be sure that your Epsom salt water is cold, and my recommendation is to use distilled water because tap water contains chlorine which really reacts unfavorably with the Epsom salts, taste wise. Good luck in whatever method you choose. Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 --- Thank you for answering. I read the instructions and I like to know do you have to do the kidney and parasite thing first am confused. In gallstones@y..., JayTownsend@a... wrote: > " Anyways I want to try a cleanse where do I start and what do I do and is it > painful or does it make you really sick? Help me please! Or is this > gallbladder problems? " > > Hi: > > No one has answered this one and there are probably many people more > qualified than I am to answer, but will respond to the request for help. > Others are more than welcome to make comments on my views. > > If you are interested in doing a first time flush (as opposed to longer term > treatment), my recommendation would be the flush that can be found at: > > http://www.curezone.com/cleanse/liver/huldas_recipe.asp > > For the purpose of clearing out gall stones it is not necessary to do all of > the other cleansing first, as recommended at that site. > > Reasons for that particular formula as a 1st flush: > > 1. It works! And it works well. > > 2. In the several years since doing my first flush with that method, I > haven't experienced or read of any problems associated with pain or stuck > stones, which was my greatest fear in doing the first flush. When I did my > first flush, I had not seen any testimonials about the flush, but was going > on the recommendation of the Ask Tom Naturally site that the > liver/gallbladder flush was the most important single cleanse that you could > do to improve your health. > > 3. The Epsom salt clean out allows you to see the results of your flush. If > you don't do the full intestinal clean out the stones will be intermingled > with fecal material and will be hard to detect, and when you can't see > results it is easy to become discouraged. There are statements made that the > salts also " relax " the gallbladder and ducts, but no supporting evidence has > ever been written on that aspect. Ornithine is also recommended to do the > same thing though I haven't seen supporting evidence for it either, but I > have always used it in my 15 flushes. Bottom line for me for the Epsom salts > is that it allows you to see results. Also, the morning Epsom salts does > more of the same thing, and may in fact prevent the " clumping " together of > large quantities of stones, which could have a blocking effect in the colon. > > Dr. Mercola's site at: http://www.mercola.com/2002/feb/13/gall_bladder.htm > also makes suggestions that I haven't yet tried, including using flax oil and > radishes for longer term gallstone removal. In fact there are a few sites > that recommend 1 or 2 radishes a day for gallstone expulsion. > > As for becoming ill, many people have reported nausea caused by either the > Epsom salts and the olive oil. My personal view is that olive oil is not as > critical as some believe it to be, and a less than virgin oil doesn't taste > as bad and probably has the same results. I say that, because I passed > gallstones after ingesting a fatty pork roast, followed an hour later with a > large glass orange juice - made from frozen concentrate. I wasn't doing a > flush, just having an evening meal. Both the animal fat and the orange juice > defies every principal I've read on doing the flush, but was a message to me > that perhaps the principals are more flexible than are commonly believed. > Anyway, be sure that your Epsom salt water is cold, and my recommendation is > to use distilled water because tap water contains chlorine which really > reacts unfavorably with the Epsom salts, taste wise. > > Good luck in whatever method you choose. > > Jay > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 Dear bait bait, Jay had some great advice for you on what flush to try. It's at www.curezone.com Most of the flushers in here seem to use Dr. s method of cleansing the liver and gb because it is very easy to do. No pain at all if you follow the method correctly. The results will blow you away. :-)Read the testimonies on that site as well. It will make you feel more comfortable when you read what others are experiencing. If you have no pain in the gb then why is the doctor already talking about removing it before even seeing if you have stones in the gb with ultrasound? Bilburin levels should be able to be corrected with supplements instead of gb removal. Ask your doctor about that. Bilburin is an ingredience of your bile and this would suggest a problem in your liver and/or gb. Stones are formed from bad bile contents. Too much of an ingredient or too little. Bile has water, cholesterol, bile salts, and bilburin. The bilburin is what gives your stool it's color. Bad bile could cause problems with stool and bowel movements but bowel movement problems are caused by other problems as well. Bad bile stagnating in your gb will produce stones. And sometimes stones can form inside a sluggish liver too. Good luck, and try a flush or two. Can't hurt and can only improve your health situation. Don't let your doctor remove your gallbladder without ultrasound evidence of stones or a diseased gb. Just the elevated bilburin level shouldn't be a reason for gb removal. I'd try changing the levels with supplements and diet before surgery. Also if ultrasound does show stones in your gb you can always try flushing first to get them out before loosing your organ. Hope this helps in some way. Barry. > I have not felt good for a couple of weeks thought it was just the > flu so went to the doc and she did a CBC and found my bilburin level > was elevated and said it coulf be gastritis or gallstones. My > symtoms have been bloated burning stomach nausea sweaty and chills > and fatigue no pain.She wants me to come back in a week to do another > CBC test and if still elevated she is talking about doing a ultra > sound and removing my gallbladder. I dont want surgery! > I have had problems with my bowels for awhile now and was just > diagnosed with diverticulitis and my problem was I never could get my > bowel to come out. Would gallbladder cause this? > Anyways I want to try a cleanse where do I start and what do I do and > is it painful or does it make you really sick? Help me please! Or is > this gallbladder problems? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Hi there Spr52, Welcome and I sure do hope that you don't get any misleading info. I think you'll find this to be a pretty friendly board loaded with folks that want nothing more then to help anyone who needs it. You are so right to realize that this info is simply a recount of our experiences, which is all we have. Good luck in your persuit of good health and please let us know how you make out. Joyce. >From: "spr52" >low dose naltrexone >Subject: [low dose naltrexone] New here >Date: Tue, 03 Jun 2003 00:36:33 -0000 > >Hello everyone, > >I am new here and was diagnosed with multiple choices of >diseases. As per my new doctor, I probably have fibromyalgia, >definitely proriasis, arthritis or psoriatic arthritis, possible >lupus....first blood test positive-second test negative. I have a >white coated tongue and was told that was thrush. I have some >small lesions on my tongue and a small white bump in the right >front side of my inner cheek. > >I am now on LDN, tonight being the 5th night. I am wondering if >there is anyone else out there that has the same or very similar >health concerns I described above. That has been on LDN >longer than I and what results you have had. I also have a hiatal >hernia and severe pain in the left chest ribs 5 through 8 or very >close. Really close to the center of chest and right above heart >region of chest cavity. My surgery for that was 4 + years ago to >remove a non-cancerous duplication cyst. I feel like the medicine >is working. With so many issues I would like to know how rapidly >anyone else has progressed with LDN. > >Thanks in advance for any answers. I am a very candid person >too. Anyone who may wish to play a practical joke or reply with >misleading information. Please move on and play your games >with people who are in good health. This is far too important to >me to have someone play deceptive games. This has already >happened to me. I am not gullible and I will get several opinions >from professional people. I am smart enough to to know that >replies are simply recounts of what one prson experienced and >not to be implemented without the advice of a person more >knowledgible than I. Common sense is one of my strongest >traits. > >Thank you, > >SPR52 > MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Corinna: welcome to the group. You will probably have more energy than ever if you do CRON correctly. Since you've experienced eating disorders in the past, just be moderate about CRON. We have several sad stories to tell about a few CRONIES who went to extremes and wound up with health problems. Read all our files. If you just start out with " CR MADE Easy " and go on from there, you'll do OK. on 12/6/2003 1:18 PM, Corrinna at corrinna@... wrote: > This is probably stupid but do you find you have energy for the day > with this lifestyle, or do you tire easily? Its funny cause when > I " diet " I'm tired...but right now I'm not dieting or doing > anything else and I have very little energy to get thru my days. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 >>>I am sure that most of the stones [are] initally formed and stored in the liver.<<< Spot on! There are pictures of livers in the images either in the archives here or on curezone that show livers with stones in the ducts. Blessings Mama. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Aspirin may help with your symptoms, but there are medicines called Disease Modifying Anti-Rheumatic Drugs (DMARDs) that slow or halt the progression of RA, and these are usually prescribed to people with confirmed RA. It doesn't sound like your doctor is up to date on RA treatment. I would definitely seek out a rheumatologist if I were you. Time is of the essence in treating RA. Sierra > > My name is Tina. I'm a 38 yr. old mom of 3. Just diagnosed today > with RA. I'm scared sh*tless. Crying all day. Where do I begin? I > have a million questions. My PCP said she recommends just keeping me > on 3 aspirin 3 X a day that she suggested today as the Aleve hasn't > been doing the trick. But shouldn't I get my ass to an RA Doc ASAP?! > I've got damn good insurance and intend to make good use of it! In > the past 2 months out of no where I've started having lung problems > too. I got an upper resp. infection in mid May, mild but the cough > has been lingering for 2 months and refuses to go away!!! Now I've > got a bad rash on my hands and feet. I stumped the Doc's for 3 days > on that....untill the blood tests came back. Now we know why my > hands have been aching so badly for months. And my feet before that, > although I do have fallen arches to help with the foot pain. Unsure > if the RA is why my hips hurt too, because chairs we sit in at work > suck REAL BAD. We're fighting for new ones. So should I call my PCP > in the AM and ask for the name of a go RA Dr.?? I'm thinking YES!!! > This is my LIFE here! My husband and I want to adopt a baby girl > from China and I want to be able to raise her and be her Mom! Not a > suffering crying ball of pain! Also if there is anyone out there in > New Hampshire that knows of a support group please e-mail me the > info. Thanks! ~Tina~ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Welcome to the group. I sure agree with your desire to get to a rheumatologist and start aggressive treatment. Here’s a link to an English booklet that I think has good and easily readable information about RA. http://www.arc.org.uk/about_arth/booklets/6033/6033.htm If your PCP will not refer you to a rheumatologist I think you should try to make an appointment on your own, and perhaps think of changing PCPs as well. RA can be hard to diagnose and blood work is only one of seven criteria for diagnosing RA and any four criteria qualify for a positive diagnosis. However, many other things have some symptoms in common with RA (including blood work) so it does take a rheumatologist and often some time to get a firm diagnosis. I don’t know about support groups but the Arthritis Foundation has chapters throughout the country and there may be one near you. http://www.arthritis.org/default.asp RA is frightening especially to begin with but most people are fairly well controlled within a year or two but it does take time to find out what medications and dosages are right for you. Let us know how you make out. God bless. From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of travswife2003 Sent: Wednesday, June 28, 2006 9:41 PM Rheumatoid Arthritis Subject: New here My name is Tina. I'm a 38 yr. old mom of 3. Just diagnosed today with RA. I'm scared sh*tless. Crying all day. Where do I begin? I have a million questions. My PCP said she recommends just keeping me on 3 aspirin 3 X a day that she suggested today as the Aleve hasn't been doing the trick. But shouldn't I get my ass to an RA Doc ASAP?! I've got damn good insurance and intend to make good use of it! In the past 2 months out of no where I've started having lung problems too. I got an upper resp. infection in mid May, mild but the cough has been lingering for 2 months and refuses to go away!!! Now I've got a bad rash on my hands and feet. I stumped the Doc's for 3 days on that....untill the blood tests came back. Now we know why my hands have been aching so badly for months. And my feet before that, although I do have fallen arches to help with the foot pain. Unsure if the RA is why my hips hurt too, because chairs we sit in at work suck REAL BAD. We're fighting for new ones. So should I call my PCP in the AM and ask for the name of a go RA Dr.?? I'm thinking YES!!! This is my LIFE here! My husband and I want to adopt a baby girl from China and I want to be able to raise her and be her Mom! Not a suffering crying ball of pain! Also if there is anyone out there in New Hampshire that knows of a support group please e-mail me the info. Thanks! ~Tina~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Welcome back. RA can be a hard disease to diagnose and I like what your Nurse Practitioner did for you in ordering a Medrol pack. That’s a strong anti-inflammatory and I think it is more useful in identifying inflammation than any blood test. You might also ask about a blood test for anti-CCP that is like the rheumatoid factor test but less likely to give a false positive. The American College of Rheumatology has seven criteria for diagnosing RA and because RA can be so variable they only require any four of them to be positive for a diagnosis. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks Arthritis of 3 or more joints, lasting for at least 6 weeks Arthritis of the hand joints, lasting for at least 6 weeks Symmetric arthritis, lasting for at least 6 weeks Rheumatoid nodules Positive rheumatoid factor (blood test) Joint changes on x-ray There are also over 100 different kinds of inflammatory arthritis and although RA is the most common there are many others that have some symptoms in common with RA. It often takes a good rheumatologist a year or more to come to a definite diagnosis so don’t give up on trying to get a diagnosis. However, I am disappointed in your doctor in not giving your symptoms more consideration and treatment. If you can get a second opinion I would suggest it. http://www.arc.org.uk/about_arth/booklets/6033/6033.htm The link above is to a booklet that I like to give a lot of information about RA. Keep us posted on how you are doing and God bless. From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Sent: Sunday, July 16, 2006 8:05 AM Rheumatoid Arthritis Subject: new here Well, not really new. I joined this group probably a year ago when I suspected these flare ups I was having might be RA. After 4 years of this (yes, I'm slow!) I finally went to a rheumy. He was recommended by a coworker and I was warned that he was a good doctor, but had a crummy bedside manner. I went anyway. My RA, ESR, and CRP were only slightly elevated, and the joints I complained about he said were not joints typically affected by RA (hips, shoulders, elbows occasionally, & knees). He fixated on my right hand thumb joint, which was very swollen and tender (Couldn't hold my hairbrush or open a bottle of water, or let my 3 year old students high five me). He said that was osteo and all he could do was give me a cortesone shot which did help some. Anyway, he said he couldnt do anything until I was in pain, so come back when I was in pain. He also said he thought it might be Palindromic Rhuematism, but just keep taking the celebrex I was on. I was discouraged at a definitive diagnosis (not that I WANT RA, I just want relief), so I didn't look for answers anymore until this last flare up a few weeks ago. I had pnuemonia and on top of that a flare up while I was 1000 miles away on vacation. I was miserable. I finally went back the other day and saw the nurse practitioner instead of the doctor. I LOVE HER! She listened to my list of complaints and was very concerned for me. She prescribed medrol for one week to get the inflammation under control (and 2 days before rheumy appt. I had cortesone shots in my feet so I could walk- been hobbling for over a year). She also prescribed valtorin (?) instead of the celebrex which wasn't covered by my insurance, and is getting me started on plaquenil after my eye exam. She also prescribed MRI's of my wrists, hands, and hips. (The wrist pain is new since last year- so I'm worried about progressive damage). I'm 45 year old female who has fought & won the battle against Hepatitis C (6 years clear now), and I feel this diagnosis may be connected to the interferon I took for the hep c. I value a good support group; it helped me tremendously though the hep c issues, and now I'm vice pres of a hep c 501c3 non profit helping others without insurance get treatment & medical care. I look forward to learning about this disease and the medications, side effects, so I can be a good advocate for my own health. I would appreciate any feedback from you to help me learn & deal with this. Take care, PS. Sorry for writing a novel! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Related RA with Hepatitis C http://www.medscape.com/medline/abstract/12610800?queryText=cross%20sectional%20studies On 7/16/06, Harold Van Tuyl <hvantuyl@...> wrote: Welcome back. RA can be a hard disease to diagnose and I like what your Nurse Practitioner did for you in ordering a Medrol pack. That's a strong anti-inflammatory and I think it is more useful in identifying inflammation than any blood test. You might also ask about a blood test for anti-CCP that is like the rheumatoid factor test but less likely to give a false positive. The American College of Rheumatology has seven criteria for diagnosing RA and because RA can be so variable they only require any four of them to be positive for a diagnosis. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks Arthritis of 3 or more joints, lasting for at least 6 weeks Arthritis of the hand joints, lasting for at least 6 weeks Symmetric arthritis, lasting for at least 6 weeks Rheumatoid nodules Positive rheumatoid factor (blood test) Joint changes on x-ray There are also over 100 different kinds of inflammatory arthritis and although RA is the most common there are many others that have some symptoms in common with RA. It often takes a good rheumatologist a year or more to come to a definite diagnosis so don't give up on trying to get a diagnosis. However, I am disappointed in your doctor in not giving your symptoms more consideration and treatment. If you can get a second opinion I would suggest it. http://www.arc.org.uk/about_arth/booklets/6033/6033.htm The link above is to a booklet that I like to give a lot of information about RA. Keep us posted on how you are doing and God bless. From: Rheumatoid Arthritis [mailto: Rheumatoid Arthritis ] On Behalf Of Sent: Sunday, July 16, 2006 8:05 AM Rheumatoid Arthritis Subject: new here Well, not really new. I joined this group probably a year ago when I suspected these flare ups I was having might be RA. After 4 years of this (yes, I'm slow!) I finally went to a rheumy. He was recommended by a coworker and I was warned that he was a good doctor, but had a crummy bedside manner. I went anyway. My RA, ESR, and CRP were only slightly elevated, and the joints I complained about he said were not joints typically affected by RA (hips, shoulders, elbows occasionally, & knees). He fixated on my right hand thumb joint, which was very swollen and tender (Couldn't hold my hairbrush or open a bottle of water, or let my 3 year old students high five me). He said that was osteo and all he could do was give me a cortesone shot which did help some. Anyway, he said he couldnt do anything until I was in pain, so come back when I was in pain. He also said he thought it might be Palindromic Rhuematism, but just keep taking the celebrex I was on. I was discouraged at a definitive diagnosis (not that I WANT RA, I just want relief), so I didn't look for answers anymore until this last flare up a few weeks ago. I had pnuemonia and on top of that a flare up while I was 1000 miles away on vacation. I was miserable. I finally went back the other day and saw the nurse practitioner instead of the doctor. I LOVE HER! She listened to my list of complaints and was very concerned for me. She prescribed medrol for one week to get the inflammation under control (and 2 days before rheumy appt. I had cortesone shots in my feet so I could walk- been hobbling for over a year). She also prescribed valtorin (?) instead of the celebrex which wasn't covered by my insurance, and is getting me started on plaquenil after my eye exam. She also prescribed MRI's of my wrists, hands, and hips. (The wrist pain is new since last year- so I'm worried about progressive damage). I'm 45 year old female who has fought & won the battle against Hepatitis C (6 years clear now), and I feel this diagnosis may be connected to the interferon I took for the hep c. I value a good support group; it helped me tremendously though the hep c issues, and now I'm vice pres of a hep c 501c3 non profit helping others without insurance get treatment & medical care. I look forward to learning about this disease and the medications, side effects, so I can be a good advocate for my own health.I would appreciate any feedback from you to help me learn & deal with this.Take care,PS. Sorry for writing a novel! Quote Link to comment Share on other sites More sharing options...
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