Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 In a message dated 3/1/2003 4:34:17 AM Eastern Standard Time, Ollie writes: > Has anyone had this syndrome and still been able to get > pregnant without the shots or other clinical assistance? > I'm glad I found this group.talk to you soon, take care > Dear Ollie, There are files and old posts on the site that will give you detailed information on this subject. Your husband is taking a form of Testosterone replacement therapy, which is fine but won't generate sperm production. I am sure the endocrinologist will be telling you this. If he has a problem with his pituitary gland, the missing hormones will have to be replaced using various kinds of drugs, which may or may not require several injections per week. Everyone hates injections but you get used to them and it's really not that bad. Cost is a more serious factor with the " fertility " drugs. There also is a drug named Clomid which is thought to " jumpstart " the pituitary, but I have never met anyone that has actually used it successfully, maybe someone on the list has used it with success. Please be encouraged, several of the guys on the list have been successful in fathering children with therapy. Yours, Dean in Cincy Dean Carroll Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Welcome to the group, . Our stories about how we got here seem so similar. The fatigue and lack of energy is what makes this so hard for to take and makes us too old before our time - we are all *too young* for this Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hello, I read your e-mail, and as a mother of a almost 10 year old boy with Apraxia do not wait. We are from a very small town with a pedieatrician who was both mine and my husbands. He kept telling us our son was a late talker and not to worry even when my mother was telling me something was wrong.l Finally got fed up when my son was 3 1/2 and had a 5 word vocabulary and we took him to a children's hospital where he was diagnosed. If you see a problem then dont wait. The post important advice I ever got from a therepist was be prepared to be your child's advocate because no one else will do it for you and I can tell you it's been a fight every step of the way but this website is a good way to educate yourself . Now when I go to a doctors appointment or a ppt at school I'm the one in charge. So good luck and I hope this helped. Ini Olatunbosun <itsini@...> wrote: Hello! We have a 28 month old son who does not talk yet. We are thinking about getting him re-evaluated...again! All we keep getting is that he is a late talker, but after reading all the wonderful information posted from all you wonderful parents, we suspect it may be something more. Can anyone please give us contact information for a good therapist in the Michigan area? Or anywhere in close by. We are willing to travel. And please, if you have any information that you feel will help us in our pursuit of speech for our child, we will really appreciate it. Thank you! Sincerely, Tz anxious Mom Take care and God Bless! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 I would suggest Kaufman, in West Bloomfield, Michigan. We took our (then) 24 month old son to see her and it was the best money we have spent so far in regards to his evaluations and therapy. I found to be open, honest, knowledgable, straightforward and EXCEPTIONAL at working with my child. She did a thorough eval which included 3 long distance telephone conferences with me (we live in Oklahoma), she had us send a video of my son ahead of time so she could see him in his therapy and preschool environment and plan her evaluation accordingly, she spent a good 45- 60 minutes evaluating my child in-person, she videotaped the eval for his treating therapists back in Oklahoma, and then she sat and talked with my husband and I for another hour or so about her findings and recommendations. We will likely take our son to her for treatment in summer of 2005. does therapy sessions for out-of-town kids in the summer where they get short, intensive rounds of therapy. You can attend however many weeks you can afford to live in Michigan!! She also speaks at workshops around the country and allows parents to eat lunch with her so that she can answer any specific questions you have. My advice to you----DO NOT WAIT ANOTHER DAY to get your son started in therapy. He needs to be evaluated by your states early intervention program. My son began therapy at 16 months of age and has made tremendous progress. I suppose our pediatrician may have taken my concerns very seriously as I am a speech pathologist myself, but at your childs age EVERYONE should be taking his lack of speech seriously! You have a fabulous therapist, who is nationally and internationally known, near to you. I would definitely see her. Just my twenty-two cents worth, Kathy > Hello! > We have a 28 month old son who does not talk yet. We are thinking about getting him re-evaluated...again! All we keep getting is that he is a late talker, but after reading all the wonderful information posted from all you wonderful parents, we suspect it may be something more. > > Can anyone please give us contact information for a good therapist in the Michigan area? Or anywhere in close by. We are willing to travel. And please, if you have any information that you feel will help us in our pursuit of speech for our child, we will really appreciate it. > > Thank you! > Sincerely, > Tz anxious Mom > > Take care and God Bless! > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Dear Jenn and Kathy, How are you doing? Thank you so much for taking the time to respond to my mail and also to give the vital information we need to set things in motion. This group has really been a great source of inspiration, and I pray we all find the answers and speedy results to help our kids express themselves through speech. Thanks once again! Take care and God Bless! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Hi Lori, Well, if you are looking for wackos you have come to the right place. Eh ummm.........what I meant to say was if you are looking for fellow PA sufferers you have come to the right place. lol Seriously though, welcome to the group. Hopefully you will get all your questions answered. The universal agreement in the group is that in most cases our knowledge on the disease increases greatly due to the knowledge of the members here, whether it be from experience of having PA over several years or that and a medical background too as some folk have. Unfortunately I don't yet have any Scientific awards. I think it is something to do with the fact that I was a maintenance technician and not a scientist. lol I am currently on MTX among other things. It seems that the doctors would be happier if we did not drink alcohol at all while on it but some of them (including mine) will say that it is ok to take the occasional drink. I think that it is a case of them worrying that if they gave an inch, some people will take a mile. So some of us do and some don't. (Take the odd drink I mean, not take a mile. lol) Talk to your own guy and see what he has to say about it. I do take the odd glass of wine or beer but I don't go mad. Hope you get what you are looking for from the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Thank you Kathy F!- tell me, does anyone out there have access to actual Methotrexate statistics (ie. # per thousand who experience severe side effects?) Would love to have that info... I have the flu today - takes my mind off the PA though, so I guess that's a good thing. IAW > > In any chat group, actually. Here is the deal - I am 42, just > diagnosed this summer, saw a specialist within two weeks, started > methotrexate 6 weeks ago, still pretty much feel like hell. Sore > hands and feet, especially, difficult to walk in the am. I am doing > ok mentally - many other blessings, and I figure people have a lot > worse crap thown at them - but sure would be nice to share with other > people dealing with this odd bit of life experience. > > So - methotrexate scares me in terms of long term implications - is > it worth putting this poison in my body? > > Does it piss anyone else off that they have been told they have a > chronic painful disease PLUS they can't have their favourite red wine > at a dinner party? Seems an unreasonable twist of fate... > > Whwn will I likely start to feel better...anyone have statistics on > how many people actually get liver damage from this drug? > > What about COX-2 inhibitirs - I am currectly taking Bextra - does > this seem like folly considering the Vioxx revelations - known to > everyone, it seems, except most doctors...anyone know of viable > alternatiives - or maybe I won't need Bextra if the Methotrexate > starts to work? > > What about supplements for the liver? And for other symptoms...is > glucosomine any good for our kind? Omega 3? Etc? > > I'll leave it at that for now and see what pops up - a bit nervous > everyone out there is a whacko but will take my chances as I > desperately need information. > > Would prefer people with a moderately dry sense of humour or, > conversely, award winning medical scientists looking to spread thir > info - oh yea, and has anyone heard of Dr. Merkin and what do you > think of all that....antibiotics? Does it work? Is he a whacko? > > Ta - Lori, the Incredible Arthritic Woman > > [Editor's Note: Welcome to list, Incredible One. MTX is a scary drug, however, it has been on the market for many years so unlike many of the rest of the meds we're on, its long term side effects are widely known. There are people who have been on MTX for decades with no adverse problems. There are others who had to come off it after just a few doses. Presumably your rheumy will have your blood work monitored very frequently. This will ensure that any problems in your liver or elsewhere will be detected quickly. Some rheumatologists say that you can never have a drink again, while some will say it is OK to have a glass of wine for your birthday or some other special occasions. If MTX is to provide you the relief you seek, it should begin helping you after 8 or 10 weeks. If it doesn't " kick in " by then, talk to your doctor about changing your medication. You've come to a good place to get the information you need with an occasional splash of humor. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Welcome Lori -- Sounds like you came to the right place.....this place is full of " it " .....I mean full of fun, knowledgeable, caring people so you should fit right in. I am the least knowledgeable so will let others answer your important questions except to say that I started out mild and have progressed quickly over the 3 years since diagnosis and I take whatever meds I can to keep me going because that is the most important to me. I don't see any point in living longer if I can't live the way I want to. Everybody has to decide that for themselves though. Keep posting, Cheri lawlesslori <lawlesslori@...> wrote: In any chat group, actually. Here is the deal - I am 42, just diagnosed this summer, saw a specialist within two weeks, started methotrexate 6 weeks ago, still pretty much feel like hell. Sore hands and feet, especially, difficult to walk in the am. I am doing ok mentally - many other blessings, and I figure people have a lot worse crap thown at them - but sure would be nice to share with other people dealing with this odd bit of life experience. So - methotrexate scares me in terms of long term implications - is it worth putting this poison in my body? Does it piss anyone else off that they have been told they have a chronic painful disease PLUS they can't have their favourite red wine at a dinner party? Seems an unreasonable twist of fate... Whwn will I likely start to feel better...anyone have statistics on how many people actually get liver damage from this drug? What about COX-2 inhibitirs - I am currectly taking Bextra - does this seem like folly considering the Vioxx revelations - known to everyone, it seems, except most doctors...anyone know of viable alternatiives - or maybe I won't need Bextra if the Methotrexate starts to work? What about supplements for the liver? And for other symptoms...is glucosomine any good for our kind? Omega 3? Etc? I'll leave it at that for now and see what pops up - a bit nervous everyone out there is a whacko but will take my chances as I desperately need information. Would prefer people with a moderately dry sense of humour or, conversely, award winning medical scientists looking to spread thir info - oh yea, and has anyone heard of Dr. Merkin and what do you think of all that....antibiotics? Does it work? Is he a whacko? Ta - Lori, the Incredible Arthritic Woman [Editor's Note: Welcome to list, Incredible One. MTX is a scary drug, however, it has been on the market for many years so unlike many of the rest of the meds we're on, its long term side effects are widely known. There are people who have been on MTX for decades with no adverse problems. There are others who had to come off it after just a few doses. Presumably your rheumy will have your blood work monitored very frequently. This will ensure that any problems in your liver or elsewhere will be detected quickly. Some rheumatologists say that you can never have a drink again, while some will say it is OK to have a glass of wine for your birthday or some other special occasions. If MTX is to provide you the relief you seek, it should begin helping you after 8 or 10 weeks. If it doesn't " kick in " by then, talk to your doctor about changing your medication. You've come to a good place to get the information you need with an occasional splash of humor. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Hi Lori: I think the main reason that they don't want people drinking while on MTX is because MTX is hard on the liver, and so is alcohol. Poor liver.] I was on Bextra for a very short time, and I found it wasn't the anti-inflam for me. It really messed around with my ability to reach deep sleep, and I got very exhausted, and incoherant. My Rhumy tried to tell me I was depressed, but I knew better than that. I stopped the Bextra, because he said " for your own peace of mind, to show you that it's not the drugs, go ahead and stop the Bextra if you want " . I did, and my sleep returned to normal. My rhumy was quite dismissive and condecending about the entire thing, so I got a new one. Don't be afraid to change doctors if you need to. I'm awfully glad I found this group, I've learned more in the last month about my disease than I did the entire time I've had it, thanks to the great people here. It's also nice to have a place to speak about something that isn't very common, with people who understand what you're going through. Feel free to come here to talk, ask questions, rant, etc. We're here to listen. A problem shared is a problem halved. Bright Blessings to you Lori, and keep posting! Crystal >lawlesslori <lawlesslori@...> wrote: > >In any chat group, actually. Here is the deal - I am 42, just >diagnosed this summer, saw a specialist within two weeks, started >methotrexate 6 weeks ago, still pretty much feel like hell. Sore >hands and feet, especially, difficult to walk in the am. I am doing >ok mentally - many other blessings, and I figure people have a lot >worse crap thown at them - but sure would be nice to share with other >people dealing with this odd bit of life experience. > >So - methotrexate scares me in terms of long term implications - is >it worth putting this poison in my body? > >Does it piss anyone else off that they have been told they have a >chronic painful disease PLUS they can't have their favourite red wine >at a dinner party? Seems an unreasonable twist of fate... > >Whwn will I likely start to feel better...anyone have statistics on >how many people actually get liver damage from this drug? > >What about COX-2 inhibitirs - I am currectly taking Bextra - does >this seem like folly considering the Vioxx revelations - known to >everyone, it seems, except most doctors...anyone know of viable >alternatiives - or maybe I won't need Bextra if the Methotrexate >starts to work? > >What about supplements for the liver? And for other symptoms...is >glucosomine any good for our kind? Omega 3? Etc? > >I'll leave it at that for now and see what pops up - a bit nervous >everyone out there is a whacko but will take my chances as I >desperately need information. > >Would prefer people with a moderately dry sense of humour or, >conversely, award winning medical scientists looking to spread thir >info - oh yea, and has anyone heard of Dr. Merkin and what do you >think of all that....antibiotics? Does it work? Is he a whacko? > >Ta - Lori, the Incredible Arthritic Woman > >[Editor's Note: Welcome to list, Incredible One. MTX is a scary drug, >however, it has been on the market for many years so unlike many of the >rest of the meds we're on, its long term side effects are widely known. >There are people who have been on MTX for decades with no adverse problems. > There are others who had to come off it after just a few doses. >Presumably your rheumy will have your blood work monitored very frequently. > This will ensure that any problems in your liver or elsewhere will be >detected quickly. Some rheumatologists say that you can never have a drink >again, while some will say it is OK to have a glass of wine for your >birthday or some other special occasions. If MTX is to provide you the >relief you seek, it should begin helping you after 8 or 10 weeks. If it >doesn't " kick in " by then, talk to your doctor about changing your >medication. You've come to a good place to get the information you need >with an occasional splash of humor. Kathy F.] > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi Micky, You certainly have a way with words. Excellent answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Well said Micky Suzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Micky is right about the alcohol... my docs wouldn't let me have any at all not a drop!!! Tom in Anchorage > > Hi Lori > > Yes this disease is a real pain! Yes you're going to feel like a leper of > society and yes MTX equals no alcohol!! Yes Your in pain now and it seems > like there is no end, and yes your friends and family won't understand, and > yes you may even feel that you didn't deserve this and that you want to kick > the cat and whatever is in the way, and yes MTX scares the hell out of > people, yes the -2 drugs seem to have a bad effect on yr heart and yes > the biologics have risks associated with all kinds of things, and yes you > will search the web looking for the answers to a disease that has no known > cure! And yes I know all this because that is exactly how I felt two and a > half years ago when this disease reared it's ugly little head! > > That's the bad news! So if we get all of that out of the way, let me > introduce myself. > > My name is Micky and like I said I have had PA for 2 and half years. Today > I am back jogging and playing with my kids and leading a pretty good life > even with the PA. At the start it was a dark cloud over my head and I had > all these bad fears and worries going through my head! Just like you in > fact. But as the Jedi would say " there is a good side " . > > The drugs they have out now for this disease are very good in fact some > people have gone into remission from them. Ok there are risks but at the end > of the day there are risks everyday in life and if you feel as bad as you > described then I reckon you fancy your chances with lady luck. If you want > to play the lottery then the drugs of choice are -2, Remicade, Enbrel, > Amevive, and the dreaded MTX. You never know your numbers might come up! And > you might find your pot at the end of the rainbow! My personal pot is > Arcoxia but seeing as it is made by Merck I think it won't be long before > they decide that this one is too dangerous for us PA'ers to take on a > regular basis, so I might have to jump ship and get on the New biologics at > some stage. But that is for another day and I am quite happy staying on > Arcoxia until they shelve it (if they do) The PA has a wonderful way of > making you lighten up that I never thought possible, in that it has shown me > how much I appreciate the things around me, and have stopped fussing over > mundane stuff like work !! Lol. No seriously I do have a new outlook on > life and I am more easy going than I used to be which cannot be a bad thing > and I have more patience now where before I had Zero ! I can also appreciate > what it means for real people who have real problems like no arms and legs! > and for people who have lost loved ones through no fault of there own. My PA > in comparison is peanuts! It's good how even when you feel you should get on > the pity pot that you realise that there are worse off people out there, and > believe me at the beginning of this I did not think this was possible! > Since this PA bit my ass I have been on a personal crusade to make myself > feel better and I would have to say that to some extent it has worked. I > have read up on all kinds of details to do with PA and can even have a chat > to Orin (a researcher on here who knows more about PA than probably the rest > of the US science core) without feeling to far out of my Depth ! I have > learnt through this site that there are people out there who care enough to > say Hi now and then and ask you how the kiddies are! (We are definitely not > freaks or whackos lol) Although when we get talking about our skin and nails > it might sound like it! No you have come to the right place Lori as I'm sure > your learn over the next few weeks that most of us have a dry sense of > humour and that in spite of all our ailments we are a pretty happy bunch of > people. > > Going back to the alcohol thing with MTX and all I will say is that you can > have the occasional glass now and then without it having too much effect as > long as it is now and then again. If yr a drunkard then this drug is > definitely not the one for you, but that may mean they just put you on > another drug that does not have such a big effect with alcohol. > > Thanks for your post and welcome to the group > > PS: in reply to another post about age etc. My details are as follows:- > > > Age 32 PA 2 yrs 6 months psoriasis 12 yrs married 7 yrs and plan to > live at my pace (fast) another 60 years! > > Micky > London Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 hi lorrie, I'm Carla from Nebraska, age 26 and had pa for about three years. I am on a variety of medications, but do take the mtx and diclofenac for an anti-inflamatory. vioxx was the best thing for me, unfortunately it's no longer! I still drink occasionally even though I'm on the mtx. I will say, I discovered that you cannot take an anti-biotic while taking the mtx. If you need to take an anti-biotic, you need to stop the mtx...or the anti-biotic won't work. I found this out after two sinus infections and urinary tract infection. You can go back to the mtx after you've finished the anti-biotic. I know you've found a great group...I sure feel that we're all here to listen, be there for a shoulder, and so much more. Good luck, and you'll find the answers you need someday soon as for what meds will help you! Everyone is different and meds react differently to others, but keep your chin up!!~ Carla --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.792 / Virus Database: 536 - Release Date: 11/9/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 In a message dated 11/11/04 9:54:42 PM Central Standard Time, claesch@... writes: vioxx was the best thing for me, unfortunately it's no longer! I wonder if a person were to get a lawyer and have an airtight contract written up stating that the user fully understands the increased risk of heart disease and is willing to accept that as well as any as yet unknown risks and to release the maker of vioxx from any and all claims of harm from the use of vioxx if they would continue to provide it? I remember reading on a different message board a post by a woman with ridiculously high cholesterol who had been using Baycol with excellent results until it was pulled from the market in fear of massive and numerous settlements due to critical side effects. In her case nothing else had come close to being as effective as the Baycol had and I think she made an excellent case for the risks of using the drug being lower than the risks of not using the drug. With Vioxx it might be more difficult to convince law makers and drug regulators because few people who havent experienced severe arthritis could imagine how much it can reduce your quality of life. From being on all these message boards I know that there are more than a few who would willingly, in full awareness of the risks, wager quantity for quality. There is some group whose name I cant remember who have made it their mission in life to attack drugs with the ultimate goal of having them banned. Though their intentions are good, bless their hearts, they have succeeded in getting many beneficial and in some cases life saving drugs pulled from the market. Not only do so many loose that tool to manage their disease with it will also increase the cost of any drug that may be developed to take it's place. The FDA has stringent rules for how a new drug is to be tested but nothing is perfect. Document and quantify any adverse reactions and let the consumer decide if the risk/reward ratio is acceptable. The drug companies jump through a lot of hoops in efforts to make sure there are no surprises with their products. But if 100 million people use a product SOMEBODY is going to have an unusual negative reaction to it. They certainly dont want to kill or maim their customers. I believe that people should have to study to some extent any drug that is to be prescribed so that they full well understand what the risks of complications are and sign a contract stating so which protects the prescribing doctor and the maker of the drugs from billion dollar class action law suits. On a similar note of laws designed to protect ourselves from ourselves, I dont see why it should be anyone else's concern who I choose to perform medical prodedures on me. I dont believe it should be a concern of the Government nor an insurance company. I see the value in requiring any practitioner(sp?) to keep and submit records so that anyone contemplating using that practitioners services can review their performance first but if I respect a veterenarian to perform minor surgery on me then why should anyone else have right to interfere? I could accept third party involvement in the situation of a person who is not capable of understanding such as a child, alzheimer patient or coma victim but ah well you all know what I mean just let me make my own decisions. Gee I think I woke up on the wrong side of the armchair? Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Orin, I totally agree with you. I feel that in this day and age so many people abrogate personal responsiblity that it makes it difficult for the rest of us to be allowed to make informed decisions. I have discussed viox with my md and there have been cases where it was prescribed to patients with risk factors for heart problems and if you factor out those cases the results change dramatically. It is the same with enbrel. Most statistics ignore the fact that having an immune system disease increases the chance of lymphoma anyway and that should be factored into any decsion made about its use. Perhaps a run to Canada for vioxx? or has it been withdrawn from the market there? And now there are questions about bextra because it can cause heart problems when used intrevenously sp? during heart surgery? Why should that make it impossible for the rest of us to use it if we choose? jerre > > In a message dated 11/11/04 9:54:42 PM Central Standard Time, > claesch@n... writes: > vioxx was the best thing for me, unfortunately it's > no longer! > I wonder if a person were to get a lawyer and have an airtight contract > written up stating that the user fully understands the increased risk of heart > disease and is willing to accept that as well as any as yet unknown risks and to > release the maker of vioxx from any and all claims of harm from the use of > vioxx if they would continue to provide it? > I remember reading on a different message board a post by a woman with > ridiculously high cholesterol who had been using Baycol with excellent results until > it was pulled from the market in fear of massive and numerous settlements due > to critical side effects. In her case nothing else had come close to being > as effective as the Baycol had and I think she made an excellent case for the > risks of using the drug being lower than the risks of not using the drug. > With Vioxx it might be more difficult to convince law makers and drug regulators > because few people who havent experienced severe arthritis could imagine how > much it can reduce your quality of life. From being on all these message > boards I know that there are more than a few who would willingly, in full > awareness of the risks, wager quantity for quality. There is some group whose name I > cant remember who have made it their mission in life to attack drugs with the > ultimate goal of having them banned. Though their intentions are good, bless > their hearts, they have succeeded in getting many beneficial and in some cases > life saving drugs pulled from the market. Not only do so many loose that tool > to manage their disease with it will also increase the cost of any drug that > may be developed to take it's place. The FDA has stringent rules for how a new > drug is to be tested but nothing is perfect. Document and quantify any adverse > reactions and let the consumer decide if the risk/reward ratio is acceptable. > The drug companies jump through a lot of hoops in efforts to make sure there > are no surprises with their products. But if 100 million people use a product > SOMEBODY is going to have an unusual negative reaction to it. They certainly > dont want to kill or maim their customers. I believe that people should have to > study to some extent any drug that is to be prescribed so that they full well > understand what the risks of complications are and sign a contract stating so > which protects the prescribing doctor and the maker of the drugs from billion > dollar class action law suits. On a similar note of laws designed to protect > ourselves from ourselves, I dont see why it should be anyone else's concern > who I choose to perform medical prodedures on me. I dont believe it should be a > concern of the Government nor an insurance company. I see the value in > requiring any practitioner(sp?) to keep and submit records so that anyone > contemplating using that practitioners services can review their performance first but > if I respect a veterenarian to perform minor surgery on me then why should > anyone else have right to interfere? I could accept third party involvement in > the situation of a person who is not capable of understanding such as a child, > alzheimer patient or coma victim but ah well you all know what I mean just > let me make my own decisions. > Gee I think I woke up on the wrong side of the armchair? Orin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Vioxx is off the market in Canada too. Crystal [Editor's Note: Vioxx was removed globally. Kathy F.] >From: " jerredawson " <jerredawson@...> >Reply- > >Subject: [ ] Re: first timer >Date: Sat, 13 Nov 2004 01:11:26 -0000 > > > >Orin, I totally agree with you. I feel that in this day and age so many >people abrogate >personal responsiblity that it makes it difficult for the rest of us to be >allowed to make >informed decisions. I have discussed viox with my md and there have been >cases where it >was prescribed to patients with risk factors for heart problems and if you >factor out those >cases the results change dramatically. > >It is the same with enbrel. Most statistics ignore the fact that having an >immune system >disease increases the chance of lymphoma anyway and that should be factored >into any >decsion made about its use. Perhaps a run to Canada for vioxx? or has it >been withdrawn >from the market there? > >And now there are questions about bextra because it can cause heart >problems when used >intrevenously sp? during heart surgery? Why should that make it impossible >for the rest of >us to use it if we choose? > >jerre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Dear Tammy, Welcome to the group! Sorry your pain has driven you here, though. I think waiting for a diagnosis and finding caring doctors is the hardest part. I waited 2 years for a diagnosis, then it just HAD to be something weird nobody had heard of before (Dercum's Disease.) It will come, though, and you will get relief, just have faith and I'll keep you in my prayers. This is a good, compassionate group with lots of good advice. Peace, Judi in IN 59 yo wife and grandmother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 > Dear Tammy, > > Welcome to the group! Sorry your pain has driven you here, though. I > think waiting for a diagnosis and finding caring doctors is the hardest > part. I waited 2 years for a diagnosis, then it just HAD to be > something weird nobody had heard of before (Dercum's Disease.) It will > come, though, and you will get relief, just have faith and I'll keep > you in my prayers. This is a good, compassionate group with lots of > good advice. > > Peace, > Judi in IN > 59 yo wife and grandmother Thank-You Judi for your'e sweet note. I just got a call from the Dr.s office saying it could be Lupus.Not good news but my faith is strong and I know GOD is with me.They are going to try new meds.this evening.I can see this is a very good group.I don't know anyone personaly that has this so I am vry gratefull for this site.All of you are in my prayers. -Tammy- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2005 Report Share Posted September 13, 2005 Tammy, Welcome to the group. I hope you get to feeling better soon. You will learn a lot from everyone here. Hopefully you will get a dx soon. As soon as you can get some medications started the better you will feel. Beth(AR) --- clarabell4ever2000 <clarabell4ever2000@...> wrote: > Good Morning All! This is my first time here.I am a > 42 year old FM. I > have not officialy been diagnosed with RA but will > be going to a > specialist next week.Just about everything elese has > been ruled out so > this is the next step.I have had " spells " for about > a year now.With > each one being more intense and lasting longer.Just > thinking it was > reg.arthritis I would take Aleve and get better.Then > about 2 months ago > it hit and will NOT go away.The Dr.I WAS going to > said it was JUST > arthritis and that NOTHING was wrong with me.I am > not a complainer and > when I say I hurt it is bad.Each day is getting > harder and harder to > move with out pain.I am stuck in the bed most of the > time because the > more I move the more it hurts and swells.The parts > that are affected > are my > neck,shoulders,elbows,wrists,hands,knees,ankles and > feet.I am > currently taking Darvocet and Percoet(not > together)for pain and > Zanaflex at night (musscle relaxer).I take > Effexor(anti depressant)to > relieve my menapause symtems(ovaries removed at age > of 27)and NASAID's > causes stoumach bleeding.Sorry for the long message > but this first time > and I had alot to say.Any suggestions will be > GREATLY > appreciated.THANKS!-Tammy- > > > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2005 Report Share Posted September 13, 2005 Thank-You Beth! I have already learned alot.I am soooo glad I found this group!!!-Tammy- > > > Good Morning All! This is my first time here.I am a > > 42 year old FM. I > > have not officialy been diagnosed with RA but will > > be going to a > > specialist next week.Just about everything elese has > > been ruled out so > > this is the next step.I have had " spells " for about > > a year now.With > > each one being more intense and lasting longer.Just > > thinking it was > > reg.arthritis I would take Aleve and get better.Then > > about 2 months ago > > it hit and will NOT go away.The Dr.I WAS going to > > said it was JUST > > arthritis and that NOTHING was wrong with me.I am > > not a complainer and > > when I say I hurt it is bad.Each day is getting > > harder and harder to > > move with out pain.I am stuck in the bed most of the > > time because the > > more I move the more it hurts and swells.The parts > > that are affected > > are my > > neck,shoulders,elbows,wrists,hands,knees,ankles and > > feet.I am > > currently taking Darvocet and Percoet(not > > together)for pain and > > Zanaflex at night (musscle relaxer).I take > > Effexor(anti depressant)to > > relieve my menapause symtems(ovaries removed at age > > of 27)and NASAID's > > causes stoumach bleeding.Sorry for the long message > > but this first time > > and I had alot to say.Any suggestions will be > > GREATLY > > appreciated.THANKS!-Tammy- > > > > > > > > > > > > > > > __________________________________ > - PC Magazine Editors' Choice 2005 > http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Hello, first time signing on and posting here. My five year old son was diagnosed with PDD-NOS at age three. Researching and Dr. Goldberg's approach truly seems as an answer to my prayers. How do I contact a clinic or doctor near me in South Texas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Cheryl, thank you so much. I contacted Dr. G's office today requesting an intake package. I was surprised to hear from the secretary that Dr. G is not affiliated with other doctors promoting the protocol. My son is three months into The Thoughtful House Center in Austin, TX " leaky gut " protocol under Dr. Jepson, and two days into Difuclan brought about the tasmanian devil. Thanks, again. > > > Hello, first time signing on and posting here. My five year old son > > was diagnosed with PDD-NOS at age three. Researching and Dr. > > Goldberg's approach truly seems as an answer to my prayers. How do I > > contact a clinic or doctor near me in South Texas? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Sad to say, the Taz effect is actually a good thing when introducing diflucan. Hang in there! You should probably see some very good things once the die-off is done. Kristy Re: First timer Cheryl, thank you so much. I contacted Dr. G's office today requesting an intake package. I was surprised to hear from the secretary that Dr. G is not affiliated with other doctors promoting the protocol. My son is three months into The Thoughtful House Center in Austin, TX " leaky gut " protocol under Dr. Jepson, and two days into Difuclan brought about the tasmanian devil. Thanks, again. > > > Hello, first time signing on and posting here. My five year old son > > was diagnosed with PDD-NOS at age three. Researching and Dr. > > Goldberg's approach truly seems as an answer to my prayers. How do I > > contact a clinic or doctor near me in South Texas? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2010 Report Share Posted June 9, 2010 First, let me say there is hope and don't give up on your son or listen to mainstream doctors that tell you this is just a Neurologic disorder and that there isn't anything that can be done. My son was diagnosed about a 1 1/2 ago when he was 2 years 7mos. He was in his own world, didn't have any eye contact and never played with any of his toys except a musical toy and played it repetitively. I spent hours upon hours reading everything I could about Autism as I was like you and your wife and new nothing of Autism and this was our 1st child. My son, - is now 4 and is still non-verbal but has come a long way in his recovery. If there is any way you can get him into an ABA Program that is going to be very beneficial for him long term. My son entered a private school that was ABA Based and it is wonderful. About 2 weeks after his diagnosis on a Saturday I went cold turkey with the Gluten/Casein Free Diet. It was an extremely difficult thing to do as my son was beside himself on the 1st and 2nd day but began eating his new food the 3rd day and by the end of the first week on the diet he started looking at us and over time seemed to become a little more aware of his environment and has awesome eye contact. If you are going to do this diet it is a long process and I would suggest finding a nutritionist who knows about this diet and Autism. We were on the diet for about 6 months before I found " Thoughtful House " in Austin, TX and initially went to them for the nutritionist and have stayed and working with a Dan Doctor. I highly recommend them. It's been a year since we've been with Thoughtful House and have been on supplementation and have recently started Chelation. Remember every child is different and unique with what's going on with their little bodies. I would do a lot of reading. There are good articles you can find on the Autism Reasearch Institute website as well as Generation Rescue. Also, try to think of this as a marathon not a sprint. I think back a year and a half ago and can see such progress we have made and know we still have a long ways to go but our children can get better. I hope this helps and wish you and your family all the best. Maureen ________________________________ From: apathy221 <apathy772@...> Sent: Wed, June 9, 2010 2:12:22 PM Subject: [ ] First Timer  My son Gerald is 2 years old he doesnt walk. He is non-verbal. He doesnt point at things or recognize me or my wife as his parents. I have suspected some type of PPD or Autism for just a few days. Im just discovering the diets chelation and many other Biomedical Interventions that can be done. Untill I saw the videos on Generation Rescues website I thought there was no hope. He is my wife and I's only child and untill recently we were worried about having to put him in a home. In the videos one of the dads said whos going to take care of him when I die and I burst. Im not normally an emotional man but this is killing me. What do I do. Where do I start. We are seeing a neurologist, opthamologist, geneticist. We have gotten several MRI's and are scheduled for anohter one soon. We told the Neurologist today that we want all the blood urine and immunology tests done to check for heavy metal poisoning. We also asked to be refered to an allergist and a nutrionalist to talk about the diets and chelation. When we mentioned a D.A.N. doctor the neurologist's face changed he immediatly ordered a bunch of tests and asked us if we had appts. to see this doctor and made sure bluntly to tell us it would come out of our pockets. It seemed strange to me like he was scared we could fix our son then these 10's of thousands of dollar tests he runs wouldnt be guranteed anymore. I dont know but it seems to me that these doctors dont actually care about the children thats like saying a mechanic cares about the car hes repairing they just want the insurance companies money and the longer they keep paying the longer they will withold any true diagnosis. Im sorry if I seem to ramble or I dont use the best grammar & punctuation Im trying. My son is two years and 4 months old hes had the same symptoms for over a year. He fixates on toys, doesnt point, no eye contact, (he also has nystagmus so we thought that was why he had no eye contact) he doesnt recognize us, our voices, our faces, doesnt talk, walk, crawl, situp o! n his ow n, and untill recently we honestly felt hopeless. It took me telling the Doctors today, Hey maybe my son has a pdd for them to order an evaluation. I also said hey maybe this pdd is being caused by a heavy metal toxicicty or an allergy then they ordered the test's needed to find out. Why is it me a layman who has never even seen a child before in my life with autism or PDD has to diagnose his own child. These doctors and specialists see these children on a daily basis they know the signs what to look for and none of them untill I brought it up suggested it. I love my son. Im scared for my son. I want to know my son will be ok after I die. Can anyone give me some hope? 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Guest guest Posted June 9, 2010 Report Share Posted June 9, 2010 We're in almost the exact same boat, my 2 year old was just diagnosed after I kept on looking and developed strong suspicions of autism. Pediatricians, with decades of experience were clueless. The first thing to realize is that there is hope. A lot of kids, through the efforts of their amazing parents, have been recovered. But I don't think you'll ever find a case of a kid recovering just through the treatment prescribed by a doctor, even if he/she is a DAN or supposed expert. It's a complicated, nefarious condition that is different for each child. Many of the parents who have recovered their children educated themselves and are incredibly knowledgeable about their individual child's biology. Stay strong, but yea, that first realization of the nature of your son's condition is absolutely crushing and reduces grow men to tears. For inspiration check out Stan Kurtz's videos, where you can see his son Ethan progress from completely unresponsive to a happy, social boy doing karate with other kids. Thankfully there are tons of stories that are similar. Some suggestions: 1. Join the Recovery From Autism group which is focused on treating children 2. Familiarize yourself with Cutler chelation (the process of removing heavy metals from a person's body and brain), either by buying his books or Googling. It has been instrumental in recovering a lot of kids. 3. Look into the hair elements test that the Cutler protocol recommends (again Google is your friend). It will confirm for you if mercury toxicity is a problem for your son. 4. Look into DAN/biomed treatments, but please know that there is a difference between how many DAN doctors do chelation and what the Cutler protocol recommends. I personally believe the Cutler protocol is safer and more effective. Some people make an analogy that this is a marathon and not a sprint - I hate that analogy, it captures none of the emotions of what we're going through. To me it's war... unfortunately a long, protracted war of attrition, but it is winnable with enough resolve and knowledge. Finally, there's a quote that has helped me along, " Pray, because everything is in God's hands, but work as if it were all up to you " . best wishes, apathy221 wrote: > > My son Gerald is 2 years old he doesnt walk. He is non-verbal. He > doesnt point at things or recognize me or my wife as his parents. I > have suspected some type of PPD or Autism for just a few days. Im just > discovering the diets chelation and many other Biomedical > Interventions that can be done. Untill I saw the videos on Generation > Rescues website I thought there was no hope. He is my wife and I's > only child and untill recently we were worried about having to put him > in a home. In the videos one of the dads said whos going to take care > of him when I die and I burst. Im not normally an emotional man but > this is killing me. What do I do. Where do I start. We are seeing a > neurologist, opthamologist, geneticist. We have gotten several MRI's > and are scheduled for anohter one soon. We told the Neurologist today > that we want all the blood urine and immunology tests done to check > for heavy metal poisoning. We also asked to be refered to an allergist > and a nutrionalist to talk about the diets and chelation. When we > mentioned a D.A.N. doctor the neurologist's face changed he immediatly > ordered a bunch of tests and asked us if we had appts. to see this > doctor and made sure bluntly to tell us it would come out of our > pockets. It seemed strange to me like he was scared we could fix our > son then these 10's of thousands of dollar tests he runs wouldnt be > guranteed anymore. I dont know but it seems to me that these doctors > dont actually care about the children thats like saying a mechanic > cares about the car hes repairing they just want the insurance > companies money and the longer they keep paying the longer they will > withold any true diagnosis. Im sorry if I seem to ramble or I dont use > the best grammar & punctuation Im trying. My son is two years and 4 > months old hes had the same symptoms for over a year. He fixates on > toys, doesnt point, no eye contact, (he also has nystagmus so we > thought that was why he had no eye contact) he doesnt recognize us, > our voices, our faces, doesnt talk, walk, crawl, situp on his own, and > untill recently we honestly felt hopeless. It took me telling the > Doctors today, Hey maybe my son has a pdd for them to order an > evaluation. I also said hey maybe this pdd is being caused by a heavy > metal toxicicty or an allergy then they ordered the test's needed to > find out. Why is it me a layman who has never even seen a child before > in my life with autism or PDD has to diagnose his own child. These > doctors and specialists see these children on a daily basis they know > the signs what to look for and none of them untill I brought it up > suggested it. I love my son. Im scared for my son. I want to know my > son will be ok after I die. Can anyone give me some hope? > > Quote Link to comment Share on other sites More sharing options...
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