MaryOld

Non-Member Package Book & PNA Membership ๛.00 PNA Members ื.95 I imagine that Amazon.com will have this soon, as well. ~~~~~~~~~~~ Great News! The 3rd Edition Pituitary Patient Resource Guide is finally here! Visit http://www.pituitary.org/RG3....ion.htm to find out more about this exciting new edition and to order your copy today. For those who are unfamiliar with the first two editions of the Resource Guide, you will find this book a very welcome relief in your struggle for greater understanding of your own condition, as well as the options and treatments open to you. There is simply no such gathering of information for pituitary patients anywhere else in the world, in any form. This book is packed with articles (63) on a wide range of issues faced by pituitary patients, as well as listings of hospitals, medical centers, and physicians that specialize in the treatment of pituitary disorders and additional resources and organizations around the world, and on the Internet. 100 pages larger than the 2nd edition, and for the first time in this edition, we have included a huge new section, the Pituitary Patient Tool Kit. IN THIS EDITION YOU WILL FIND: 63 Disorder & Treatment Articles Physician Listings Hospital Listings Pharmaceutical Treatment Information Patient Tool Kit Patient Experiences Additional resources like Internet links and other helpful organizations. This new 3rd edition is made up of the following sections: Introduction To Pituitary Disorders Acromegaly Adult Growth Hormone (GH) Deficiency Craniopharyngioma Cushing's Syndrome Empty Sella Syndrome Endocrine-Inactive (i.e., Non-Functional Tumors) FSH & LH Tumors Hypogonadism Hypopituitarism Prolactinoma Rathke's Cleft Cyst Thyroid Hormone Deficiency (Hypothyroidism) TSH (Thyroid Stimulating Hormone) Secreting Tumor Pituitary Disorders In Depth Disorders Associated With Pituitary Disease Pituitary Disorder In Children Psychosocial Aspects Of Pituitary Disease Sexual & Reproductive Aspects Of Pituitary Disease Testing Medical Treatment Surgical Treatment Hormone Replacement Therapy Radiation Treatment Long Term Outcome Patient Stories Physician & Hospital Referral Listings Additional Help & Resources Glossary Of Pituitary Related Terms Pituitary Patient Tool Kit Mitchell Knutzen Pituitary Network Association

Non-Member Package Book & PNA Membership ๛.00 PNA Members ื.95 I imagine that Amazon.com will have this soon, as well. ~~~~~~~~~~~ Great News! The 3rd Edition Pituitary Patient Resource Guide is finally here! Visit http://www.pituitary.org/RG3....ion.htm to find out more about this exciting new edition and to order your copy today. For those who are unfamiliar with the first two editions of the Resource Guide, you will find this book a very welcome relief in your struggle for greater understanding of your own condition, as well as the options and treatments open to you. There is simply no such gathering of information for pituitary patients anywhere else in the world, in any form. This book is packed with articles (63) on a wide range of issues faced by pituitary patients, as well as listings of hospitals, medical centers, and physicians that specialize in the treatment of pituitary disorders and additional resources and organizations around the world, and on the Internet. 100 pages larger than the 2nd edition, and for the first time in this edition, we have included a huge new section, the Pituitary Patient Tool Kit. IN THIS EDITION YOU WILL FIND: 63 Disorder & Treatment Articles Physician Listings Hospital Listings Pharmaceutical Treatment Information Patient Tool Kit Patient Experiences Additional resources like Internet links and other helpful organizations. This new 3rd edition is made up of the following sections: Introduction To Pituitary Disorders Acromegaly Adult Growth Hormone (GH) Deficiency Craniopharyngioma Cushing's Syndrome Empty Sella Syndrome Endocrine-Inactive (i.e., Non-Functional Tumors) FSH & LH Tumors Hypogonadism Hypopituitarism Prolactinoma Rathke's Cleft Cyst Thyroid Hormone Deficiency (Hypothyroidism) TSH (Thyroid Stimulating Hormone) Secreting Tumor Pituitary Disorders In Depth Disorders Associated With Pituitary Disease Pituitary Disorder In Children Psychosocial Aspects Of Pituitary Disease Sexual & Reproductive Aspects Of Pituitary Disease Testing Medical Treatment Surgical Treatment Hormone Replacement Therapy Radiation Treatment Long Term Outcome Patient Stories Physician & Hospital Referral Listings Additional Help & Resources Glossary Of Pituitary Related Terms Pituitary Patient Tool Kit Mitchell Knutzen Pituitary Network Association

Pictures, Sue sent pictures Sue, Christina and Cookie Amanda and her mother, Gail Amanda, posing Amanda Sue, Gail, Christina, Leslie, Cookie and Amanda Thanks!

#Moderation Mode Moved here

Oh, right, I'd forgottten about the Webring. Major DUH here. If anyone else wants to join that, go to http://www.cushings-help.com/site_ring.htm to get directions on how to sign up in that. Thanks, everyone for your URL's. I'll try to get those added later today

I'm going through all the posts that I've missed while I was on vacation, moving them around and so on. I've been noticing that some of you (Kiri, Kai, Miriam, others???) have websites or webpages up about your experiences with Cushing's. If you'd post the URL here, I'll be happy to add it to the http://www.cushings-help.com/links.htm page That way, I'll be sure to find it easier, if they're all here, in this post. Thanks

Sounds like a wonderful idea, Sue. If you'd like to sign my name to the bottom you can - Mary Kelly O'Connor

Thanks, Sandy Do you have the URL for that, too? I'm trying to see that those are added to newsitems...and the coyright information from the bottom. Thanks, again

From New"]http://www.pslgroup.com/dg/202b5a.htm&l...gt;New Diabetes Threat Identified[/b] SLOUGH, ENGLAND -- August 6, 2001 -- An Expert Committee of the International Diabetes Federation, comprising representatives from 12 countries, met this weekend to consider the importance of a common -- but seldom diagnosed -- condition that carries a very high risk of type 2 diabetes and heart disease. Impaired glucose tolerance (IGT), which reveals itself as an excessive rise in blood glucose following consumption of 75g glucose, affects about one in seven of adults over 40 years in the industrialised world. Professor Paul Zimmet AO, Co-Chairman of the expert group, and from the International Diabetes Institute, a World Health Organisation Collaborating Centre in Melbourne, Australia, said that there are over 200 million people worldwide with IGT. About 50 percent of adults with IGT will develop type 2 diabetes within 10 years. Professor Sir George Alberti, President of the International Diabetes Federation and Royal College of Physicians, and Co-Chairman of the expert group warned, "Type 2 diabetes already affects 150 million people worldwide and most people with these damagingly high "glucose spikes" will go on to develop diabetes. Diabetes is already placing a heavy burden on healthcare resources and the number of people at risk has huge implications for healthcare budgets". In addition to a high risk of type 2 diabetes, IGT significantly increases the risk of cardiovascular diseases such as heart disease and stroke. Recent research shows that people with IGT are 34 percent more likely to die from cardiovascular diseases over the next nine years than people with normal blood glucose levels. Furthermore, many people who go on to develop type 2 diabetes already have cardiovascular complications by the time they are diagnosed. "We now have clear evidence that weight control and adequate physical activity substantially reduce the risk of developing diabetes and cardiovascular disease. A study recently completed in Finland showed that intensive lifestyle advice reduced progression from IGT to type 2 diabetes by 58 percent," says Professor Paul Zimmet. "However, it is equally clear that many people do not respond to lifestyle advice. The serious health risks associated with IGT mean that pharmacological interventions are likely to be necessary". Studies are underway to determine how effective pharmacological interventions are at reducing progression from IGT to type 2 diabetes and cardiovascular disease. The Diabetes Prevention Program, funded by the US National Institutes of Health, looking at the effect of lifestyle or pharmacological intervention on the development of diabetes in people with IGT, is due to present its preliminary findings in a few weeks. The results of the Bayer AG STOP-NIDDM study will also be available in a few weeks. Later this year, Novartis Pharma AG will launch the very large and important NAVIGATOR prevention trial involving 7,500 people with IGT in 30 countries worldwide. This study will also address the issue of whether pharmacological intervention can prevent type 2 diabetes and/or cardiovascular disease. Another study asking a similar question will be the DREAM study funded by Aventis and GSK. "Diabetes and cardiovascular diseases will be the biggest health problems faced by governments for many years to come," says Professor Zimmet. "It is essential that we take action now to prevent these diseases from escalating further". SOURCE International Diabetes Federation

Updated... Some helpful hints: Make yourself an expert by reading everything you can get your hands on here on the boards and on the website at http://www.cushings-help.com ?There is a page of links which will take you to even more information at Find"]http://www.cushings-help.com/links.htm Find all the support you can get, check in with the board as often as you can. ?Often you'll find something helpful. Keep a journal of your symptoms or print out the checklist at http://www.cushings-help.com/checklist.htm ?Keep your symptom list in a notebook along with:Records of your medical history. Pictures, before you started getting sick and a progression, if you can. Questions for your doctor visits and make notes of the answers. Copies of any lab tests or scans you have done and their results. [*]Take your notebook and someone with you when you visit your doctor. If you cannot take a friend or relative, take a tape player, so you're sure to have all the information for later. ?None of us can remember eveything that is said during an appointment. [*]Make a list of questions you would like to cover with the doctor. (It's best to start this list a week or so before your appointment....not an hour before). Include questions that will give you some idea of your doctor's point of view on certain issues. You may find that his/her viewpoint is not compatible with yours. Ask your doctor what kinds of tests s/he will run and be sure to find out before hand what kind of preparation you'll need to do.Do you need to fast? Must the dexamethosone, of other medication, be taken at a certain time. Does the urine container have preservative? ?If so, what is it? Will any of the meds you are taking interfere with the testing? [*]When you make your next appointment, let them know that you would like to have a little extra time to discuss some issues with your doctor. They can arrange the schedule a lot easier when they know ahead of time. [*]Also have a list of any changes you've noticed since your last visit. This should be a fairly detailed explanation so the doctor can determine the extent of your problems. Complaining about symptoms in general is not the same as saying what they are, how long you've had them, showing pictures of changes over time. [*]Be prepared to make the decision to find a new doctor if you come away from your appointment with an unsatisfied feeling. When you have done your homework on your family history, current treatment trends and your own knowledge about your body, there is no reason to continue seeing a doctor who will not discuss options with you or at least make you feel that they are doing everything possible to make you more comfortable. [*]Read all you can before testing to be sure that the tests are run correctly [*]If your endo says that everything is "normal" and there is nothing else for you to do, make sure you remind him that there is also cyclical (episodic, intermittent) Cushing's, and often it isn't "caught" in the first series of testing. ? [*]If your doctor refuses to fun more tests or says that there is "nothing more to do", get another doctor. ?You can check the Compilation of Helpful Doctors List to help find someone in your area. [*]Ask your doctor these questions, adapted from The Barbara Ann Karmanos Cancer's Institute to be relevant for Cushing's Patients. ?Thanks to Cris, for finding the original article! 10 Questions Every Cushing's Patient Should Ask His or Her Physician 1. What specific type of Cushing's do I have? What stage? What does that mean? 2. What are all my treatment options? 3. Are there any clinical research studies underway for my Cushing's? What are the studies investigating? On what research are these based? What "phase" studies are they and what do you hope to accomplish? 4. Are all the medical personnel, endocrinologists, neurologists and Cushing's-specific surgeons on staff at this hospital/center certified by national boards in their specialty of Cushing's? 5. What is your specialty? What treatment alternatives would your colleagues in other specialties recommend? How many patients like me do you see a year? What kinds of complications are you seeing? 6. Can I have my case reviewed by a multidisciplinary team (that is, a team of Cushing's experts from different areas who will jointly review my case)? 7. What services are available for me and my family beyond treatment? (Such as patient educational programs, support groups, complementary therapies, and counseling.) 8. How long will I have to be treated? Will I be able to work during my treatment? 9. What are the success rates of the treatment for my type of Cushing's and what are/how common are the side effects (such as fatigue or pain) and complications for the treatment(s) you recommend? Are there medicinal or other ways to overcome these side effects or complications? 10. What can I expect for quality of life for the short term and long term? What should I be doing for my family/loved ones? [*]Participate in the Buddy Program. ?If you haven't signed up, you can do so here: www.oconnormusic.org/cushings-form.htm [*]Miriam says: ? Stay positive, and make sure you look after yourself properly. Learn to be selfish, so you don't aggravate the problem by doing too much. Respond to your body, not what other people tell you to do. [*]Adrienne says: Cushies should feel free to apply for temporary disabled parking permits / placards.

Works for me, Dot You might want to try purging (not as related to food!) and all that other good stuff. It's important to do this regularly. If you don't remember... PURGING YOUR CACHE Before reading, you may want to click on "Email to a friend" and E.mail yourself a copy of this for future reference. It is also recommended that you click on "Printable Version" and print out a copy of these instructions to have handy while purging your cache. Today everyone surfs the Web. When you use the Internet on a regular basis, it is essential that you "purge your cache." The cache is composed of files that build up on your computer every time you open a Web page. Opening the page downloads into your computer everything that's ON that page including text, javascript, sound files, images, etc. Needless to say, when you're surfing from page to page, many thousands of files can build up a "cache" on your computer. Unless you purge (clean) them out of your machine, it will slow you down your Internet experience. If you've never purged your cache before, but have surfed the Internet, you will be amazed at how many files have been stored on your machine. These files are "dumped" into your "C:WindowsTemporary Internet Files" directory. AOL MEMBERS: In AOL 5.0, go to the "My AOL" icon on the top of the AOL screen. -- Click on PREFERENCES -- Click on the" WWW" icon The rest is the same for AOL and Non-AOL members using Internet Explorer: If you're using Internet Explorer from your Windows desktop or going in through AOL's instructions above: --Click on TOOLS and INTERNET OPTIONS. It should default to the screen with the GENERAL Tab window open. In the middle of the Window, you will see, TEMPORARY INTERNET FILES. 1) Click on DELETE FILES and when the next window opens, click on OK 2) Do the same thing on that same Window for the HISTORY area. --Click on CLEAR HISTORY and then click on Ok when it asks if you want to delete all your history files. That's called purging your cache. It will prevent pages in your memory from loading and will also allow you to suft the Internet faster when the cache is cleaned up. This is a diagnostic you should do at least once a day if you do a lot of Web surfing. --------------------------------------- TO PURGE YOUR CACHE IN NETSCAPE BROWSER: IN NETSCAPE: click on EDIT and PREFERENCES. Scroll to ADVANCED and double-click on it. Highlight CACHE On the right side of the screen, you'll see two buttons. 1) Clear Memory Cache 2) Clear Disk Cache -- Click on each one and you'll get a message about clearing the cache. -- Click "OK" and that will purge your cache in Netscape. ----------------------------------------- If you followed the instructions, it should have removed the bulk of files downloaded from the Internet every time you visit a page. There may be files remaining, namely "cookies" which you can remove in Windows Explorer. To get to Windows Explorer: -- Right click on the "Start" button on the task bar. -- Click on "Explorer" -- Scroll down to the "C:WindowsTemporary Internet Files" directory -- Highlight all those files and delete them. Do the same in: C:WindowsCookies You can do that by clicking on the top file in the list, choosing EDIT from the menu at the top, then choose SELECT ALL, and click on FILE and DELETE. Be sure you're only deleting files in the TEMPORARY INTERNET FILES directory/folder. -------------------------------------------- If you want to read more about cookies, visit http://www.cookiecentral.com Of course, the site could have been busy....

An important reminder...this is from the website disclaimer Although every effort is made to see that there are no inaccuracies in information provided by Cushings-Help.com, the data and opinions appearing in the articles and guest transcripts are the responsibility of the contributor. Cushings-Help.com accepts no liability for the consequences of any such inaccurate or misleading data, opinion or statement. The opinions and views expressed on these pages do not necessarily reflect those of Cushings-Help.com, but of Mary Kelly O'Connor and the other individuals who publish them. The goal of this site is to provide support and information for Cushing's patients, family and other concerned persons. The information provided by Cushings-Help.com is not intended, nor should it be construed, as a substitute for professional medical advice.?? ? This site receives no support or payment of any kind from any company or individual other than the site owner.? Some of these documents contain copyrighted material whose use has not been specifically authorized by the copyright owners. We believe that this not-for-profit use on the Web constitutes a "Fair use" of the the materials as provided in section 107 of the US copyright law. If you wish to use this copyrighted material for purposes of your own that go beyond "fair use", you must obtain permission from the copyright owner. Cushings-Help.com does not engage in the practice of medicine. It is not a medical authority, nor does it claim to have medical knowledge.?? Always consult your personal physician or other health care professional before beginning or altering any course of treatment or medication.

#Moderation Mode Moving to NewsItems Moved here

I have no idea what length, if any, is the maximum for these boards. If it's too long, you could send it to me and I could post it on the website, possibly split up into several pages.

Several articles are also posted here, on the old boards. ?They still might have some value :wink:

I just subscribed (free) but the article is ฟ. If you think it's worthwhile, I'll get a copy.

#Moderation Mode Hi and welcome to the boards Your post sounds a bit more like an introduction than a question about how the boards work, so I'm going to move it up to the Introduce yourself board. You can find it by clicking the blue "here" below Again, welcome - you'll find lots of help and support here! Moved here

#Moderation Mode I got it, Jean Ann! Thanks so much I'm also moving this topic down to the News Items and Research Board Moved here

Thanks, Jean Ann. (703) 378-8517

Bernadette, we have a board for posts that can go into the book, or updates on how the book is coming. ?The one on the old board is Cushing's Book Info. The place here on the new boards can be found by clicking here.

Jean Ann, if you'd like, you could send it to me and I'll post it for everyone to read. Is it online or in hard copy?

Click here for the archived News Items and Research Board

Some helpful hints: Make yourself an expert by reading everything you can get your hands on here on the boards and on the website at http://www.cushings-help.com ?There is a page of links which will take you to even more information at Find"]http://www.cushings-help.com/links.htm Find all the support you can get, check in with the board as often as you can. ?Often you'll find something helpful. Keep a journal of your symptoms or print out the checklist at http://www.cushings-help.com/checklist.htm ?Keep your symptom list in a notebook along with:Records of your medical history. Pictures, before you started getting sick and a progression, if you can. Questions for your doctor visits and make notes of the answers. Copies of any lab tests or scans you have done and their results. [*]Take your notebook and someone with you when you visit your doctor. If you cannot take a friend or relative, take a tape player, so you're sure to have all the information for later. ?None of us can remember eveything that is said during an appointment. Ask your doctor what kinds of tests s/he will run and be sure to find out before hand what kind of preparation you'll need to do.Do you need to fast? Must the dexamethosone, of other medication, be taken at a certain time. Does the urine container have preservative? ?If so, what is it? Will any of the meds you are taking interfere with the testing? [*]Read all you can before testing to be sure that the tests are run correctly [*]If your endo says that everything is "normal" and there is nothing else for you to do, make sure you remind him that there is also cyclical (episodic, intermittent) Cushing's, and often it isn't "caught" in the first series of testing. ? [*]If your doctor refuses to fun more tests or says that there is "nothing more to do", get another doctor. ?You can check the Compilation of Helpful Doctors List to help find someone in your area. [*]Ask your doctor these questions, adapted from The Barbara Ann Karmanos Cancer's Institute http://www.clickondetroit.com/det....54.html to be relevant for Cushing's Patients. ?Thanks to Cris, for finding the original article! 10 Questions Every Cushing's Patient Should Ask His or Her Physician 1. What specific type of Cushing's do I have? What stage? What does that mean? 2. What are all my treatment options? 3. Are there any clinical research studies underway for my Cushing's? What are the studies investigating? On what research are these based? What "phase" studies are they and what do you hope to accomplish? 4. Are all the medical personnel, endocrinologists, neurologists and Cushing's-specific surgeons on staff at this hospital/center certified by national boards in their specialty of Cushing's? 5. What is your specialty? What treatment alternatives would your colleagues in other specialties recommend? How many patients like me do you see a year? What kinds of complications are you seeing? 6. Can I have my case reviewed by a multidisciplinary team (that is, a team of Cushing's experts from different areas who will jointly review my case)? 7. What services are available for me and my family beyond treatment? (Such as patient educational programs, support groups, complementary therapies, and counseling.) 8. How long will I have to be treated? Will I be able to work during my treatment? 9. What are the success rates of the treatment for my type of Cushing's and what are/how common are the side effects (such as fatigue or pain) and complications for the treatment(s) you recommend? Are there medicinal or other ways to overcome these side effects or complications? 10. What can I expect for quality of life for the short term and long term? What should I be doing for my family/loved ones? [*]Participate in the Buddy Program. ?If you haven't signed up, you can do so here: www.oconnormusic.org/cushings-form.htm [*]Miriam says: ? Stay positive, and make sure you look after yourself properly. Learn to be selfish, so you don't aggravate the problem by doing too much. Respond to your body, not what other people tell you to do. [*]Adrienne says: Cushies should feel free to apply for temporary disabled parking permits / placards.