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Everything posted by justashell

  1. Quote: "High-quality articles were selected for their translational impact, scientific advances, enrichment of new knowledge, influence on how we understand pituitary disorders, transformation of therapeutic principles, and opening up new research vistas. Using these selection criteria, highlighted papers within the following categorical topics were further selected for analysis and review: advances in understanding subcellular mechanisms subserving the pathogenesis of pituitary disorders including pituitary tumors and pituitary failure; new challenges facing the physician treating patients harboring prolactinomas with dopamine agonists; and the appearance of new publications reporting the efficacy of long-term prospective medical treatment of acromegaly that now provide more rigorous patient outcome information." Sounds like they're coordinating, cooperating and focusing on good stuff!
  2. I like it. Especially the "ugly"...I remember when I was first reading up on it---and tried to tell others what I'd learned---I heard it called the "ugly disease" and "old horse" disease. I felt like an ugly, old horse back then.
  3. You know what they say Gummie: "It's not what you know---but who you know." WAY TO GO!!!!
  4. Wow...crazy critters!!! On the pain thing---my sister suffers from Fibromyalgia---and wouldn't it be wonderful if there was something that could alleviate some of the pain without the heavy pain killers. Before she was correctly diagnosed, she and her doctors tried everything including oxycontin for the unbearable pain.
  5. My fear is that instead of correcting the problem---recognizing the need for increased cortisol---some dumb doctors will attempt to "fix" the problem by trying to discontinue the GH. I also agree that maybe this will alert doctors to something that needs attention: learning to treat "rare"patients correctly. I'm not sure that the local ER would know what to do with me if something like this happened. The closest REAL hospital is 330 miles away. (This is my humble opinion based on the attitude and action I've received in times past).
  6. I think the field of medicine needs to have a complete overhaul. They got in bed with the insurance companies---and now it sounds like he's bummed out that insurance is becoming such a demanding "girlfriend". The insurance companies seem to be honest at least: They're in it for the money. And it seems to me that they will do anything they can to keep more money in their pockets. I think big insurance whispered what big medicine wanted to hear: together we can make a ton of money!!! I think there is more wrong with modern medicine than Electronic Medical Records. Wait until the insurance companies have a full history of you---and then deny you coverage 'cause you're too much of a liability!!!
  7. When I was young, I had two instances where I suffered from uncontrollable diarrhea and vomiting. Both times I ended up in the hospital---in the "isolation ward", where I was given iv's to counter the loss of fluids. I'm convinced that I suffered from some sort of adrenal insufficiency---although there is no way I can prove it. I was extremely thin compared to other kids my age, I craved salt, and had episodes of severe muscle cramping in my legs. I also "tanned" easily. I couldn't ever figure out how when I got older---that I burned when I was out in the sun a lot. This had rarely happened when I was a kid. I used to think it was due to the reported hole in the ozone or because a medication I was currently taking made me more photosensitive. Just another odd piece of a puzzle. Earlier this month, my new pcp agreed that I may have suffered from "hormone" problems since I was a kid. It's great that doctors are becoming more aware of these kinds of problems.
  8. Wow...I'm so excited that Archie's Mum gave Dr. Phil what-for!!! I remember watching that show a couple of times---each time, I ached for Archie and his Mum---they got a lot of crap from people who should have kept their nose out of where it didn't belong. I'd love to hear more from Moms like this---they have gone through "it"---and they keep on plugging away.
  9. Found out what the disease was: MOMO Here's a link: http://en.wikipedia.org/wiki/MOMO_syndrome MOMO syndrome is an extremely rare genetic disorder which belongs to the overgrowth syndromes and has been diagnosed in only four cases around the world. The name is an acronym of the four primary aspects of the disorder: Macrosomia (excessive birth weight), Obesity, Macrocephaly (excessive head size) and Ocular abnormalities. It is unknown if it is a life-limiting condition. MOMO syndrome was first diagnosed in 1993 by Professor C?lia Priszkulnik Koiffmann, a Brazilian researcher in the Genetic and Clinical Studies of neurodevelopmental disorders. Signs and symptoms Along with the four aspects of the disorder that give it its name, there are also other common symptoms: * A downward slant of the forehead * Delayed bone maturation * Mental retardation The ocular abnormalities are generally retinal coloboma and nystagmus. [edit] Pathophysiology MOMO syndrome is inherited in an autosomal dominant pattern. MOMO syndrome is inherited in an autosomal dominant pattern. Because MOMO is such a rare disorder, very few studies have been conducted into its causes. Current research suggests that it is linked to a de novo (new) autosomal dominant mutation (PMID 8322820). [edit] Confirmed cases Archie Thompson was born in 2002 in Icklesham, England and weighed 8 lb 4 oz (3740 g). By 15 months his weight had increased to 4 stone (56 lb; 25 kg) and by 24 months it was up to 6 stone (84 pounds; 38 kg). The condition placed a large strain on his heart and lungs. The Thompson family were featured in a documentary for Five first shown on 3 October 2004. Danielli Furton, from S?o Paulo, Brazil, is one of the oldest surviving sufferers of MOMO syndrome. At age 17 she was featured in the Archie Thompson documentary as his mother traveled to visit her. Furton attended school as normal, though her physical and mental conditions prevented her from progressing as well as the other students. Two other cases have been diagnosed, one in Italy and a second in Brazil [1]. There has also been an uncomfirmed case in Palm Beach, Florida.
  10. Has anyone else seen "Archie: The 81 pound baby"??? He suffered from an extremely rare medical condition---his mother found one other person who suffered from the same condition---a young woman in Brazil. Archie's mum flew to Brazil to meet with the mother of this young woman---and also met with a doctor who discovered or researched this condition. I think it was a genetic thing... Anyone else watch way too much tv? Archie and his family live in Britain---but can't remember where. I also remember seeing a story many years ago, about an African baby who obviously had something seriously wrong---he was the size---height and weight of a 5 year old when he was a baby...I don't remember if they figured out what was going on or not...
  11. Interesting...there's a lot of talk about subclinical hypothyroidism...makes me wonder how the medical community figures out what to pay the most attention to: symptoms or labs or a a combination of the two and more? I guess this just emphasizes that medicine is an art and not just a hard science.
  12. Having a supportive and understanding family is helpful. If they understand that you may reach a point where you are not capable of dealing with stuff---then you can avoid a lot of unnecessary trouble. (Been there---done that). I have feelings similar to Gracie's, there are times when---I wouldn't kill myself---but I wouldn't mind if I died. I'm learning that this is just part of what ever it is that is going on in my body.
  13. Being ignored, blamed and ridiculed takes a toll on everyone. I've never liked rollercoasters---and I hate the physical/mental/emotional one I'm on right now. I'm just trying to stay seated and keep my hands inside the car. I managed to get into trouble before I got suicidal. My thoughts included plans on how to get my old doctor's attention: throwing a sledge hammer through his window. I knew that it was wrong---but I was desperate for someone to listen to me. I couldn't figure out any other way to get anyone's attention. Thankfully it didn't happen...but that's when I knew something was terribly wrong. I was able to share those thoughts with someone---and they didn't go all nutty about it. That would have been really hard to deal with. PS: that doctor still doesn't know how close he came to having broken windows.
  14. This is GREAT NEWS!!!! Thanks for sharing this with us Ami and Robin! I'm hoping that word spreads like wildfire throughout all of "doctor-land", and more people can be helped!
  15. Is it Sandy (??? I think that's the name of the lady I saw on a show)? Thanks for the heads-up!
  16. Wow!!! This is a great article!!! I'm no body-builder, but when I do any kind of "search" on gh, a lot of body-building sites and message boards come up. Thanks for taking the time to find this and share it. It's definitely an eye-opener!
  17. LOL!!!! He kind of reminds me of my kids when they were rollerblading. Seriously though...I've been thinking a lot about how the medical field/healthcare system works and doesn't work. I'd definitely check this guy out. Earlier, while on another site, I ran into this site with doctors who you can "consult" with. I think that the medical field and the health care systems are undergoing a huge change----lots of traditional doctors are fighting it---I think that's part of the problem I've run into with my local doctors---but as more people have access to more information, then things are going to change. It's inevitable. Here's that website: http://www.kasamba.com/experts/health-medicine/ I've often wished I could have consulted with a doctor, without going through the hassle of making an appointment, dealing with insurance issues, etc. PS---My mom (84) recently tried to make an appointment with dermatologist about a spot on her face---the first question they asked was what kind of insurance she had (medicare) and if she had the extra cash for the procedure that they would probably have to do. These are questions asked by the receptionists!!! My mom told them to forget it. She didn't feel like they cared too much about her or her spot...it was all about the MONEY!!! I think the more traditional US doctors---who have an enormous office, staff, etc., etc..., are going to find themselves having trouble in competing with the guys who know what they are doing and or operating the "micro" practices---where the doctor spends more time with the patient and less time dealing with checks, insurance, etc.
  18. I agree, AARRRRRGH!!! I s'pose the patient who was found to have Cushings, counted themselves as lucky---'cause it was more than "chance" that identified things. PS---If a disease is thought to be rare or hard to diagnose, does that mean that doctors are any less responsible??? Kind of reminds me of someone making excuses for themselves... Yikes!!! I was really hoping to hear that they thought that screening for Cushings was a no-brainer. Can you imagine how many people would get screened??? It would really catch a lot of "rare" diseases if you ask me...
  19. What a great story! Hopefully more doctors will be on alert---and willing to look for zebras.
  20. I hope we all go on to prove that we can beat these stinking endocrine diseases---even if most of the doctors choose to ignore us.
  21. You mean I'm not just fat and lazy??? It may not be all my fault??? Hang on, I think I'm going to faint...
  22. Thinking of you Mari---I hope you are able to get your records soon.
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