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Everything posted by sal

  1. No, obesity and Cushing's are like anything else in that they are considered disabilities. It was in my case. As long as it limits life activities and ability to work full time, then it's a disability. Pituitary dysfunction has a code on their list of impairments. It's what I used. You have to approach it like a lawsuit which is what it is and assemble your 'evidence' aka medical records accordingly. I'm not saying it's not difficult. Believe me, it is, but you can do it if you prepare appropriately and do your research first. The mistake a lot of people make, myself included, is not putting everything into it at the beginning or not hiring the best lawyer they can find. That's the true hard part. Most of them, IMO, see us as low hanging fruit and an easy $4-6,000. If I had it to do over, I would have done it myself and cut out the lawyer entirely. I'm going to try to use the new 'disease' status to get rid of the gut which I consider a second tumor. It's so cumbersome and makes it hard to do basic things like trim/paint toenails, tie shoes, reach things. It may be after the battle, but they're going to cover it. At my lowest weight, when I was skin and bones, I still had that roll. I've had it since I was 7 years old no matter what exercise I've done. It's so frustrating because it's the major impairment. It isn't just cosmetic. It causes most of the neck/back/foot pain and hygeine issues. It's stupid to go through the hell of trying to lose weight for months on end when a couple of sessions of lipo would take it away permanently. That's just practical and pragmatic. They push tummy tucks because they do get them paid for in some cases, but I don't want to take the risk and go through all that if Lipo can take care of it. That would solve my problem. I'm going to start the process asap, I'm sure it'll be an uphill battle but I'm determined.
  2. OK, they finally acknowledged it's the disease, not the cause of disease, or did they? I know they said it yesterday but how does it change things for us? Does it give us disability status and protection from discrimination? Is it a good thing or will they think of another way to use it against the victim? What do ya'll think?
  3. Well, I'd say it shouldn't be too long now before there is acknowledgement and cure, but after watching Dr. Drew and the segment on Acromegaly the other night, and the way he completely and so conspicuously avoided ANY mention of ACTH producing tumors, I don't know that there will be in our lifetime. He mentioned prolactinomas and said they were the most common, blah blah blah, talked ALLLLL around it. It couldn't have been unintentional. This is coming from high places. I guess the drug companies have more power than even we know them to.
  4. sal

    Desperate for help.

    I live east of Houston and I speak from experience when I tell you to head to California. The only doctors even remotely qualified to treat hormone disease i TX are at M.D. Anderson. I went to UTMB a few mos ago and couldn't believe, after all these years, how far into the dark ages they still are. Please, just make an appointment with Dr. Dan Kelly in Santa Monica or Dr. Theodore F.n in Beverly Hills.
  5. http://www.cedars-sinai.edu/About-Us/News/News-Releases-2011-/New-Model-Taps-Tiny-Common-Tropical-Fish-for-Large-Scale-Drug-Screening-to-Combat-Cushing-Disease.aspx
  6. I saw they added some new vids finally at her site.
  7. aaagh! That thing is irritating. I'll go delete some more.
  8. i know. So much info you don't get anywhere else. You're welcome.
  9. http://www.hormones411.org/mambo/index.php?option=com_wrapper&Itemid=144 Radiation- http://www.hormones411.org/mambo/index.php?option=com_wrapper&Itemid=210 Cohan- http://www.hormones411.org/mambo/index.php?option=com_wrapper&Itemid=223 http://www.hormones411.org/mambo/index.php?option=com_wrapper&Itemid=220 http://www.hormones411.org/mambo/index.php?option=com_wrapper&Itemid=143
  10. http://www.hormones411.org/mambo/index.php?option=com_wrapper&Itemid=211 http://www.hormones411.org/mambo/index.php?option=com_wrapper&Itemid=212
  11. I just got a reply from the coordinator with all the forms. If anybody's interested, pm me and I'll forward it to you.
  12. I know and I spoke to a doctor himself, not Burzinski, but one of his staff doctors. He's the one that gave me the info about the recurrence, radiation and chemo. I think somebody is confused along the line because most TSH and ACTH adenomas aren't cancer or don't spread if they are. I didn't know that the macro secreted. But if I'd had surgery before and was thinking of having another, I'd definitely try it. I wish the qualifications were different because I'd try it myself. He's helped a lot of people.
  13. I called his clinic and they say you pretty much have to have proof of cancer before he can treat you. I'm not sure we ever really understood each other on that though. I think if you've had a recurrence and are told to have radiation or chemo then you'd probably qualify. They don't know if it works on non-cancerous adenomas and it is doubtful the FDA would approve treatment in that case and yet it says "acth secreting adenomas" and "TSH producing adenomas". They need your history of treatment, when, who diagnosed, if it was confirmed, if you had radiation or chemo and when, and what was your reaction to it, and your before and after MRI's. It takes less than a week after they receive your info to get approved or denied by the FDA. Given all that, this would be probably be limited to those with recurrences. The way I see it, you have nothing to lose. When it's in Phase II, that means they're testing the efficacy and that it's already been shown to do no harm. You could always have another surgery later if it didn't work I guess. This stuff he uses doesn't have the awful side effects of radiation and chemo. If you want more info on Dr. Burzinski you can check out 'Cancer is Serious Business". That's an expose on the FDA and TX Medical Board's attempts to shut him down after his inventions were proven to save lives. The email and phone number are on the first link I posted.
  14. I called his clinic and they say you have to have proof of cancer before he can treat you. How are you going to do that with adenoma's or are they only doing the trial on post surgical people with recurrences?
  15. http://www.sciencedaily.com/releases/2009/07/090723113707.htm
  16. I'm watching this documentary on Stanislaw Burzynski and googled him and found this. He's in Houston. He's taken on the FDA and won and has reached the 3rd stage of clinical trials for his alternative treatments. He is endorsed by Suzanne Somers. He's saved a lot of people and prolonged their lives who had no hope otherwise. He is sponsoring this trial. http://www.stemcellscience.org/showtrial.php?trialid=NCT00003457
  17. Well, they said they kept seeing the low sodium and high potassium and that was their only clue. His father had had an adrenal crisis from steroids so that's how he became familiar with it. Had it not been for that, she probably would've died before they could figure it out.
  18. I just saw that on Untold Stories of the E/R and I thought it could save somebody's life. A lot of you may already know that but a lot don't. So there. I'm sure that isn't the only indicator but it's a start. I can't remember the symbols for them, but I think K1 is Potassium if you want to check lab reports.
  19. Ok, you're welcome :rolleyes:

  20. http://dfw.cbslocal.com/2011/05/16/blood-sample-may-tell-those-dying-to-know-when-theyre-going-to-die/
  21. Yea, but I still say we need to find the source and stop treating letting them keep us chasing our tails treating the symptoms. Is low dopamine the "disease" or, again, is it another symptom like diabetes? That's the whole witches brew that they keep selling us. Not that I'm not going to try it. It seems quite a bit closer to the source of the problem than what we've been doing. I just want to know why some people get this and other don't.
  22. Well, what is it that causes the low dopamine to begin with? Is it stress, chemical exposure, or what?
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