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missaf

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Posts posted by missaf

  1. I can't imagine that anyone with Cushing's would want to chance passing this gene along.

     

    I wish there was a more candid discussion about this. Far too many women are wondering about the risks of passing Cushing's along in some form to their children. Some have chosen to adopt, others to not have any more children period (because of the fatigue of the disease), and other still choose to pursue live births.

     

    I personally can't wait to have my tubes tied and move on without worry. My son is already trending towards symptoms and I wouldn't wish this on my worst enemy, let alone a child...

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  2. Glad you found us, but sorry you had to find us!

     

    You are right to consider Cushing's. PCOS and Syndrome X mimic many symptoms of Cushing's but just like any syndrome, it's a catch-all phrase and needs to be investigated and ruled out before a final diagnosis is to be done.

     

    It sounds like you have an ally with this doctor who saw you in the hall. I would ask him who he would refer you to that would be able to help you. Finding a good endocrinologist willing to diagnose Cushing's or rule it out completely is half the battle.

  3. If the fact that saliva and serum are sometimes disproportionate in some subjects stops the production of a home saliva test kit, then I would have a problem. Otherwise, incremental improvements in the tools we have until we reach our ultimate goal are better than nothing.

  4. Hi Dee. I had United Healthcare and with the plan I was on, we were granted travel reimbursement to a "Center of Excellence" because I applied for it through the tumor/cancer program. Call your insurance company and start asking questions about those kinds of centers and see if it is covered under your plan.

     

    Best of luck and prayers for your daughter and your family. Never stop fighting for a cure to this disease.

  5. Just an update on this thread -- I'm applying for Benefits under the APPLICATION FOR BENEFITS FOR CERTAIN CHILDREN WITH DISABILITIES BORN OF VIETNAM AND CERTAIN KOREA SERVICE VETERANS.

     

    I'm willing to fight this long fight to recognize that my birth defects and health relate directly to my dad's AO exposure. I'm also willing to file for my son, who has listed defects from the list!

     

    http://www.vba.va.gov/pubs/forms/VBA-21-0304-ARE.pdf

  6. Yay! Thank you Dr. F!

     

    What results were you seeing from the cortisol hair samples in comparison with diagnoses of patients? Do you think this test will be beneficial in the future?

     

    For those Cushing's patients with chronic pain, and with proper legal and medical authorization, what is your opinion on marijuana use in the un-diagnosed or relapsing "Cushie?"

  7. Thread hijack!

     

    I've not seen anything pass through so far except things like type 2 diabetes, pancreas damage, liver damage, etc... but AO is a growth hormone antagonist in plants, I'm betting good money that it messed with the pituitary gland for certain. I put my birth defects on the registry and was told that they weren't tied to AO, but when my dad was in Vietnam and saw photos of other girls with the same problems and talked with a Vietnamese doctor, he knew for certain they were tied.

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