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About diabeticgonewild

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  1. Hey, wanted to know how your pcm project worked out for you?

  2. Rasin, I have AAG (ganglionic nicotinic acetylcholine receptor antibody positive). I know somebody whose AAG antibodies would go from the high end of normal, and then upon being retested, would be slightly abnormal. The single abnormal test prompted IVIg treatment. At the very minimum, you need scans for cancer and retests for this panel every few months.
  3. I have AAG. The only credible commerical laboratory that tests for the antibodies associated with AAG is the Mayo Clinic Laboratories in Rochester, Minnesota, USA. You may be able to use DHL Export Services to rapidly deliver the specimen to the laboratory. However, only 50-60% of those with AAG test positive for the antibody. There is another test that involves norepinepherine levels that is diagnostically indicative of AAG, which can be read in this article (you may have to purchase it). Clinical laboratory evaluation of autoimmune autonomic ganglionopathy Anyways, I wish you luck.
  4. Here is your question answered. It is illegal, unless all students are required to have a liability waiver signed, according to the ADA Title III Technical Assistance Manual. http://www.ada.gov/taman3.html May a public accommodation refuse to serve an individual with a disability because of limitations on coverage or rates in its insurance policies? No. A public accommodation may not rely on such limitations to justify exclusion of individuals with disabilities. Any exclusion must be based on legitimate safety concerns (see III-4.1200), rather than on the terms of the insurance contract. BUT:
  5. I am pretty sure that the liability waiver is illegal under Title III of the ADA. Here is another Title III ADA violation involving people with hearing impairments being forced to sign liability waivers to get sign language interpretation. http://www.ada.gov/yavapai_regional_mc.htm
  6. Also, does the school receive any federal money? If so they cannot make you sign a waiver on a condition of the student's need for accommodations, as covered by Section 504 of the Rehabilitation Act. Either way, in the US, your child is covered by the Americans with Disabilities Act, under Title III, even in private school and it does sound like this is illegal (I can tell you that this is *illegal* in *public schools*). This is what I have found searching for "Title III" and ADA and waivers and liability, so far. http://www.justice.gov/crt/foia/readingroom/frequent_requests/ada_coreletter/clt
  7. You need to contact Advocacy for Patients, Inc./Jennifer Jaff Center, or the Disability Rights Education and Defense Fund. * http://www.thejenniferjaffcenter.org/ * http://dredf.org/ That is so illegal it isn't even funny. This happens to children with diabetes all the time, for what it's worth, over administering children insulin. This is completely unreasonable for the school to be doing this, for any reason, including dysautonomia. Do not sign it.
  8. My orthostatic hypotension is much less significant since starting treatment. I still do have resting tachycardia, which worsens while standing, to a certain degree, depending on the day. I am not an expert on the disease and I am not going to go against the word of a medical professional. I am just pointing out my specific case, but I think the AAG is less severe in my personal situation, although I have another autoimmune disease that is metabolic in nature that can cause progressive autonomic failure. I think at this point of time the worst component of my AAG is the fatigue, energy, and co
  9. Quote from RichGotsPots ________________________________ In my opinion the G in AAG stands for Gangliopathy. Ganglia are the autonomic nerves and Pathy refers to the damage. Just like Neuropathy. So Gangliopathy refers to autonomic nerve damage. Also when autoantibodies are high enough to detect they are causing damage, that is not just the case in AAG but that is true for all autoimmune disease. In AAG the autoantibodies that have been found so far attack and damage the cholinergic synapse which is connection btwn pre and post ganglion nerves. My comments about AAG treatment were directed
  10. The antibody involved with AAG does not actually damage the nerve, so there would be no real benefit in doing a skin biopsy.
  11. PM me. You need to read the entire Social Security website, and personally (or get somebody trusted, other than disability determination services) collect ALL of your medical records that have anything to do with your disability, from the beginning of the impairment. You need your doctors to write letters in support of your application for disability, specifically mentioning "recurrent arrhythmias" with syncope or pre-syncope. A tilt table test and/or holter monitoring often meets the criteria. Syncope and near-syncope on a TTT, in combination with "recurrent arrhythmias" is automatically eli
  12. I do not have cancer, but the problem is that rituximab is not routinely covered by insurance for autoimmune diseases. My doctor said that patients with diseases like CIDP have a lot of trouble getting rituximab authorization through insurance, and so that was why Cytoxan was the initial choice.
  13. I was approved for SSDI on the first try, for autoimmune dysautonomia, primarily. I did not have a lawyer If you meet the Blue Book criteria for disability (pre-syncope and syncope are in the Blue Book), your education is not a factor. Here are a (very basic) set of tips, to do before you apply for disability: * Before you apply for disability, you need to read the entire SSA website and purchase certain books and workbooks, and read the entire books and fill out the forms inside the books. 1. http://www.amazon.com/Disability-Workbook-Security-Applicants-Edition/dp/1878140000/ref=sr_1_1?ie=UT
  14. Babis, I just got done with my first cycle of chemotherapy, in the form of Cytoxan IV. I probably vomited over 20 times over the course of three days, but the chemo wasn't that bad. I am already starting to respond--I think. E Soskis, I would do whatever it takes to treat the AAG properly. YOU deserve to have a manageable disease. Syncope and near-syncope on a TTT, in combination with "recurrent arrhythmias" is eligible for SSI/SSDI, or Social Security Disability. Please consider this if immunosuppression will make you unable to work. Make sure your doctors write letters supporting the Blu
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