diabeticgonewild

You are very welcome Rasin. Good luck!

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.

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.

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: The minimum height requirement would be a permissible safety criterion, if it is necessary for the safe operation of the ride. ILLUSTRATION: An amusement park requires individuals to meet a minimum height requirement that excludes some individuals with disabilities for certain rides because of a limitation in its liability insurance coverage. The limitation in insurance coverage is not a permissible basis for the exclusion. _________________________________________________________________________ How to file a Title III ADA complaint. http://www.ada.gov/t3compfm.htm

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

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/cltr110.txt It is discriminatory to apply eligibility criteria orstandards that screen out or tend to screen out an individualwith a disability or a class of individuals with disabilitiesfrom the full and equal enjoyment of any goods and services,unless such criteria can be shown to be necessary for theprovision of the goods and services (28 CFR 36.301). Therefore, singling out persons with disabilities to sign waiversof liability as a condition of becoming a hotel guest is likelyan example of an eligibility criterion that tends to screen outpersons with disabilities.

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.

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 concentration issues that I have that I think are consequences of my other symptoms (severe nausea, chronic headaches from blood pressure issues, etc.). I actually have a gastric pacemaker/neurostimulator for severe nausea from severe gastroparesis (it's called Enterra, manufactured by Medtronic). It is FDA approved on a compassionate basis in the US, so you would have to find the right gastroenterologist who has the right connections to a hospital whose internal board has approved the implantation of the device. My doctor gave me the choice of either a feeding tube or the gastric neurostimulator, and I chose the neurostimulator. I can pretty much eat whatever I want, in limited quantities. It is a life-changer.

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 towards AAG treatment alone hence my reference to only AAG so I am not sure I understand, since by the end you say if autoimmune dysautonomia is suspected you would not be reluctant to recommend such treatments. The other day a Dr. at Mayo said that 33% of AAG patients who got IVIG got much better after. That is about half of the positive results then for other autoimmune attacking illnesses like Vasculitis and CIDP. In regards to Cyclophosphamide (chemo med used in autoimmune disease), I can't speak of any published studies of it's success in treating AAG, but in researching other autoimmune nerve damaging illness there are some studies I can mention. For example in some forms of vasculitis they treat it with a double punch of both Cyclo and high dose prednisone at the same time with about 75% success rate. They also just completed million dollar trial where Rituximab and high dose prednisone proved to be as effective with slightly less and or different side effects. __________________________________________________ In my opinion it doesn't. -opathy refers to dysfunction, not damage. I have AAG and I specifically asked my neurologist if AAG damages my autonomic ganglia and she said no. The answer to this question can be found here: Approximately 50-60% of patients with AAG have antibodies to gnAChR antibody and these specifically bind to the a3 subunit. These receptors are present in all peripheral autonomic ganglia including sympathetic, parasympathetic, and enteric systems. Ganglionic nicotinic AChRs are antigenically different, but genetically and functionally similar to muscle ACh receptors. The gnAChR consists of a pentamer with two a3 subunits associated with the B2, B4, or a5 subunits. Antibodies against these receptors decrease the strength of synaptic transmission at the autonomic ganglia by reducing the number of functional gnAChR. This source (a book chapter from Dr. Vernino) states that the disease process involved with AAG does not damage the autonomic ganglia.

The antibody involved with AAG does not actually damage the nerve, so there would be no real benefit in doing a skin biopsy.

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 eligible for SSI/SSDI, or Social Security Disability, because you would meet Blue Book criteria. Make sure your doctors write letters supporting the Blue Book impairments that you have, before you apply for disability. From the Blue Book: http://www.socialsec...-Adult.htm#4_05 4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c). 3. How do we evaluate arrhythmias using 4.05? a. We will use 4.05 when you have arrhythmias that are not fully controlled by medication, an implanted pacemaker, or an implanted cardiac defibrillator and you have uncontrolled recurrent episodes of syncope or near syncope. If your arrhythmias are controlled, we will evaluate your underlying heart disease using the appropriate listing. For other considerations when we evaluate arrhythmias in the presence of an implanted cardiac defibrillator, see 4.00F4. b. We consider near syncope to be a period of altered consciousness, since syncope is a loss of consciousness or a faint. It is not merely a feeling of light-headedness, momentary weakness, or dizziness. c. For purposes of 4.05, there must be a documented association between the syncope or near syncope and the recurrent arrhythmia. The recurrent arrhythmia, not some other cardiac or non-cardiac disorder, must be established as the cause of the associated symptom. This documentation of the association between the symptoms and the arrhythmia may come from the usual diagnostic methods, including Holter monitoring (also called ambulatory electrocardiography) and tilt-table testing with a concurrent ECG. Although an arrhythmia may be a coincidental finding on an ETT, we will not purchase an ETT to document the presence of a cardiac arrhythmia. *** ETT is exercise tolerance test

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.

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=UTF8&qid=1379181232&sr=8-1&keywords=social+security+disability+workbook 2. http://www.amazon.com/Nolos-Guide-Social-Security-Disability/dp/1413316891/ref=sr_1_1?ie=UTF8&qid=1379181267&sr=8-1&keywords=nolo+social+security+disability 3. http://www.amazon.com/Know-Your-Rights-Handbook-Patients/dp/0977749231/ref=sr_1_1?ie=UTF8&qid=1379181316&sr=8-1&keywords=know+your+rights+advocacy+for+patients+with+chronic+illness * You also need to collect ALL of your medical records pertaining to your disability, which makes the job easier on the person at disability determination services. This person ultimately determines your decision, you better make their life easier. Submit this when you apply for disability IN-PERSON at the local SSA office. * Put the medical records in chronological order, in a 3-ring binder. Highlight all test results, all abnormal findings that apply to your disabling impairments, and anything that suggests you meet Blue Book criteria. * You need letters specifically written by your doctors in support of your disability application. They need to be written to suggest you meet Blue Book criteria by referencing the Blue Book criteria, explicitly. Be prepared to pay the doctors money for writing these letters. * Fill out the Adult Function Report, required for Social Security Disability applications. Be careful and make sure to think all of it out and answer everything with a "Yes, but" if the answer is yes. This can take up to 60 days to complete. Applying for disability is a lot of work, and you need to do it right. You can only submit one application, and once you write about your disability in the forms they make you fill out, you cannot really change what you submitted, usually. Take your time.

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 Blue Book impairments that you have, before you apply for disability. From the Blue Book: http://www.socialsecurity.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm#4_05 4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c). 3. How do we evaluate arrhythmias using 4.05? a. We will use 4.05 when you have arrhythmias that are not fully controlled by medication, an implanted pacemaker, or an implanted cardiac defibrillator and you have uncontrolled recurrent episodes of syncope or near syncope. If your arrhythmias are controlled, we will evaluate your underlying heart disease using the appropriate listing. For other considerations when we evaluate arrhythmias in the presence of an implanted cardiac defibrillator, see 4.00F4. b. We consider near syncope to be a period of altered consciousness, since syncope is a loss of consciousness or a faint. It is not merely a feeling of light-headedness, momentary weakness, or dizziness. c. For purposes of 4.05, there must be a documented association between the syncope or near syncope and the recurrent arrhythmia. The recurrent arrhythmia, not some other cardiac or non-cardiac disorder, must be established as the cause of the associated symptom. This documentation of the association between the symptoms and the arrhythmia may come from the usual diagnostic methods, including Holter monitoring (also called ambulatory electrocardiography) and tilt-table testing with a concurrent ECG. Although an arrhythmia may be a coincidental finding on an ETT, we will not purchase an ETT to document the presence of a cardiac arrhythmia. RichGotsPots, I do not recommend any of these treatments, which includes IVIG, plasma exchange/plasmapheresis, and immunosuppressive agents. There is nothing enjoyable about these forms of treatment. All of them make people sick, one way or another and there are always serious consequences with all of the treatments. For those of us with AAG, the benefits of treatment have often been "transient" and "partially helpful", giving us temporary functionality without control or manageability of our disease. I would only recommend such treatments to people who are unable to work without major adjustments or unable to go to traditional school, due to highly probable autoimmune dysautonomia. If AAG or another readily identifiable form of autoimmune dysautonomia is not diagnosable via an antibody panel, I would be very reluctant to recommend such therapies. I am no medical professional, but I would imagine this would be determined after having the autoimmune dysautonomia panel performed, being seen by a neurologist who is a diplomat in the sub-specialty of autonomic disorders (only ~20-30 neurologists in the US have this certification), and having been seen by a immunologist who is familiar with dysautonomia or is studying autoimmune dysautonomia (there are doctors out there doing this). After this, if autoimmune dysautonomia is suspected, I would not be reluctant to recommend such treatments. Keep in mind AAG is considered to be "severe dysautonomia".

They can use stents and balloon angioplasty to alleviate the issue of not being able to find another place of access for central lines. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036427/ I would get a second opinion. Consult inspire.com

Looneymom, I was wondering how your son was doing, too. Some sort of definite result will come from your efforts and the testing involved with your son. That is good to hear that the whole autoimmune dysautonomia panel has come back negative. However, AAG is still a possibility, but the immunologist seems like the most realistic step at this point of time. I hope you get more answers. It has to get better.

Mayo is the only commercial lab that is credible. One of the labs, on the east coast, does not list your antibody level, so the test is virtually useless. (I know a person who cannot get proper treatment due to not having the antibody levels from the test at this particular lab. This individual also lives in an area with fewer neurologists.) The third option is Dr. Stephen Vernino's laboratory, but that is not a commercial lab and would be difficult to go through insurance. The blood is drawn at Quest, and sent to Mayo. Google "autoimmune dysautonomia panel" and this will be the first hit. Print out the whole page and give it to the person drawing your blood for reference. The CPT code is needed for reimbursement through your insurance, which is on the fees tab.

Looneymom, From an AAG standpoint, up to 20% have central nervous system (usually neuropsychiatric issues such as executive dysfunction, personality change, depression, psychosis and amnestic mild cognitive impairment) involvement (some sort of other disease not due to AAG) and up to 25% have somatic neuropathy. This was from a cohort of 155 patients identified from the Mayo Clinic. While he may have "hypersensitivity" and headaches (likely tension headaches - but might be migranes), this may be a much more complex situation, regardless of the cause. While I am no medical doctor, I am skeptical of all of the reports of central sensitization, as this is only a syndrome. Also, although I have only heard good things about the Mayo Pain Rehabilitation program, I am skeptical of the program. I believe the program is successful through proper referral of those individuals who have a high chance of recovery through stringent rehabilitation. I do not merely have POTS or orthostatic intolerance. I have a disease that adversely affects my entire autonomic nervous system.

E Soskis, If the benefits from IVIG and plasmapheresis are only "transient", which happens to most people with AAG, that is usually an indicator that immunosuppression is needed. I am starting on chemotherapy soon, in the form of cytoxan. I hope you "catch" a break from this disease.

I took adderall when my "POTS" started. That medication certainly made them worse in addition to any amphetamine or Ritalin type medication. I cannot help on the rest. Hopefully there will be answers with these tests and a proper diagnosis comes, as POTS of any type is only a syndrome. Thus, only symptoms are typically treated.

Tilting the head of the bed up at 6 to 12 inches or 5 to 20 degrees is beneficial. Wedge pillows will not do the trick. The form of dysautonomia I have is autoimmune, and thus has a different course than many people on this forum, but if I do not exercise for about five days, for any reason, life is bad. I also cannot swim due to having a permacath (dialysis catheter) for plasmapheresis. I am grateful for the treatments, but they are all a form of torture to me. Here are some countermaneuvers. (Look for the tables) http://en.wikipedia.org/wiki/Wikipedia_talk:Articles_for_creation/Autoimmune_Autonomic_Ganglionopathy#Cardiovascular_Management

You probably need to find the cause of your neuropathy before you start trying medications for neuropathy. The stuff in this medication is only for diabetic somatic neuropathy. Also, diabetic neuropathy is caused by reactive oxygen species during cell metabolism, when glucose is broken up in to ATP and beyond. The glucose metabolism process involves glycolysis, the krebs cycle, and the electron transport chain.

Has anyone seen the DYNA Inc. educational/informational video? http://dynainc.org/docs/dyna_full_product_order_form_1.pdf I am a college student with autoimmune dysautonomia and I want to know if purchasing the video will be beneficial.

The guy in the YouTube video is using a Tacprogear PSD vest, which comes in sizes and seems more lightweight than the vest I received today. I am thinking about modifying the phase change materials, by following this (expired) patent application, in example 1 (page 4) http://www.scribd.com/doc/147288342/Reversible-Phase-Change-Composition The chemicals, distilled water, calcium chloride, and potassium chloride can be purchased easily (and locally).

Using a tactical armor plate carrier vest, file with ice packs (or phase change packs-which is usually lighter and is cooler) works. Also, the vest costs much less than a typical cooling vest and probably is more durable. Here is the one that I received in the mail today. http://www.amazon.com/Tactical-CA-302B-Adjustable-Carrier-Airsoft/dp/B00BJ6AXIS/ref=sr_1_1?ie=UTF8&qid=1371333899&sr=8-1&keywords=lancer+tactical+vest Here is where I found the idea: (I think the guy has a Tacprogear vest, which comes in various sizes, and seems more lightweight than the one I received. Search for Tacprogear on amazon, although the vests are more costly.)