diabeticgonewild

Hopefully he won't need a wheelchair in the future. Yeah, manual wheelchairs are not a problem. The permobil-type (a brand), joystick powered/motorized wheelchairs are an accessibility issue.

K, Thank you. I was diagnosed with diabetes when I was five years old. My bladder problems started when I was five, and the problem manifests itself the same way as when I was five, except I have responded to treatment. I have improved. For about ten years, this was the prominent symptom of AAG; the other issues were more transient. All of the other autonomic problems, especially the severe gastroparesis, started with a more insidious onset. My endocrine (diabetes) nurse practitioner came across the disease on the Internet and tested me for it. I had ran across this disease via the Internet on my phone in the ER about a month before she came across it, but I did not directly pass on the name of the potential disease (that I have now been formally diagnosed with). I already knew that I had serious problems, and that autoimmunity was absolutely a possibility in my case. However, AAG is a rare and a relatively obscure diagnosis. None of my current doctors at the time had ever heard of this disease. I just told her that I did not think the autonomic neuropathy was due to my diabetes. I basically told her about my bladder problem (autonomic neuropathy is essentially never present at diagnosis with TYPE 1 diabetes, especially prior to puberty). I also asked her "are you sure this isn't autoimmune?". We both did googling, but my endocrine nurse practitioner deserves credit for figuring this out.

I am concerned about accessibility issues. In the US, an accessible vehicle probably gets a $3,000 reduction on cost, by both the car manufacturers and the US government, on a $40,000 accessible vehicle. Obviously the cost is tax-deductible, but still. You could get a lift for a powered wheelchair and put it in the back seat of a van or SUV, but the chair can easily weigh 200 pounds. I am concerned about the powered wheelchair being a projectile in an accident, so I do not think this option is viable. Also, putting the powered wheelchair on the outside of the vehicle on a platform does not seem viable, especially if it rains. Also, a car accident would be really bad, and not only is the chair susceptible to damage, it could be a projectile that could cause significant injury, even if the chair is on the outside of the car. So I guess paratransit/access bus would be the best option, for me, if a powered wheelchair was ideal, and I was unable to get a accessible minivan.

I just went to the grocery store to pick up a few things and I had a pre-syncope/vasovagal reaction. I literally almost passed out. Now I am extremely exhausted from the incident. I have also been going "blind" when I stand up over the past few weeks. I am probably going to have to get a chair, with power assist, such as the Smartdrive.

Alex, it is true that the presence of symptoms in combination with the antibodies, is diagnostic criteria for AAG. In this November 2011 article, with a cohort of Mayo people, including Vernino, they specifically cite AAG as diagnostic from limited type of autonomic dysfunction such as cardiovagal dysfunction. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3469317/ "Patients with abnormalities in either adrenergic, cardiovagal, or sudomotor function on standard clinical autonomic testing and a positive antibody levels (>0.05 nmol/L) were deemed to have antibody-positive AAG." I'm just saying, once you make the cutoff, you have AAG. (At least according to this article!)

Thank you, Alex. I still have to read your whole post. I don't mean to nit-pick over details. However, in the article you cited in the post, there is a POTS patient with an antibody level of 0.44 nmol/L, which is greater than the < 0.25 nmol/L "cutoff" for "POTS" and fits the "Chronic AAG" titer. Technically, I am contradicting myself by referring to antibody levels, after saying it is irrelevant after the disease is diagnosed. I guess my point is, that there is autoimmunity involved, and it shouldn't be discarded. I think autoimmunity needs to be treated seriously. There are a lot of articles, basically with opinions of professionals. There is a lot of contradictory information, even in these articles. I will ask my neurologist about the quick test. She knows I am an engineering student who is curious and she will explain it to me.

Well, first of all, the Mayo Clinic Laboratories. That is the cutoff value. Even articles that Vernino participated in have this value cited. http://www.google.com/search?q=%22%3C+0.05+nmol%2FL%22&sugexp=chrome,mod=11&sourceid=chrome&ie=UTF-8#q=%22%3C+0.05+nmol/L%22+AND+%22Autoimmune+autonomic+ganglionopathy%22&psj=1&ei=pnmSUc2_K-iD0QHL5YFI&start=0&sa=N&bav=on.2,or.r_qf.&fp=3a4dc8ae193cbe98&biw=1669&bih=952

Well, I found the ultimate test for determining whether it is AAG or not. I can't embed the image on this forum. http://img209.imageshack.us/img209/1277/screenshot20130514at346.png I obtained this off of a google books document via screenshot when I suspected I had the disease about a year and a half ago. I have the whole book chapter and it has all you need to know about AAG. Keep in mind that "high" antibody titers are not clearly defined. Anything greater than or equal to 0.05 nmol/L is not normal. That is something that is universally agreed upon.

I was initially diagnosed with POTS, before I ever had orthostatic hypotension. My autonomic neuropathy progressed gradually. Citing the journal article that alex74alex used where he mentioned table 1 on page 13 , it is entirely possible to fit both "POTS" and "Chronic AAG" criteria, based on the criteria for values listed in that particular table. They are not mutually exclusive. My antibody levels were greater than the "POTS" titer at testing, and fit both the "Chronic AAG" and the "subacute AAG" category (I converted units). Considering that the half-life of an antibody is roughly three weeks, the level of the antibodies is pretty irrelevant once the disease criteria is met.

Also, here are descriptive words for describing your disability, work tasks, etc. http://www.scribd.com/doc/9664427/Descriptive-Words It will help when you have to express your disability in words.

I just applied for disability. Applying for disability is a lot of work, and you have to do a lot of reading. 1. This document was a necessary read and is no longer available on the Internet. I retrieved the PDF off of archive.org. You can view it here: http://www.scribd.com/doc/141313050/Documenting-Disability 2. I highly suggest getting the Disability Workbook For Social Security Applicants, by Physicians' Disabilities Services. You can purchase the physical workbook here: http://www.amazon.com/s/ref=nb_sb_ss_i_0_17?url=search-alias%3Dstripbooks&field-keywords=disability+workbook+for+social+security+applicants&sprefix=disability+workbo%2Cstripbooks%2C218 You can purchase all of the Physicians' Disability Services publications for $20, in digital form, here. http://www.disabilityfacts.com/ 3. I also suggest getting the NOLO's Guide to Social Security Disability: Getting and Keeping Your Benefits. The book gives you all of the information you need about the programs of SSI and SSDI in a clear and concise manner. The cheapest place to get it is here: http://www.amazon.com/Nolos-Guide-Social-Security-Disability/dp/1413316891/ref=sr_1_1?ie=UTF8&qid=1368501728&sr=8-1&keywords=nolo+social+security+disability __________________________________________ I will add more information later. Even if you do a digital application to the SSA, for SSI or SSDI, you can give the SSA as many paper documents as you want. This includes letters from physicians, binders of medical information that is presented in an organized manner, etc. I have heard of people spending 60 full days working on an application for disability.

Alright, sorry to make posts about two subjects in a single thread. I found some decent compression hose that I am going to be ordering soon. They are Mediven Forte Hose, 40-50 mmHg compression. They have a six month guarantee and there are lots of good reviews on them. http://www.compressionsale.com/mediven-plus-40-50-mmhg-open-toe-pantyhose.html This site even allows returns if you try the hose on.

Thank you. I am studying electrical engineering and I am currently a junior. I am going to graduate someday; I just have to get my health sorted out.

Thank you. I was thinking about getting a manual wheelchair with a Smartdrive. The smartdrive is a new kind of power assist. Medicare is covering it, under certain circumstances. I found this out from http://sci.rutgers.edu. I use that site to check out what kind of wheelchair I might need. This is a video of the Smartdrive: It costs a lot for no coverage. http://bike-on.com/product/max-mobility-smartdrive-2026.htm Anyways, if I can't get power assist, I will get an Icon wheelchair, which is a fully adjustable rigid chair. If I can get power assist, I will probably get a TiLite ZRA or TiLite TR3

Was the wheelchair prescription specifically for a powerchair? Did you have any comprehensive evaluations from any of the autonomic centers?

I am getting to a point where a wheelchair may be my best option for being successfully academically and happy with my life. I have took medical withdrawal four times since starting my undergraduate career. I have been unable to work or go to school for about two years now. I am only able to go out to the grocery store and get a few things due to my dysautonomia. I also cannot take showers. I think that a powered wheelchair may be my best option due to the fact that propelling may be an issue and reclining may be useful. How would I go about asking my neurologist for one? Should I go to Mayo, Vanderbilt, or the Cleveland Clinic for further evaluation? I have AAG and I have not improved much in the year I since I have been diagnosed.

It depends. It is not consistent. I guess it would go to about 120. It's not uncommon for it to go above 180. I am not going to call it POTS, but it is POTS-like. It does increase significantly while standing. Heart rate is not blunted for me and this symptom is not universally considered a symptom of AAG.

I essentially have all of the symptoms, too, in addition to positive antibodies. AAG will never be a cause of POTS. POTS is considered to be a limited form of dysautonomia. Also AAG is a disease; POTS is not. POTS is a syndrome. AAG supersedes a diagnosis of POTS, due to the fact that it caused dysautonomia and explains the POTS-like symptoms. In fact, a prior diagnosis of POTS is a misdiagnosis, for somebody with AAG, even if it was the most fitting diagnosis at the time. AAG is usually systematic, or at least it is when it's full blown. The AAG started with my bladder after I was diagnosed with diabetes, almost 20 years ago. It slowly progressed.

Ok, the article that you posted, on page 13, on Table 1: Basically, that is the percentage of people with AAG in the different diagnosis categories. It is entirely posible to have both "POTS" and "Chronic AAG". He is just explicitly listing various diagnostic categories (that patients have been diagnosed with), with percentages for the positive antibodies, so that doctors can spot potential individuals with AAG, AKA a treatable form of dysautonomia.

That's probably a good sign. Keep in mind that they are discovering antibodies all the time, and a breakthrough will come eventually. Make sure to ask your doctors if it is possible that it may be autoimmune. ~50% of patients with AAG do not test positive for the antibody. This probably means that there are more unidentified antibodies, but technically, it is disputable. My neurologist was showing a neurology resident a way to tell if somebody had AAG without a blood test. I was in a hospital bed in an upright position when they did it, but I don't think that bodily position matters. 1. Basically, she had a wooden cotton swab. She snapped it in half. 2. Then she scratched the middle of my shin, vertically. She did it once, making one line (scratch mark) down my leg. 3. She watched the response (I guess the redness), and she and the resident could tell I had AAG. I don't know how or why it works. I will ask my neurologist the next time I see her, at the end of June.

I have more reading to do from your above post. Thank you for all of the information. A lot of people have opposite symptoms of the characteristic features of AAG. For example, I have urge incontinence, chronic diarrhea and tachycardia. The tachycardia is present because my body is able to compensate for the low blood pressure by the higher heart rate. Basically, my baroreflexes have not been lost from the AAG (yet). So, technically you can have AAG with tachycardia, and probably even orthostatic HYPERtension, as long as you have not lost baroreflexes due to the AAG. Wikipedia article about Baroreflex

I would not know, I have never been to Mayo. It is a blood test. I would call and ask the office at Mayo to see if this test was ever performed. It is better not to assume that the test was performed.

How did any of you approach your doctor about using a wheelchair? Do any of you have motorized/powered wheelchairs that recline? Thank you

If you have POTS and the cause (an underlying disease) has not been found, then yes. The blood can be drawn at any draw station (Labcorp, Quest, etc) with a doctor's order. The blood will be sent from the draw station to the Mayo Clinic Laboratories. This is the autoimmune dysautonomia panel, which tests for an assortment of autoimmune causes of dysautonomia, including AAG. http://www.mayomedicallaboratories.com/test-catalog/Overview/89904 Keep in mind that new antibodies are always being indentifed, and not all tests are commercially available. There are patent applications currently out for more tests for specific antibodies.

I have type 1 diabetes. I also have AAG, and like somebody else on this forum, consuming high carbohydrate foods causes flare-ups for me. Try replacing the high carbohydrate foods with nuts, such as macadamia nuts. Another option is high protein foods.