diabeticgonewild

I've no experience with the compression, so will be interested to read the replies.

I got my wheelchair from the hospital, on the NHS. I don't know if the situation will be different in the U.S, but it might be worth asking your doctor or consultant if you can get a free one? I got mine about ten years ago, and they come and service it free of charge when anything goes wrong with it. It officially belongs to them, but I've been told to keep it as long as I need it. Wheelchairs can be pretty expensive to buy, especially to get a sturdy one which was essential for me. Mine also has a seat belt so that if I faint whilst in it, I don't fall out of the chair.

I'm sure other people in the U.S will be able to give you more thorough advice.

Thank you.

Does anyone have an ultra lightweight wheelchair?

I have an appointment with my neurologist at the end of June. I am unable to go out except for picking up a few things at the grocery store. I cannot go shopping, go to school, or work. I cannot stand for long periods of time. This has been going on for a couple of years, and I have not improved significantly with treatment. My quality of life has diminished.

I have also consulted a specific forum, http://sci.rutgers.edu, which is for people who use wheelchairs. I am thinking about either getting an Icon Wheelchair (fully adjustable rigid chair) or a TiLite titanium wheelchair-Tilite ZRA or TiLite TR3. With the TiLite wheelchairs, I could use a power assist, such as the

I really want to go back to school but I don't know how I could do it without a wheelchair.

POTS is a syndrome, which is a diagnosis fit for no underlying disease cause.

AAG is a disease and is a primary cause of progressive autonomic failure.

If you have AAG, there's no point in referring to your tachycardia as POTS, because the underlying disease is known.

When people apply for disability due to POTS, they encounter a lot of problems due to the diagnosis being a syndrome. The SSA treats syndrome diagnosis differently than diseases and it is significantly more difficult to prove disability due to POTS.

If anyone needs any further clarity regarding this issue, look up the differences between a syndrome and a disease.

My autoimmune dysautonomia is getting out of control. I am going to get compression hose and an abdominal girdle. I am thinking about getting 40-50 mmHg compression hose. The only brand that makes this compression, without custom ordering is Mediven. The style offered is the Forte. If I order custom, the cost is twice as much.

For a girdle, I am thinking about getting this.

http://showcase.designveronique.com/designveronique/index.php/shop/postsurgical/mid-body/non-zippered-abdominal-girdle.html

If this doesn't work I might get a wheelchair.

Anyone have advice or tips for compression or wheelchairs?

Diabeticgonewild,

My son was diagnosed with POTS back in 2011 by MAYO. However, my son has not made much progress with medicines for treatment. His symptoms have progressed and am looking for more answers. Our cardiologist believes there is also more going on than just POTS. What test are used to make this diagnosis? Is it just the QSART test?

This is the test that is used for diagnosis.

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

I tested positive for the ganglionic nicotinic acetylcholine antibody, and therefore I have AAG.

Thank you Diabeticgonewild for sharing your treatment protocol.

I had plasmapheresis done many years ago. My husband was the donor. Are you using a donor or are they using your own blood?

How lucky you are to have a neurologist who understands how to treat you!

Is it someone local or someone from a big clinic, like CC, Mayo or elsewhere?

How are you responding to treatment?

I have no donor, as far as I know. The replacing fluid is albumin. My blood cannot be used, as it has antibodies.

I don't see anyone from a big clinic. I see a neurologist in Houston that specializes in neuromuscular diseases.

I have never seen Vernino. I don't see the point of doing that. I would have to go to Dallas every 2-3 weeks at least.

I am responding poorly to treatment in my opinion. I get better and worse. Overall, I think I am getting better, from my worst point.

I have been unable to work and I applied for disability.

Out of curiosity, for those of you who tested positive for the AChR antibody, how elevated were your titers? From what I read these titers are supposedly low in POTS. Thanks, Alex

I am not going to give out a specific value, but mine were < 1.0 nmol/L.

I have AAG. I was diagnosed last year and I have been receiving treatment for it since then. I have received both plasmapheresis and IVIG.

It is a progressive disease, unless treatment has occurred. However, the disease is not considered to be degenerative.

I have yet to improve from prior to my decline, from when I declined prior to diagnosis one-and-a-half years ago.

OP, please note that the guy in the article did not make a full recovery. It often takes several years of treatment.

What treatment are you receiving? Some people take IVIG and others are prescribed steroids. How about you?

I was diagnosed in January 2012.

I first received 5 consecutive treatments of plasmapheresis (in about a week's time). Then, a month later, I started on IVIG. I received that every 2-3 weeks for about a year (up until March 2013), until it became ineffective. I now have plasmapheresis every 3 weeks, two treatments each time.

The current order for plasmapheresis is for six months. I will probably switch back to IVIG around September.

My neurologist says that sometimes IVIG becomes ineffective and that you have to switch to another treatment for 6 months. After that, you can switch back to IVIG and you start seeing improvement again.

I also have type 1 diabetes so steroids would be a nightmare, since I take insulin. My AAG is too severe to only take steroids.

That’s good information kitt. I’m trying to find the TEST ID on for this Alpha 3 acetylcholine antibody test on the Mayo’s website. I can’t find it. I want to see if it was part of my paraneoplatic panel. I don’t think it was. If it wasn’t – I am definitely going to ask my doctor to have it run.

I think there are 3 different "tests" that Mayo can do that test for this antibody. They are all the same panel (the same tests) but have different IDs.

These are the two I found.

Test ID:89904

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

Test ID:89886

http://www.mayomedicallaboratories.com/test-catalog/Overview/89886

I tested positive for the antibody you listed. I have AAG and I have been receiving treatment for over a year now.