kitt

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

Sue, I also have the low BP upright and also have extreme hyper pots. Not all hyperadrenergic pots patients have high BP. Perhaps most but now all. I know of a Dinet member who also has hyper pots and also has low blood pressure, so please don't tell me it's not possible. My understanding with this specific condition is that often the diastolic BP drops quickly. Mine does, so am wanting to get this testing done, but am deciding if I can do it from home with a current doctor or if I should go to Mayo. Have been there many times, and they do a good job, but it's costly and tedious. Regardless of what testing you've had done, they will redo all testing. All. I stopped counting last year after my cardiologist billed my insurance over 15,000.00. Worth it, but thinking about spending the time, energy and money to do it all over again at Mayo is tiresome. Lucky to have good insurance, but it seems excessive. But that's how Mayo operates. You can give them all the prior records you have and regardless of how recent or exceptionally done, they will redo every single test. Miqual had this test done from afar, and that's the way I'd like to proceed. I'd like to get the precise code for ordering this test so I can share it with a doctor who will order it. If anyone can share that I'd appreciate it. Best, K

Alex, You're right, Dr. Vernino is entitled. Thank you for adding that! But so is the Mayo Clinic. He and the Mayo Clinic developed the test in together. Here's a comment from Dr. Vernino regarding his experience. Pasting: “When I was at the Mayo Clinic we developed a test to look for antibodies against a particular receptor in the nervous system. When these antibodies bind to that receptor, they block the control signals that need to get to the autonomic nerves. When that happens, the body can’t regulate the blood vessels, the heart, the stomach and the sweat glands to have them operate normally,” Dr. Vernino said. Here's the link. http://www.utsouthwestern.edu/education/medical-school/departments/neurology/news-and-events/news/steven-vernino-aag-baseball-player-hope-diagnosis.html#

Miqual, I've been researching this autoimmune form of pots for the last month. There's some good information on the internet, but not enough. Hope you'll share what you learn as you go along and your experience with IVIG if you go that route. From an article by Dr. Grubb. Pasting: Many patients will report the abrupt onset of symptoms after a febrile illness (presumed viral), as well as after pregnancy, immunizations, sepsis, surgery, or trauma. It is currently felt that this form of POTS has an immune-mediated pathogenesis. Studies have demonstrated serum autoantibodies to alpha3 acetylcholine receptors of the peripheral autonomic ganglia in patients with postviral autonomic neuropathy. It's true that all auto immune testing for this must go to Mayo. Here's the link to Dr. Grubb's paper. http://www.lupusmctd.com/index.php?topic=1974.0;wap2

Best wishes Jangle, Good bless and good wishes! K

B 12 on a Mayo site. Very basic info. http://www.mayoclinic.com/health/vitamin-B12/NS_patient-vitaminb12

Tachy, Good abstract, wish I could read the full article. I knew that both MS and Parkinson's patients have high incidence of pots, but did NOT know this that was stated in the abstract you posted. Quoting: While both standing epinephrine and norepinephrine levels were significantly higher compared to levels in the supine position in the non MS group, only standing norepinephrine levels were significantly higher in the MS group. That IS interesting! Thanks for sharing.

It really is astounding! 2 websites... First which suggests which form of B12 to take. The lozenges...and the Methyl! Not cyanocobalamin. I bought 1000mg B12 methyl lozenges at Whole Foods tonight. Be careful where you buy vitamins and supplements. If you're buying them anywhere other than a quality health food store you're taking a risk. The bottle may say 'distributed by New Hampshire' but they can be sourcing from China. If you're buying at Costo or a pharmacy you may be taking a risk. Your decision, and anyone can do their own research on it. Here's a good primer on how to take. http://www.livestrong.com/article/374400-how-to-take-methyl-b12/ Here's a fascinating article on how differently the Japanese view B12 requirements compared to the US, and they have very few Alzheimers patients in Japan. Also a great piece on the methyl form of B12in this paper, and why to take that form as opposed to the others. http://the-moneychanger.com/articles/what_you_dont_know_about_vitamin_b12_can_hurt_you

I found this video mentioned on a Mayo site, and it said this deficiency could cause MS, and almost every conceivable neuro disease including dysautonomia. It's one of the most amazing videos I've ever seen. How many on DInet have this I can't help but wonder. Easy to get checked, and easy to treat.

A good article... http://www.psychologytoday.com/blog/turning-straw-gold/201304/8-things-i-miss-most-result-chronic-pain-and-illness And I liked her follow up article even better. http://www.psychologytoday.com/blog/turning-straw-gold/201304/tapping-self-compassion-help-ease-everyday-suffering

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Have always had an extreme sensitivity to light, and also have blurred vision when I 'least suspect it'. Don't know why but it still surprises me when I can't read the words on the computer screen or focus on the television. A few weeks ago I saw an opthamologist with what I felt like was a new kind of eye issue. Have always had extreme itching and redness in and around my eyes due to mast cell issues, but a few weeks ago I began waking in the morning with my eyelids literally 'stuck' together. My eyelashes were also stuck together. It was like a crusty glue. Couldn't open my eyes until I got to the sink and applied a warm compress. Thought it would 'go away', (always my first thought and hope with a new symptom), but it didn't. The opthamologist did an exam and prescribed a drop called Zylet. Contains corticosteroid and an antibiotic. It helped with some (but not all) of the stinging pain and some of the crusting but the issues continue around my eye area. If it continues will see a dermatologist. It's significant and noticeable by other people and it's in both eyes. So want to get it resolved. Has anyone taken Zylet or had this kind of issue?

Rama, This is an important distinction. Many MS, Parkinson's and CFS patients develop pots, yet few people with pots develop MS, Parkinson's or CFS. Mayo's newest paper published this year notes that 50% of pots patients have a viral onset. CFS patients have a high viral load to CMV, EBV and HHV6 as well as Coxsackie viruses. Not necessarily to all those viruses, but often to at least 3. Researchers have long suspected that a retrovirus is the possible etiology of MS, and CFS researchers continue to believe that a retrovirus may be the cause of CFS.

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And from another site on 'Group C nerve fiber' http://en.wikipedia.org/wiki/Group_C_nerve_fiber

Thank you Rich for sharing, Here's a dysautonomia 'primer' about small fiber peripheral neuropathy published by The Dysautonomia Connection that might help people understand some basics. Helped me to begin to understand small fiber peripheral neuropathy, and had it bookmarked. I reread my bookmarked articles and it helps me to continue to review the basics. http://thedysautonomiaconnection.org/about-dysautonomia/small-fiber-peripheral-neuropathy/

Found this on Medscape regarding high dopamine and high norepinephrine. Also mentions renal disease. Don't have familial dysautonomia and am not of 'Jewish extraction'. (Seems to be a prevalent theme in my search for 'dysautonomia, high dopamine and renal disease) Don't want to go 'there'. An example of too much internet information for my purposes. But here's some research. Lots of pages to this article. http://emedicine.medscape.com/article/1200921-overview#a0104 Another article on renal disease in familial dysautonomia. http://www.ncbi.nlm.nih.gov/pubmed/17059997 Never felt better that I don't have familial dysautonomia. Something to be glad for. Counting my blessings.

Interesting, so (20%) of low blood volume may be attributed to dopamine? Or did I read that wrong.

Wouldnt it then be called a dopamine transporter inhibitor rather than a norepinephrine transporter inhibitor? SNRIs basically just increase norepinephrine. Since at least some POTS patients have abnormal NE clearance as it is it may worsen POTS in these patients (see Dr Raj's response in the 2013 newsletter for DINET). However, apparently some do well on SNRIs at least according to Blair Grubb. Combined SSRI SNRI are reputed to increase serotoninic input in the brain stem and reduce sympathetic outflow. Alternatively, selective SNRIs reduce sympathetic outflow directly by NE stimulation of alpha 2 receptors in the brain stem - infact that might be what causes POTS in NET deficiency (blunted vasoconstriction and baroreflex abnormalities)/ Rama, Interesting. I've had a crazy year with several difficult DX's, yet I've had no depression or mood issues. Am thinking is it's because my dopamine levels are very high. (Dopamine levels were tested as part of the plasma catacholamine testing. My norepinephrine is very high but my dopamine is also very high.) Any thoughts on the relationship between dopamine and mood?

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We bought a Vitamix at Costco earlier this year at a cost of right at 500.00. I like buying at Costco because you can always return it without a receipt as they have all your purchases online, and will return items with no questions asked. The Vitamix works for us because we make green smoothies, soups, hummus and nut butters. I was spending 7.00 per green smoothie almost daily at Whole Foods. Now I cut up several apples, add kale, spinach, banana, blueberries, (pineapple if you choose) and a little bit of ice, and the Vitamix times itself, meaning it's automatic on the 'smoothie' setting. No guessing when it's done. For soup I make (before I had a Vitamix) broccoli soup. Once I saw Gordan Ramsey make it, I thought, "that's my soup!" So easy. Cut up two entire broccoli, (stems, leaves and all), and boil. Add all green pieces to a blender or food processor if you don't have a Vitamix. Add salt, (and add onion and garlic to the boil beforehand if you choose.) I choose! The difference with the Vitamix is the soup comes out far smoother. It pulverizes it to get the maximum nutrients. The blades actually rotate at 240 mph...Crazy. You can make the same soup with cooked carrots. Am not a carrot fan, (too sweet for me) but it's a good soup by most peoples standards. Both soups freeze beautifully, and have zero-ish calories. I've made the broccoli soup in the Vitamix without cooking the broccoli, but raw broccoli has a very intense taste, so haven't done that since. Smoothies are so much fun. You can add yoghurt, milk, nuts, peanut butter...And with the Vitamix it comes out so smooth. Don't mean to sound like a commercial, but this is how I love to eat. Whole food!