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Everything posted by Natops

  1. One area that EMGs are used in is detecting neuromuscular disease (example LEMS or Neuromyotonia). These diseases are caused by autoimmune (calcium channel or potassium channelopathies). On top of these peoples fatigue, weakness, and muscle pain due to this autoimmune disease – they also suffer from dysautonomia (majority have POTS). Antibodies are tested via - Mayo Clinic Paraneoplastic Panel
  2. @p8d I remember my nurse holding my bottle of IVIG and saying I hope I don't drop this - it cost $7,000. That was for one day. Is subcut IG cheaper?
  3. The entire earth’s surface is blanketed in Satellites transmitting (microwave) radio freq all over.
  4. Tenacity - Do you think autoimmune channelopathies could cause this physiological stress leading to low oxygen in muscles - chronic lactic acid buildup / chronic muscle pain?
  5. You are waiting to undergo some test.... what test?
  6. B12 injections sent my POTS in to over drive. I was laid up in bed for a week.
  7. @andybonse Do you live in America? - if so - did you have to get a doctors script to get this blood drawn or did the lab draw it without a doctors script?
  8. Lambert Eaton (LEMS) disease is a autoimmune disease (calcium channel antibodies) that's chief symptom is muscle weakness. The majority of LEMS patients Ive talked to suffer from POTS as well.
  9. My sister lives in Charlotte. Just gave birth and immediately suffered from high fever from a kidney infection putting her in the ER and admitted to hospital. Now she is suffering from severe weakness, tachycardia, anxiety, depression etc. Yes her doctors are focusing on postpartum anxiety disorder… but I told her if her weakness, dizziness, and tachycardia doesn’t clear up… its time to start looking into possibly autoimmune cause. After being sick myself for so many years with autoimmune/POTS I’ve done lots of research…. I’ve learned a large percentage of women’s dysautonomia occurred (triggered) at pregnancy/birth. So anyways…. Any recommendations for doctors in the Charlotte area that specialize in dysautonomia or autoimmune?
  10. I too would like to know what Earthing Sheets are about. Ive never heard of it. Must confess.... I always have a hard time understanding electricity and grounds....
  11. Your symptoms are similar to a disease called Lambert Eaton disease which is caused by calcium channel antibodies found in Mayos Paraneoplastic panel. Look into it. Your on IVIG- so that may skew any blood work you get done. There's numerous antibodies in the panel that are deemed to be the pathogen for many autoimmune conditions ranging from neuromyotonia, Limbic Encephalitis, ataxia, LEMS, autonomic neuropathy, etc, etc. wish there was a place in the US that provided commercial blood work similar to what CellTrend offers. As this website has pointed out - muscarinic and adrenergic receptor antibodies are emerging in people who suffer from dysautonomia. I've read journals where it's being found in samples of chronic fatigue syndrome/ ME patients. I've read journals where it is found in 70% of Lambert Eaton patients.
  12. Since no insurance co is involved it would seem pretty petty for a doctor not to sign an order. What would they have to loose? Have you been tested for Mayo's Paraneoplastic Panel? Not sure about your question - most those agonist you listed are decongestant? They over the counter? You have an antibody perhaps even more- have you researched immunosuppressant treatments? There's also plasmapheresis and IVIG to research.
  13. Does Cell Trend (Germany) require your doctor to sign and approve an order? Or will they do the test for anyone without a doctors script? Payment is out of pocket right? No insurance pays for blood test from Germany.
  14. You said through cell trend - did you get tested for muscarinic receptor antibodies as well? You live in America?
  15. @agregory757, I’ve seen dozens and dozens of doctors (including Mayo) concerning my N-type AB. Unfortunately I haven’t found an answers to the cause, a diagnosis, or treatment. Usually an aggressive search for cancer (normally CT of lungs for SCLC….but it can be other cancers as well) is ordered. If no cancer found, routine scans for 3-5 years. No cancer puts you into the autoimmune category of unknown cause. Besides POTS what are your other symptoms?
  16. Did Mayo Clinic (or any other doctor) run the full Paraneoplastic Panel on you? http://www.mayomedicallaboratories.com/test-catalog/Overview/83380
  17. Are there any results from the antibody blood test that were done from last years 2015 Dysautonomia Conf in DC last year? I was not there.... just curious.
  18. Yep. I have it. Mine is caused from calcium channel antibodies. Google Lambert Eaton and see if those symptoms match your.
  19. …And I wasn’t suggesting to not seek the help of specialist. If you have dysautonomia, neuropathy etc… a doctor is probably your only chance of finding help. I’m simply saying try not to get frustrated when doctors don’t have the answers…. As I mentioned above there are few doctors that understand this stuff and even the ones that do may struggle to diagnose you. I was lucky. I was only into my unexplained illness for a year - twelve doctors later – when a POTS specialist ran that specific test that no doctor had even mentioned. Bingo – antibody found. Now doctors have to listen to me… they can’t just shrug off my blood results…. It’s open up doors to treatment options…. Unfortunately… they haven’t been responsive… or they are too costly to pursue (IVIG). The disease name (diagnosis) or cause of the antibody escapes even the top autoimmune specialist at Mayo.
  20. I don’t mean to sound to pessimistic. I think there is a difference between pessimism and just trying to be truthful. I suffer from autonomic neuropathy…. And lets be clear autonomic neuropathy is a symptom… vs. a diagnostic disease name. The cause of autonomic neuropathy would be the disease. Dysautonomia/ Autonomic neuropathy (in my humble opinion) is a very gray area of medical science. Neurology in general is a gray area …compared to other medical sciences. The “specialist” will admit they don’t understand most of the science behind it. Yes they do know a lot… but I’ve been sick for 5 years…. In that 5 years…. I can hardly count on one hand a success story I have heard of diagnostic /treatment/ remission…regard to POTS/ SFN/ Dysautonomia etc etc. Autoimmune diseases are shrouded in unknown and unexplored laboratory testing. So, when you say one specialist pass you off to another specialist…. I’ve seen over 30 doctors. Many people here have been through doctor after doctor. I think the reason is that this is a poorly understood symptom / diseases. The proof – look how many people go without finding answers. Look how few doctors there are that specializes in dysautonomia. There’s not many. Far and few between. Luckily there are sites like this that we can come together and share information to help each other deal with this mysterious ailment.
  21. Similar.... the antibody I have is found in a small percentage of AAG patients co-exitisting with the nicotinic Achr AB
  22. Did you have a specific antibody that helped aid in your AAG diagnosis?
  23. I have chronic neuro muscular pain/stiffnes in my feet calves hamstrings hands and forearms. Its mostly in my feet, calves. No inflammation. Its gets worst when I am still (not moving). Im pretty certain the type or cause of my pain. Channelopathy. I have confirmed calcium channel antibodies (N-type). Ion channels (Potassium, Calcium, Sodium, and Chloride) are channels in your cells that are responsible for moving neurotransmitters from one cell to another. On the cell surface there are pores (gates) that (Potassium, Calcium, Sodium Chloride) open and close allowing these chemicals to flow in and out which allows the cell to reach a certain electrical current (Voltage Gate). Once that certain electrical current is met.... neurotransmission fluctuates from one cell/nerve to another. If you have unexplained neuromuscular pain... you may want to read up on ion channelopathies. Many myopathies are caused by antibodies to a specific ion channel. In fact, the antibody I have is one of the most frequent tested antibodies in POTS patients. http://www.slideshare.net/DukeHeartCenter/2-kamal-chemali-855am-autonomic-disorders-neurosciences-conference-vb-2014
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