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Lemons2lemonade

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Everything posted by Lemons2lemonade

  1. This sounds spot on. Is this the guy in the dc area? Also, I was literally just talking to Issie yesterday about the beta blocker thing pretty much verbatim. The insulin component is interesting and I have considered that as well. Maybe this accounts for the high angiotensin ii- to balance it out, leading to aldosterone etc. When this started I thought for sure I was diabetic, and I even had an attack during a gtt, so there's that for you. My glucose was fine. If you've ever seen a diabetic attack it is so similar its unbelievable, only they continue to drop until they fall into seizure, while we use the tachy to come back. This would also explain the detrimental affects of alcohol, not only as a vasodilator and urination trigger but also as an insulin effector, which would amplify this process. When I got sick initially, I would have one cocktail, and per 6 times- large voids no joke.
  2. Hey all, I just got out of my autonomic reflex scan at mayo. The woman doing the scan was a technician who was trained in Rochester. The first part of the test consisted of putting plastic suction cups with clear watch like bands on them around my arms and legs, I believe there were 4. Each of these suction cups had a hole in the top of them where an injection of acetylcholine is sent through to the skin and then pushed.through the skin via electrical type diffusion where the ach can reach the receptors. The body's response to this should be sweating, and the sweat produced is collected in the suction cups. The sweat produces a change in pressure of the suction cups which is how the sweat output is measured. This response is graphed as 4 lines and is recorded during the ach stimulus which lasts around 5 minutes and 5 minutes after the stimulus is complete. It feels like a slight burning. For the next part of the the test they have you breathe into a tube (which has a surprising amount of air resistance) and watch a meter, which, in this case was a blood pressure meter that measured your breath output I.e. you blow, it goes up or down etc. They try to get you to hold it at 40 mmhg. Then, they have you follow a light pattern to control the rate of speed in which you breathe in and out. When the light gets to the top you stop breathing in and breathe out until the light gets to the bottom. During these tests, your pulse is measured through an ekg, and your blood pressure is measured through a little band that goes around your finger. The last test, is a simple ttt, with no stimulus injected.
  3. The blood draw did kind of get me today. It was a lot! I thought they were going to lose me half way through, but i stuck it out moved slowly, and ate a banana literally on my way out of the room. All day i have been pretty light headed though, really tired, and exceptionally thirsty.
  4. Today, I had my first emg and evoked potential test. These tests are to look for peripheral neuropathy. And to see if it is contributing to my pots. The emg was strange. They hook up electrodes to your body I wanna say around 5 in a certain area like your foot. Then they take this other thing that has two prongs on it and shock you. When they do this, they get a read out of action potentials almost like an ekg wave on a monitor. They then do this on other areas of your body. Sometimes the shocks cause you to reflex. They range from less intense to more intense, and the intense ones can be quite startling. All.shocks are localized in the area in which they are being initiated, except some which head up to your spinal cord. The evoked potential test was probably one of the most amazing things I have ever seen in my life, but was at times, quite painful. This test was done by a separate Neurologist at mayo who was becoming certified at this particular test. A thin needle was inserted into areas of my leg and foot. The insertion was not very painful. Then he would move the needle around to pick up signals that displayed themselves visually on a monitor as action potentials and also as sound waves that you can hear. Seeing this on the screen and hearing it was probably one of the most amazing things I have ever seen in my entire life. It was like I walked into a busy cafeteria to hear people having all different kind of conversations only these were conversations within my body, and MAN, were they noisy. It was like everyone had something to say. And there were so many! One right after the other, after another, constantly throughout the duration of our lives. The experience was nothing short of miraculous. I said to the neurologist, " I'm just a a battery!" To which he smiled and seemed amused. I asked him about the action potentials and he explained to me that we were looking at a muscle fiber, or a bundle of neurons. There were approximately 5 needle sticks where this occured. Each left a slight, small bruise but nothing to be alarmed over.
  5. Florinef also helped me with this. Wonder if you are withdrawing jangle, from your prior trial. Also, giving myself a big hit of salt in the morning helped with this. I remember before I started taking florinef I was having too much salt and I think that was causing me to urinate more. Also, there are other electrolytes than just salt like potassium, which is important if you are urinating frequently. A banana or some o.j. can help put these back into your bod. Now whether or not they get absorbed is an entirely different question.
  6. Interesting, what do you mean by intense hunger, like just a craving or more like growling stomach? What are you hungry for? Blood also carries glucose to the brain as well as oxygen, wondering if your brain was craving some glucose because of lack of flow?
  7. I brought up angiotensin ii and he smirked at me. And noted that he was aware of ideas about this. He did not say this but my interpretation is that it is not clinically significant, I.e. even if they were off, it has not been studied enough to reveal remarkable information for guiding treatment.
  8. After I talked to Dr. Goodman, these were the tests he ordered for me For lab: 24 hr urine sodium Bloodwork: -am cortisol - 25 hydroxy cut d2 d3 - alt - anca panel - angiotensin converting enzyme - antinuclear ab - ast - vit b 12 - calcium - cbc - copper - creatinine - electrolyte panel - extractable nuclear antigen antibody with ena panel - folate - ferretin - glutamic acid - gliadin antibodies - glucose - hemoglobin 1ac - lactate plasma - paraneoplastic autoantibody evaluation - pyruvic acid - sedimentation rate - tsh - tissue transglutaminase ab iga - tryptase - catecholamine fract ortho endo And for diagnostic tests: - emg - holter monitor - autonomic reflex screen ( look up to get info on it)
  9. I do not even know where to begin. I got a referral from my doctors office and health insurance company 2 months ago to see Dr. Goodman at the mayoclinic. I am now in Arizona and saw Dr. Goodman for my first visit on Monday morning. Following that appointment, I was directed to wait in a lobby so that all of the tests could be scheduled. The scheduler then called me up 15 minutes later to tell me that there had been a problem with my insurance company and that I needed to call them and resolve it before my tests could be ordered. I called my insurance company's customer service line where they told me that my referral was approved accidentally and that they were no longer going to honor it.( Are you freaking kidding me?! I am in Arizona.) I have spent the last 72 hours addressing this and only after I threatened to sue them, write my legislators, the media,called the corporate office, went through my insurance contract stating the specific violation and essentially told them that not doing this would cost them more in the long run, was a phone call made to Dr. Goodmans office. His nurse called me this afternoon and said, " I just recieved a bizarre phone call from your insurance company." I told her that I bet she did ( my letter was very frank and legally threatening including words like 5 years of misdiagnosis, fraud, good faith, written agreement, and lawsuit.) Ultimately, my insurance company called mayo directly and said something along the lines of "give her whatever she needs." Man did I have to work for it though. I probably talked to over 30 people within my insurance company including my internal medicine doctor who was awesome enough to call me back from his on duty shift at the hospital, and the assistant to the medical director(whose number and contact info I had to find on my own- I looked up the business office phone number online, talked to the drone who answers the phone at the front desk and asked to be connected to the medical director, he told me he could connect me to the secretary. ) This experience just goes to show how much you need to fight sometimes against pots and part of that fight is with your doctors and insurance companies. Keep fighting, don't give up, and you will get your treatment. The squeakiest wheel gets the grease.
  10. There is psychology associated with standing. It means something needs to be done or that you are going somewhere. Interesting how pots prevents us from doing both.
  11. It's getting to the point where every day I wake up, I am getting more and more paresthesia in my arms and legs. Why is this happening when I am flat in bed ? Also, I am not laying weird on them... What is my body doing at night to cause this to happen?
  12. I grew up on well water which seems like it would have much more minerals than city water. Anyone elsewhere grow up or go through a period of life on well water?
  13. I hate to say it because organ damage is more challenging than hormonal supplementation...
  14. Okay I was really bad tonight. I went out and had pasta and breadsticks. I was expecting to be oh so punished. But then something strange happened, half way through the meal. All of a sudden I got this burst of energy, not like an adrenaline rush. Almost like if I had a couple of cocktails, I was giggly and couldn't sit still. Not what I was expecting.
  15. There is a connection. Vasodilation opens up vessels to excrete mucous.
  16. I hate to say this, but the fact that saline works better than drinking makes me think kidney/intestine problems.Not to mention it bypasses the stomach.
  17. my symptoms are like a wave. Sometimes high sometimes low, always continuing the cycle on an on every day. Severe presyncope is a more dramatic wave, it is like in and out and in and out.
  18. This is such a great observation julie, before i ever got tachycardia etc. i was having problems bending over. In fact, bending over for me is worse then standing up. You would think that bending over would supply more blood to the brain?
  19. On an average basis Low, mid, high? Mine is low.
  20. Jangle, higher levels of sodium in the extra cellular fluid would change the electrochemical gradient across the cell membrane and could affect membrane potential. Perhaps the increase of flow through the sodium channels is changing the sensitivity of the vagus nerve via electrochemical force. Or actually having extra sodium in ecf would actually reduce the the electrical capacity of the cell and seems like it would definitely affect the voltage gated channels.
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