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arizona girl

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About arizona girl

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    chandler, arizona

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  1. numerous, but I have autoimmune small fiber autonomic neuropathy, which is nerve damage of the small fiber nerves that control your bodies autonomic functions. These were probably damaged by untreated autoimmune disease. I have a surge in norepi on standing as compensation for my blood vessels not constricting due to the nerve damage. So my bp/hr go up on standing and drop low on laying down. Labetalol as an alpha/beta blocker helps with those kind of swings. I was also found to have hypogammaglobulinemia of my igg and igm, which are your master infection fighters of your immune system (ivig)
  2. I take labetalol prescribed by Dr.Grubb. I could not continue with clonidine as my body had an almost addictive response to it, requiring more and more to keep my blood pressure down. I use the short acting low dose labetalol and tirate it up or down as needed. Treating my causes has helped improve it, as well I don't swing as high or as wide anymore. I still have days where it acts up though.
  3. You have fatigue twice. I actually only get night sweats, otherwise I don't sweat much. Some of these symptoms I only get with near syncopes, which doesn't happen often. Others are situational related, like my hands swell if I get hot. My symptoms can get worse with exertion. My fatigue is usually because I already am having symptoms they kind of go together. Less fatigue, less symptoms, or the other way around hard to say. I have lots of different joint and muscle pain. Also have dry eyes, nose, etc. I'm one of those that get hypertensive on standing. So I get head, neck, and lower body pain
  4. Yes, it really does sound more like he is working you up for a pheo. Which actually should be done as part of this kind of workup. If you did have a pheo, it is actually a curable condition.
  5. Kitt, did they do the supine portion of the test or only the standing? The point of supine to standing is to compare the differences from supine to standing and you are suppose to be laying down for at least 20 minutes before they draw you.
  6. Hi, going to chime in! I have hyper pots diagnosed by Dr. Grubb. He suggested my cardio "she get supine and upright serume catecholamines done which consist of norepinephrine, epinephrine and dopamine levels". Mine rose from the 400s to 1000's. Which supported his diagnoses of hyper pots due to small fiber autonomic neuropathy. If you look up labs and catecholamines, it will tell you how to prepare for the test, includes avoiding some foods and medications. I had mine done at a sonora quest lab and they did have a room I could lay down in. It is important to be very quiet and still during the
  7. A lot of us experience or exhibit symptoms of anxiety. There is a non emotional reason though for some of us. Those of us with hyperadregenic pots not only have a rise in blood pressure and heart rate on standing we also have a rise in our catecholamines/adrenaline, mostly of norepinephrine. This is a compensatory response when the blood pools or when something like small fiber neuropathy of the blood vessels doesn't constrict the blood vessels on standing to push the blood to the brain. As adrenaline also constricts the blood vessels the body shoots off adrenaline when the blood isn't getting
  8. Issie, don't know for sure yet if she deals with all genetic issues just know mthfr for sure. I just googled her last name and uofa and her uofa page popped up. The number is a master number for uofamedical. She doesn't have an individual one. I guess it's their scheduling number. If you do that you will get her bio and everthing, better then a phone number which I actually don't have. They've called me or emailed me. Yea, I'm hoping she looks into to those other defects, my cousin has the gluathione one.
  9. Hey, issie, yes there is suppose to be something called mthyle trapping. I didn't feel good when I started the metanx, so I stopped and just did sublingual b12, jarrowdoph and added in flax oil pills for a week or so. I just started the mantex again and I don't notice anything yet. My symptoms might have been because of 44 day menstrual cycle. Who knows these things are so hard to figure out. However my b-12 and d are up finally. Those labs that my cardio did for mthfr showed really high inflammatory markers. She said that those alone would explain the achy fatiguey not well feelings. The othe
  10. I was just thinking the same thing Jana. Hey, I'm going to be down in tucson to see a genetist at uofa, two times actually. My husband is going with me at least to the consult with genetic counselor and then a few weeks later meet with the doctor. She specializes in the mthfr gene which I just found out I am homozygous for, the worst form of it. It explains a lot about my and my families medical history, including miscarriage, strokes and bipolar disease. It doesn't explain though the immune defects and autoimmunity, so I'm guessing another one of my genes is defective as well. The thing about
  11. Hi Dani, was wondering where you were. You still in chandler after the move? Sounds like you an angela are young moms, which is nice to share notes with. Saw you other post, I get a positive ana too, hope they can figure it out. My ana is either from hashimoto thyroiditis per endo or Undefined connective tissue per my rheumy. Who's doing your testing.
  12. Ang, small world, I see Dr. Levine at PNA, who do you see? I know dr. hendon sees a lot of epsy patients. Dr. Levine is more up on the autonomic stuff as he treats a lot of patients with autoimmune neuromuscular disease like ms. Have they done a skin biopsy on you for small fiber neuropathy? Did they do that qsart test on you were they put the electrode on you and measure your sweat? That does sound kind of wierd only testing your bp/hr when your lying down. You said your bp/hr go up when you stand right? To test for pots you have to be lying quietly for awhile and measure then stand up and st
  13. issie, that is Dr. Manek she joined paul howards practice by scottsdale north. You might actually like howard better he is a top doc and he uses nutrtional sups which I know you like better. Don't know if manek has taken on his mo yet, as she came out standford and mayo rochester. She hasn't suggested any to me yet. Hey what endo did you decide to go to? angela, it's amazing the boatload of challenges that come all at once, mine were different then yours but as overwhelming, You think what heck else can go wrong, then one day you are past the worst of it, and you wonder how you got through it
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