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Pianist

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About Pianist

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  1. My vitamin D was 13. The endo said it was half normal, which isn't really accurate. Normal is from 32-100. So it's actually 20% of the middle of that range (66%). He said "sorry we can't find the answer to your problems.. the vit D is more of a long term thing having to do with your bones". Since then all of my symptoms are disappearing. So, it's possible they have found it by accident without realizing it. Scary. By they way, I researched it and new research shows vit D is also a hormone and supports your immune system - and actually tells cells what to become. In my case it looks like it was creating autoimmune like problems.. my immune system attacking my tear glands. Also, as a side note. If this is truly the problem, then the ramifications are startling. I almost very easily ended up on a laundry list of meds.. Lexipro, Ambien, Florinef, Desmopressin, Lorazepam, Restasis, punctal plugs in top and bottom tear ducts.. and still feeling miserable with the meds doing God knows what.. I wonder how many people are out there who have something as simple as a vitamin deficiency and are on a bunch of medicines causing a ton of side effects and don't even know. Wow.
  2. It's been 2 days since taking the Vit D suppliment and many of my symptoms are disappearing. I'm keeping my fingers crossed. Even if this is it.. the question remains why was I hugely deficient in Vit D (I'm outside alot and eat a good diet. Also, Vit D isn't supposed to have much to do with the major symptoms I;ve been experiencing (although I've read some research that says Vit D has to do with your nervous and immune systems.)
  3. After explaining some symptoms I've been experiencing to my endocrinologist (dizziness, esp when chaning positions) he measured my blood pressure while I stood up without using my arms. He saw something "wierd" - I think my BP spiked upward. From what I've researched orthostatic hyoptension is when the BP falls... so what the heck is it if it goes up? He's sending me for "ANSAR" testing.. sympathetic/parasympthetic test. Thanks
  4. //why did your doc say florinef could kill you?? When I mentioned it he looked it up and must have seen the possible side effects.
  5. Was checked for Sjogren's last year - negative. Endocrinogists pushed for test again this year because I have the classic symptoms (my lacrimal glands that produce tears have all but shut down), dry throat and mouth, etc.. I was tested again a couple of weeks ago - and the doc didn't call (assuming negative), but I'm supposed to do a lip biopsy soon, which should be a definite yes or no.
  6. After 2 years of tests, upon tests and a dozen doctors, my endocrinologist says I got half of the normal Vitamin D. She doesn't seem to think that it would cause all of the symptoms I'm having. It's strange because I'm outside more than most people, and I eat a good diet. Anyway.. does anyone here have that? and know what they effect of that would be? What exactly does "half normal" mean? Symptoms: 24 hour migraines, severe dry eye + internal eye pain, major cognitive impairment, waking up feeling very dehydrated, dizziness. BTW: He gave me a prescription for 50,000 units(?) of Vit D once a week.
  7. I had all of these symptoms that I was dehydrated, but my electrolyters were balanced. Doctors (including nephrologist, 2 endocronologists) seemed to always roll their eyes when I asked about chronic low blood volume. Well, I did a bunch of research, convinced my family doc to send me to the BVA100 test at a hospital 3 hours away and guess what: Turns out I'm 10 percent low (about 530CCs low). This is after taking Desmopressin (which increases blood volume) everyday for 4 months.. so I'm wondering what it was before. DDVAP was like a miracle cure (even curing some lifelong problems) but most of the symptoms have returned over the past months. Does anyone know can be done about low blood volume? (b4 taking this test, I asked about Florinef - both my family doc and an endo said it could kill me) Does anyone know of any good resources for chronic hypovolemia? Symptoms starting 2 years ago (gradually got worse): Floaters, severe dry eye, eye pain, very dry mouth/throat, photophobia, 24 hour migraines, cognitive impairment Lifelong symptoms: Fatigue/fatigue attacks, the shakes in the afternoon if I don't eat a snack, getting easily overheated when exercising, wierd sudden episode that occasionaly happens when I exert myself too fast (head pressure and pain/rapid heart beat/thick feeling in heart- lasts for a few minutes), extremities fall asleep very easily.
  8. I was wondering if anybody else out there got severe dry eye at a young age. About 1.5 year ago I started getting all kinds of wierd eye problems (before a bunch of other stuff started) dry eye, eye strain, photophobia, high interocular eye pressure. I'm 35, my neuro-opthamologist said I have the dry eyes of a 75 year old.
  9. Lisa, I noticed that you aren't taking Florinef and it seems like alot of people on this site are. Did they ever consider this for you?
  10. Did they determine that congentital heart disease was causing the hypovolemia? Also, I was wondering if it's possible for blood volume to fluctuate? This may be worrying to much, but I was wonderingif it's possible that the BVA-100 test will show normal if I go at the wrong time, and then all that time and money was wasted.
  11. Has anyone had tests done where the doctor marks "CFS" as the reason for the test. I'm wondering if health insurance would cover the test. Thanks!
  12. Do any of you know of anyone going on employment disability from CFS/POTS?
  13. For years I would almost pass out when getting up too quick. It was getting worse and then about a year and a half ago I started having all of these other symptoms: eye dysfunctions related to the brain, severe brain fog, dry mouth/throat, random heart racing. My whole life I've had a normal blood pressure. All of a sudden a year ago I had a high blood pressure and it's been that way ever since (a few random times it's been low). Since then I haven't had the "woozy", almost passing out episodes when standing up. It seems like my body is vasocontricting to keep the low amount of blood in my system circulating. Has anyone encountered this? (your system increasing your blood pressure in reaction to low blood volume?). Thanks.
  14. Do you mean it was $1500 after insurance? that was the part you paid? So, did they actually tell you what your blood volume was (in liters, etc)? P.S. I've slowly started to get better over the past few days. I'm still not exactly sure what happened.
  15. There's many reasons to believe Florinef might help me (see below). I saw my family doctor and asked him if he thought I should go on it. He looked it up in his book and said he didn't want to put me on it because it could be dangerous (I think he saw the part about Potassium). I've read a bunch of articles from doctors saying the opposite, notably this one: http://www.pediatricnetwork.org/medical/CF...experiences.htm So have any of you been warned that Florinef is dangerous? I've notice that quite a few members are on it. I have a lot of the symptoms of CFS. Desmopressin + salt made me feel incredible for a while, but over the past 4 months the symptoms have returned. My metabolism seems to be adapting (in a bad way) to the not urinating for 9 hours a day, and I've always gotten water intoxicated from the Desmo very easily. Initially the water retention part of desmopressin made me feel incredible. I have to use salt to make sure I don't get water intoxicated. So, Florinef would give me the same benefits without having to worry about getting water intoxicated. I'd just have to make sure my Potassium stays in a normal range.
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