Geode

Thanks, Dani ... I have seen 2 rheumatologists who both came up empty. ANA's are perfectly normal. An endocrinologist also thught of Lupus because of the rash, but all her testing came up empty, too. I'll check into it again .. How long would it take to show up? I was just tested again 2 years ago, after almost 14 years of being symptomatic

Hello, I’m new here. I’ve been having problems for almost 16 years, have seen 7 doctors and 16 specialists, and they all say “I don’t know.” The last few years I’ve been going from forum to forum for different conditions, like the little bird asking “Are you my mother?” If you’re willing, please comment on how my symptoms line up (or don’t line up) with what POTS patients experience. In your opinion, would it be worth paying out-of-pocket to see a dysautonomia specialist? I understand this is a support forum, and comments will be taken as your opinions and not as medical advice, diagnosis, etc. Before the birth of my only child almost 16 years ago, I was a very active person. I am very task-oriented, and had little patience for passive activities such as watching television. My husband used to say, “You need to learn how to relax.” After childbirth, I began experiencing periods of lethargy, which I chalked up to being a new mother. But instead of getting better as she slept through the night and got easier to take care of, it just got worse and more frequent. After awhile, I also began having sudden episodes of more intense symptoms, usually right after meals. I would get this funny feeling in my brain like I’ve been drugged, then I feel extremely tired and have a hard time just sitting up, and my eyelids get so weak they droop completely closed. It feels like I am extremely sleepy, but I can’t fall asleep, and I don’t yawn like I do when I am actually sleepy. Sometimes my chest feels very heavy, and although I can breathe just fine and my SATS are good, the act of breathing feels exhausting. Sometimes my face gets droopy and I can’t smile. Sometimes I can’t propel my legs forward to walk. Sometimes it feels like someone is reaching in to my chest below my left breast and squeezing my heart. Sometimes I get very chilled and cannot warm up, even in an 80-degree house under blankets. High-carb meals are more likely to cause an attack. Drinking dextrose for a GTT provoked a very big attack (I started to pass out first, lay down quickly, then went into an episode.) But carbs don’t do this consistently, and I also have very bad attacks on strict low-carb diets. Can’t pin it on a food allergy, don’t have a gluten problem. I think it may be the actual process of digestion, because I have video documentation of my eyelids starting to droop after drinking distilled water. Occasionally episodes are triggered by other things, such as climbing stairs, walking through sand, squatting, using my arms above my head, or (ahem, using the restroom) I also developed facial redness in a butterfly pattern, and come-and-go GI problems: vomiting undigested food several hours after meals, abdominal bloating and belching, chronic diarrhea. I get involuntary muscle spasms and fasciculations, but 2 EMG’s were normal. My problems fluctuate. Before I had to quit my job as a school music teacher, one day I would teach 6 periods of folk dancing without any problems. Another day, I would just walk down the hall to the office before school started and the secretaries would say, “What have you been doing? You’re out of breath. You look and sound like you just ran a mile.” I still have times of feeling “normal” but they just keep getting shorter and less frequent. I’ve been tested for so many things: hypoglycemia, anemia, thyroid issues, Lyme disease, HIV, multiple sclerosis, narcolepsy, seizure disorders, exposure to toxins, adrenal fatigue, myasthenia gravis, periodic paralysis, Tarui disease, cardiac issues, lupus, SIADH… I may have forgotten some things. When I feel well I can exercise fine and my HR stays below 150. When I don’t feel as good, my HR can jump to almost 180 with only a minute or two of effort. I asked my doctor about this 2 years ago; she had her nurse check my vitals lying down, sitting and standing. The nurse got very animated, almost shouting: “Your HR is all over the place!” She told the nurse excitedly, “She’s orthostatic!” The doctor says to me: “This just means you’re dehydrated.” So I’ve been drinking a lot of water, but it doesn’t help. She ordered a 24-hour Holter monitor; I was told it was normal. Got a copy of my records a couple months ago, and the report actually says I have sinus tachycardia. My only other abnormal test result is low sodium, one time; there have been other times when my sodium tested fine. I do not normally have problems with passing out, and I don’t think I have blood pooling in my legs. My feet don’t turn colors. Mornings are actually usually my best time of day, especially before eating anything. If POTS is a possibility, I guess it would have to be related to low blood volume and/or splanchnic pooling(???) I wonder about hyperdopaminergia, because I also have blepharospasm. Blepharospasm is one of the first signs in a Parkinson’s patient that their levodopa dosage is too high. Thank God I have blepharospasm, because it got me qualified for disability, even though I feel like the exhaustion/lethargy/weakness/fatigue whatever you call it, is even more disabling than not being able to see! Sorry this is so long. Thanks to anyone who made it through and can offer your opinions. A video if you care to see it: http://www.youtube.com/watch?v=GIwXXf2N4s4&feature=mfu_in_order&list=UL Geode