UnicornIsis

Hey Everybody, Its been a while since I've been on here, so probably nobody remembers me. This post was originally written for posting on a forum for the other main disorder I have, but I re-wrote some of it to be more understandable here and more geared towards this forum. I'm looking into something for myself and I'm trying to research it as much as possible before I make a decision. The topic for those that are wondering what I'm talking about finally is: Service Dogs/Service Animals. In additon to my NCS and POTS I have a few other conditions, such as EDS Hypermobility Type. The NCS, POTS, and EDSH as I'm sure all of you know, cause me to have trouble with balance sometimes, and with joint locking or popping out of joint. Its not often, but its enough to use a can sometimes, but not often. I also have a neurological movement disorder call Generalized Dystonia. I have spells that look like grandmal seizures, called GD Storms. I also have spells that only affect certain areas of my bndy that look like petitmal seizures and are called simple reactions. My GD not very progressed, I don't have permanent postures but I do get simple reactions and Storms about once every two weeks to once a week. I'm home alone, which I'm not supposed to be due to the GD and NCS, and POTS, but there's no choice. My husband is in the Navy, so we don't live anywhere near family and TriCare won't cover anyone staying with me. Until the last 3 or 4 months we've always has a roommate who somehow managed to be on the opposite schedule as my husband, so there was usually somebody with me most of the time if anything happened. But lately when I've had reactions and spells I'm by myself and its a little scary. Most of my simple reactions are my neck, jaw, eyes, mouth--as in I can't talk, right shoulder, right arm, and sometimes breathing. And usually when I have a simple reaction, even though the rest of my body isn't spasming or locked, I don't have control over it somehow. I'm wondering if anybody else has a service dog/animal and what the dog does for them? I would also like personal opinions of what any of you think the dog would be able to do for me, if anything. Thanks, UnicornIsis

Hey everybody, I need to find an NCS/POTS doctor down here in Jacksonville, Florida or near it. Someone to treat me. The only ones reccommended on the adult sites are docs at Mayo. But from what I've heard and been told, the Mayo docs just diagnose you, they don't treat and maintain you? Is that so? Also does anyone know of any docs that aren't at Mayo? Thanks UnicornIsis

Okay, I'm probably gonna get disagreed with or yelled at even. First I haven't read the articles. But here's the deal as far as I've been told my my doctor. DeCosta was the frist Doctor who documented all or most of the symptoms of NCS and POTS and the like. Yes he HAPPENED to be a Civil War doctor treating Civil War SOLDIERS. Even among civilian docs there are still tons of different names for this. So naturally military docs are going to come up with their own names just like the civilian docs did. And its not that common for military docs to colaborate with civilian ones or the other way around. And the populations they were seeing the most were ones in HIGH STRESS areas/situations that happened to be soldiers because they don't treat civilians. Its completely normal that soldiers, sailors, and airmen would develop it after going to war, because that's a major stress, and that's one of the major reasons most of us develop it as civilians, from some MAJOR STRESS. They most likely already had the tendancy to develop it, but needed something to trigger it, the way a car crash or mono or pregnancy or some other major stress tiggered it for most of us. Its what Michael J. Fox said about MS, you're born with a loaded gun, and something happens to trigger it. I'm sure for some of them they developed it from chemicals and toxins they were exposed to because those things affected the ANS so of course they'd develop the same SYMPTOMS as the rest of us because its the same SYSTEM that's affected. Its like if you break your leg riding your bike by accident and some bully breaks your leg on purpose because you forgot your lunch money. You're going to have the same symptoms from different causes because its the same thing/area/system that's affected. And jsut because you're not military doesn't mean what they do or the research they come out with doesn't apply to you. That's like saying I AM military to the research and treatment civilian docs do for this don't apply to you because you got sick while you were in the military even though you didn't go to war. Okay, done with my thing here for now. UnicornIsis

I just got a chance to read this and wanted to add my 2 cents. I got sick at 19, maybe eariler, we're not totally sure and have NCS primary and POTS secondary. My mom who is 54 now started having symptoms when she was in the middle of menopause about 3 years ago. My doc said its normal for you to develop it after menopause if you hadn't developed it already and you were going to. He said any major stress could make it "active" as I say. From hitting puberty, to graduating, to college, to getting married, to buying a house, to divorce, to menopause, to any other disease or condition that appears, or even the death of a loved one. Any kind of good or bad stress. And my father's grandmother had it. She had it until she died. I don't know what age she was when she died, but it was old enough to have 13 children and see the youngest to the age of 13 at least, because I know of a picture of them all standing together and the youngest is 13 at that point. It was their 30th Wedding Anniversary I belive. I don't know when she developed it either, but definately by the time she started having most of her kids. They all remember it from when they were little and most of her grandchildren, the older ones, remember it too. So I'm pretty sure you can develop it at any age. And that's what my doc said to, that there's any time and age you can develop it. Hope this adds more help to your case! UnicornIsis

I bet its the stone. My engagement ring is Tanzanite. I like turquoise and light blue colors and its perfect for me. I like the bluer one, as opposed the the purpler. And yeah, its sorta like the country because the stone was named for the only place it occurs, which is Tanzania. I hope I'm spelling all that right. UnicornIsis

Also, MVPS is generally considered the same as NCS, and POTS. So check out the downloadable book on the www.NDRF.org website. All of my docs have liked that so far and I can even understand it pretty well. (Although I have to be honest, I STILL haven't read the whole thing. ) UnicornIsis

MVPS --- Mitral Valve Prolapse SYNDROME, as Rebecca said is considered a type of Dysautonomia. Most docs now call MVPS either POTS or NCS, most say its POTS. The confustion started when a doc who wasn't communicating with the rest of the community who handle diseases/syndromes like this, decided to try to make a name for himself by calling it something different and writing a book and several medical articles about it. Most of the docs who treat and specialize in Dysautonomia don't call it MVPS, but a few still do. Also yes, there ARE docs who don't believe in NCS, POTS, MVPS, or any other type of Dysautonomia. Mostly because there is no test that they can do and say YES you have it, NO you don't, HERE ARE THE MEDS, now you're all better. The cardio that originally diagnosed my MVP with NO regurg, still doesn't believe it exists, even though the doc that diagnosed me at Johns-Hopkins is the one that trained her! Needless to say I don't see her, and my Dysautonomia doc, who is a cardio, diagnosed the regurg which I DO have. So what you're finding out isn't unusual. Check out the book The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide (Paperback) it does a decent job of talking about Dysautonomia and explaining what happened with the naming. Also check out the book on the NDRF.org website available for download. Hope this helps, and no you're not crazy, but you DO NEED to find a good dysautonomia doc. UnicornIsis

Doc A. said at some point I should have testing to see if I have low blood volume. Now that I've moved and no longer see Doc A. on a regular basis, I'm slowly bringing my new doc up to speed on things and at the same time, only telling him what he needs to help me and not going to him with every little thing like I did Doc A. And if little things are bothering me, I either call Doc A., or save up several for when I go back to the new doc. He's just an internal med doc at the base hospital, not anything relating to Dysautonomia and hadn't heard of it before. But he's great and really willing to learn and try to help me with it. He's also great about saying when he's in over his head and sending me to a specialist or someone else he thinks might be able to help. So I'm pretty lucky. The last appoinment was more of a check-up and to get official permission to get off the new med for something else I was taking that was lowering my blood pressure too much. Once that was taken care of I asked about getting tested for low blood volume. I already have hypokalemia--low potassium, which I'm on potassium suppliments for. So he said since my electrolytes are already out of wack, extra low most of the time, it probably wouldn't be able to tell us much and would come back negative because my suppliments would put the level back up in normal range. And it had to be low for a positive test. All it was was a short blood test. They only drew one vial and I got the results a few days later saying that it was negative. When I called my doc back he said that I probably had it but he wouldn't take me off the suppliments just to get a positive result. Which I agree with unless its absolutely necessary. He was on vacation for a month and the doc handling his patients while he was gone got my refil prescription messed up and only had me on 8 MEQ's twice a day instead of 10 MEQ's twice a day. Believe it or not, but not getting those 4 MEQ's a day has really made me tired and have no energy. There's bound to be some other test and from what some of y'all are posting it sounds like there IS another test. Can someone tell me what its called so I can tell my doc or describe it so I can tell my doc. If you describe it, I'll probably just print what y'all write and let him read it. Or send me to a link that I can either print or send him too. I'm not having much luck searching with google. Thanks, UnicornIsis

May I suggest taking a semster off OR taking less classes during the semester. Right now you need to concentrate on getting medication straightened out and trying to get some kind of quality of life better. I took a semester off and it really helped me. I haven't been able to go back full time and have only been able to take one, 1-night a week, class a semester since, but that's better than trying to take a full load and not being able to do ANY of it. Right now you need to focus on your health. If you don't get your health straightened out first, you won't be able to do any classes or clinicals while you're sick, or at least you'll have a lot more trouble. From what it sounds like as bad as your symptoms are, if you don't get them under some kind of control you won't be able to do any classes or clinicals or you'll definatly fail them. That's not what you're working towards. So I'd suggest take some time off, either a semester of just less classes for the semester and get yourself a good doctor. UnicornIsis

Frist, I'd like to say this: JUST BECAUSE YOU HAVE A HANDICAPPED PARKING PERMIT DOES NOT MEAN YOU ARE DISABLED! I've had them before when I was in a leg/foot cast and on crutches because of leg surgery and because of sprained ankles. Does that make me diabled? I don't think so. I just means for that some reason or other I need to park close to the entrance of something. Now with that rant out of the way. Swallow your pride and get the **** thing. I've learned that if I need something to help keep me from getting sicker then I NEED it and I'm going to USE it. I grew up in a small county, the entire county went to 1 high school and it had less than 500 students in all 4 grades. So everybody grew up together and knew each other. I was not popular and mostly a loner because I was one of "the smart kids" and my brother was MVP of the football team which is LIFE there. So he was one of the most popular people in the school even as a freshman. Let me tell you, walking through Wal-Mart on a Saturday night with my CANE at 20 and seeing my brother's "friends" pointing and laughing loudly at me was not the most energizing experience. And neither was getting out of the car at the mall with my mother having parked in the handicapped space because I couldn't take the heat and all the walking across the LONG parking lot and watching the "popular girls" from my year walk by laughing at me for paking in the handicapped space at 20. Well guess what. I NEEDED those things so I USED them and I held my head high and walked past them as if I didn't notice them. If I could go through all of that, you can **** well get the parking permit so you can save yourself from getting so sick from heat and walking and having to lay down in your office before you can work. Sorry, I don't mean to make you mad, but you really hit a nerve on this issue. And everybody else, yes I know I'm being mean and I apologize to EVERYONE already for being mean but sometimes something hits a nerve and I can't not say it. UnicornIsis

I see Dr. Hasan Abdallah. He's a pediatric cardio and he REALLY knows all of what we're going through. After hopkins said "go home I'm done with my study so I'm not treating anyone anymore" I found Doc. A. He is the reason I have the quality of life I have now. His website with contact info is: http://www.childrenheartinstitute.org/index.htm And there are 2 other doctors in his office who do NOT specialize in Dysautonomia. Don't see those. And you may have to re-schedule your appointment several times to actually get to see Doc A., but its worth it believe me. My mom and I used to drive (well me riding) 3 to 3 1/2 hours each week to see him, and that was one-way. IT WAS WORTH IT!!!!!! We don't make the drive anymore, because I moved out of state. But believe me, he's worth it. And he'll treat you even if you don't live within driving distance of him. Please give his office a call and SAY: "I'm a POTS patient." When you ask for an appointment time. Also if you don't want to see him or want someone closer to you, call DYNA Kids. Hope this helps. UnicornIsis

My mom had to stay home with before I got married. She got called for Jury Duty twice I think. Both times she had my doc write a letter explaining my condition and that she was the primary daily care-giver, that I was not supposed to be left alone. She mailed it in and that worked just fine. UnicornIsis

Okay another stomach/GI post, but the first one from me. I ended up in the ER the other night NOT for severe heartrate/bp, breathing trouble, bad shakes, or dehydration. Usually those are the reasons I go, only when I have trouble enough to need some kind of medical help, otherwise I just ride it out at home. Well the other night was different. I ended up there with stomach problems just in case I had eaten something bad and because I couldn't stop burping and had trouble throwing up all the way. GROSS PART COMING (I did the first time okay, but about 3 or4 hours later when I needed to again, it came all the way to the back of my throat and went back about 5 or 6 times, so I was a bit worried about that). Here is my question. I'm wondering if anyone else gets this. When I'm hungry I have to eat right away, within about 5 to 10 minutes depending on the time. If I don't eat right away I start burping. And sometimes I don't know that I'm hungry or that I need to eat until I start burping. And it hurts when this happens. If I don't eat within about 5 minutes of when the burping starts, I get really sick and it hurts really bad. And if I eat too much I can get sick and make it hurts more too. Most of the time I can catch it before it happens because I eat about 5 or 6 small meals a day about every hour to 2 hours or so. But if I don't its bad. Example: We can be in the car driving somewhere, say Wal-mart which is abut 20 minutes away (the Super Wal-Mart anyway) and I start burping. We have to stop at the closest fast-food place or even a gas station if its really bad and get me food to eat RIGHT AWAY or I get worse and get really sick. Its as if my stomach doesn't trigger my hunger reflex until its just about to start digesting the stomach acid, or until it has already started. The doc in the ER seemed to think this was all acid-reflux or GERD. Does this happen to anyone else? I never had this problem at all before I got sick and its only happened with in the last 2 years, which I guess is most of my sick time since I got sick about September of 2002 we think and got really about about Spring of 2003 and especially early winter of 2003. Does this sound familiar to anyone or anyone know what this is? I'm going to make an appointment with my regular doc for sometime next week as the ER doc suggested. Also, the doc gave me prevacid. They said I'm supposed to take it as soon as I get up and on an empty stomach and not eat or drink for an hour afterwards. HOW DO I DO THAT?!?!?!?! I mean right now, I have to eat as soon as I wake up because I'm hungry right away and I can't not eat because I get the burping and get sick. And I usually take my pills right away too, if I don't I feel aweful until I'm able to take them. Anybody that takes this have any advice? I'm wondering if taking it at night right before I go to sleep will work better since I don't eat or drink after I go to sleep. Anybody who takes this have any ideas or suggestions? P.S. I just realized something I should probably add. I've noticed every night (the last 2) since I had to go to the ER I burp for a while aftr laying down for bed. And it hurts when I burp. That's weird for me because usually when I burp, it doesn't hurt any. Thanks, UnicornIsis

One other thing that nobody else has seemed to mention but helps me. I DO NOT SAY POTS OR NCS. I say the whole name out long. They're not going to know what either one is most times, so saying or writing out (as I do) the WHOLE NAME makes them pay more attention. I have never been drug tested for any of/any times I've been in. I HAVE been pregnancy tested every time. I asked them one time why I was being pregnancy tested since I was on my period and that was the reason I was in, I was too dehydrated from loosing so much blood. They said its routine to test EVERY woman that comes in over the age of 10/11 or 13 depending on the ER for pregnancy. The reason it is, that you could be and not know it or you could be and know it, but don't want to tell whoever brought you in so you won't tell the ER staff. And they reason they need to know is so they don't give you any medications that could harm the fetus. I just figure hey, its a double-check that I'm right and since my family and my hsuband's family (all the MANY extended parts too) keep asking us if I'm pregnant yet, I tell them "well the last time I went to the ER was ______ and it was negative then" and for some reason they believe the ER test over me just saying it! Anyway, just wanted to add those bits. Hope this helps. UnicornIsis

For me the words IRREGULAR HEARTRATE seem to get me seen faster. Keep in mind the normal wait for an ER visit is 2-3 hours to be seen as long as there aren't overloads or anything like that. My dad was an EMT, my aunt was a Cardiac Tech, and many friends are as well. They all say the normal wait is 2-3 hours, mostly closer to 3. Taking the bucket for vomiting will help too. But you alsmost NEVER get seen the second you walk in unless you're bleeding badly. Also I have 3 pages I carry with me at all times and a photocopy of them too to hand to the triage people for them to keep if they don't want to make their own copy. The first page is "Medications" and then all of them listed, name, dosage, mg, and how many times a day. The second page is "Conditions" and then all of them listed. The third page is "Allergies" and then all of them listed, medications first, then latex and adhesives, then food, and then things like wool and seasonal allergies, insect stings, poison ivy. You can also add a fourth page "Doctors" and then list all of the doctors he sees regulary or specialists who follow him, their phone number and office info, and their on-call number if they have one, and who to call first if the docs there are having a problem. I've noticed that for some reason they pay more attention to it on Notebook/Computer sized paper in Large Writing than on a small wallet card. I've tried both and they always pay attention to the Large papers, and most of the time just browse or ignore the wallet card. Also I try to joke with them or if I can't I get my husband to. I wait till they're reading the 2nd page, Conditions, and then I almost always say: and if you've hard of/or know all of those you'll be the first person. And say it jokingly. That ususally gets them because even if they THINK they know what NCS and POTS are even though they don't really, most have never heard of EDS -- Ehlers-Danlos Syndrome. I've had to explain that one every time. I try to joke and be lighthearted through out the whole triage part, it really seems to get them on your side or at least more willing to listen and help you. And the same thing with the nurses and docs once you get back there. The calmer and more relaxed you are the nicer and easier to deal with and more willing to listen and give you what you want they are. Hope this helps. UnicornIsis