leah1321

Hi I was actually just diagnosed with Lupus or Rheumatoid Arthritis, but most likely Lupus. my ANA is actually quite low. I do not have any high blood test results, but I have many of the symptoms, including the rash and some other positive tests plus deterioration of connective tissue. I mention this because the symptoms are the most important detail, not the blood tests. My doctor has followed me for years and just decided that he would treat me as if I had Lupus. It is true that only 5% of Lupus patients ever get a serious case. It is not generally life threatening and it has remission/relapse cycles so sometimes you feel good. In addition, autoimmune diseases have a lot of good treatments now because there has been a lot of research recently. I am taking an anti-malarial to try to put me into remission long term. It is helping but no remission as of yet. There are a large number of autoimmune diseases and the ANA could suggest one or it could suggest other forms of inflammation like infections and such. GI problems like celiac sprue and crohns could elevate ANA, so could some blood disorders. I say that not because I want you to worry but to try to eleviate worry- there are a million explanations and many are not so bad or are even completely benign and treatment options are good. See a rheumie and write down your symptoms. Also, relax and don't stress out about one blood test one time. Sometimes blood tests are just that- tests and they could mean nothing. Leah

I like to buy the kits for children to learn how to do new hobbies and then books to learn more in depth after i decide if i like the hobby. then i buy the equipment and such and get to work. I do little projects because i have to take long breaks and have a few long term ones always going. i have done cross-stitch since i was really young and I like it a lot but it takes a lot of concentration for a big project. there are small ones that you can do though. Occassionally, there are ones with the pattern printed on the material. The stitch is super easy to learn (basically just an 'X'). I also knit (there are some fun kits at target and Michaels) and I just learned crochet and it is easy and exciting because it moves very quickly. You can see your project grow right before your eyes. Also, one needle and only a few possible stitches. You can make lots of things with no pattern. I have one project I make for people that I knit- it is a head kerchief thing that is trendy and cool and only a two day project- and i have arthritis and need to spend only short amounts of time on these things! I also like photography and have like 100 photos of my cat. :-) Good luck and enjoy. Leah

I go to Disneyworld every year and half or so. We started going when my mom broke her leg 12 years ago and have continued since. I love it! I go on all the rides except the rocking rollercoaster at MGM (did it once and then had vertigo and my family will not let me on it again) and the SPACE one that is a new simulation because they have had many people pass out from the multiple G's of force and then the feeling of no-gravity they get in the ride as well. I go on Tower of Terror because I am personally not scared by it and do not get any discomfort from it. I go on space, spalsh and thunder mountain and get nothing more than queasy (and that is almost never). I find that the worst thing at the park is standing and walking so I use a wheelchair. I bring gatorade that I buy from a store, I plan the entire day in advance, I often take naps, I get ice pops to cool down (although we usually go in the winter when it is cold), and I make sure to have lots of salt. I think the wheelchair is essential! you get to skip some lines too. Mostly, I have to say that almost all of the rides are like a slow car ride, very very easy on the body. Many are for young children. There are lots of fun shops, restaurants and movies to see. I love Animal Kingdom park which is an awesome zoo combined with a park. The ride to see the animals there hurts the back a bit and might cause nausea but I am fine with it- maybe bring a cushion or sweatshirt to roll up behind your back for it. It is definitely worth trying it! It is not scary or anything, just bounces, but there are so many animals that are roaming around. There are several paths of animals in their pens there too who look like they are in a giant field, not a zoo cage. I love that park. Also, if you can afford an expensive but incredible meal (one of the highest rated restaurants in the country), go to the California Grill in the Contemporary Resort. If not, then enjoy all the other things to do there, there is just so much fun stuff. Leah

Hey, I can only sleep on an incline now too. Flat beds make me feel like I am falling backwards and give me palpitations. I find that the incline reduces reflux and it stopped my waking up on my knees after getting out of bed every morning and passing out immediately after. I have reduced my palpitations at night, but still get them (I dampen the feeling of them with a stuffed animal or pillow against my chest). My back and neck have suffered from the position, but I think it is worth it. I did have leg swelling the first week and then my body adapted and I have been great ever since.

did you guys see the America's Next Top Model with the girl who passed out? She said she has had this thing with her vagus nerve for a while and sometimes it acts up and she passes out. Her faint was crazy as she had no warning and just fell flat backwards. It is strange to see it happen to someone else. I started watching when I saw the commercial and I really wanted her to win, but alas, she did not. It was interesting to see her talking about it and to see Tyra telling her to sit as needed.

I have heard very bad things about Dr. Kauffman...from other doctors! I know a few other ex-patients of his who told me awful stories too. If someone is having a good experience, then you are unbelievably lucky. I live in NYC and I actually go to a doctor in Baltimore because I went to Johns Hopkins U for a few years and I just liked him a lot. I have an Electrophysiologist on LI who is considered one of the top few in the country. His bedside manner is lacking, but he tries and he wants to empathisize, he just misses the mark a little. He is great, but I think he would want you to travel. His office responds quickly. Research St. Francis Heart Hospital and look up arrythmias and electrophysiology. I have another neuro at Cornell who I think is brilliant, but the least sympathetic human being on earth. He wants you fixed, so he will work hard for that. He also is not afraid to prescribe stuff or not to if you don't need it. He has read all of the research. However, he is a general neurologist, not a specialist in our field. Dr. Stewart at Valhalla will not see you unless you are under 19. he is a pediatrician and he already told me that he would not see me and I had just turned 19 a few months before and had been sick since the age of 15. He referred me to other doctors, including two of the ones I see already. You might want to look into doctors in Ohio, like Dr. Grubb and others at Cleveland Clinic. There are some good doctors in Boston as well. Beth- what doctor do you see and what does he/she specialize in?

Have you ever had kidney infections? I have had a bunch and now permanently pee protein, blood and leukocytes. I also probably have Lupus (most likely have it). You might want to read about the symptoms of Lupus and see if they sound familiar. I think they might fit with what you are describing. Also, don't get scared by what I am saying- there are several types of Lupus, they are rarely fatal and those are a forty year illness with long periods of time in remission. Also, there are a lot of new medicines for Lupus that can put you in remission or at least can slow or stop the disease for a long amount of time. If caught early enough, then you might not ever progress and will only improve. That said, look up Lupus and other autoimmune diseases online. LEah

Mine tends to run dangerously low and I have had problems (muscle paralysis and spasm issues) so I take potassium everyday and had to change my florinef dosage (it leaches potassium and calcium out of the body, but most people can compensate) and I get my electrolytes tested every 2-3 months. Don't let it get too low or too high or you can have horrible problems. Not to bring up political issues, but Terri Schiavo actually had brain death following a heart attack due to low potassium (thought to be from Bulimia so that shows that dehydration can cause some serious serious problems). You can also have paralysis, muscle weakness, and hr issues/palpitations with low potassium. Keep on top of this. Many of us do get low potassium, by the way, be it from florinef or chronic dehydration. Google Potassium rich foods or something similar. A banana a day helps a lot. Gatorade also has potassium in it. Don't let the potassium get too high either because that is also dangerous. Good news is that it is easy to correct when found before symptoms and the blood test is very easy and quick to give results. Leah

I forgot- i have gastroparesis, but I also have a rapid lower GI tract. They can go together with us. There is another medicine that I was told to try that helps relax muscles called Lotronex, but I got scared because I had to sign something for the FDA agreeing to side effects or something and I just was not cool with that. Zelnorm can cause bad diarrhea in people with rapid GI motility in the lower tract, which is why I take only 1 mg at a time instead of 6 or more like most people take. It seems to be more than enough for me. I can't take miralax though because of the possible problems it could cause in my intestines. I even take ultram to slow my lower GI tract and to help with the terrible pain I get in the lower GI tract just existing. Also, I get esophageal spasms that feel like a heart attack mixed with food poisoning, just awful. Leah

I use a very small dosage of zelnorm. I went up almost 20 lbs since I started it! I was underweight before and now want to drop a few of those lbs. I still have nausea a lot though. I also still get esophageal spasms. However, they are not as bad, not as often and I feel hungry and am now able to swallow alright. I was eating at least one liquid meal a day, then one larger regular meal and a few very small snacks. Now, I eat actual meals, although mornings still kill me so I eat a supplement bar in the first few hours after I wake up. i take zelnorm before meals and before bed. I also take both nexium and protonix and that gives me more than 26 hours of coverage instead of the 20 I was getting with protonix alone. I was waking up choking beforehand and had a constant hoarse voice. I also take NuLev as needed, the kind that dissolves on the tongue, and it helps the esophageal spasms if I take it early enough. Ativan helps the esophageal spasms too. There is also a diet that helps. I think you can google it. Your doctor should have it. This diet really makes a HUGE difference! There is a lot more to think about, but I think these points were most essential for my improvement. Leah

I get this speech problem ALL the time. I basically have no control over what word order comes out, how crisp my words sound and I often get related words mixed up. I also have a huge problem remembering proper nouns, especially names. It gets worse with migraine auras. I also get a thing where I have trouble understanding language with my auras. It sounds like people are just babbling at me and I am amazed that I can communicate at all. I can't think of the words in advance and couldn't tell you what I just said, but usually people tell me I made sense when I ask about it later. Sometimes my boyfriend tells me I sounded crazy or off, but he has lived with me for 2 years and either knows me well enough to know when I am sounding 'off' or speaking with an impediment of some sort or maybe it is the other people don't want to seem rude. It is a frustrating symptom that upsets me more than most of the others because I am a grad student in material culture and I am taking 3 seminars and a lecture class and language skills are...well, important. I know the stuff but can't share my thoughts articulately, ugh. Leah

I have ZERO anxiety with mine, don't even feel upset or bothered. I do, however, feel a little on edge in the wanting to do a million things but can't decide which thing to do first sort of way. I don't feel nervous really, just have an urge to do stuff. To me, it feels like what people call an 'adrenaline rush,' but with the added bonus of esophageal spasms and nausea. I usually have a rapid lower GI tract too. I get the shakes, flushing all over, but to an extreme amount on the face, headache with throbbing, shaking, can't stop talking (just compelled to do so, can't explain. I get this with migraine auras too), a million thoughts a minute, very high bp, rapid hr with palpitations, dizziness, insomnia that can keep me up literally for days and then I crash for about three times as long (that might be the worst for me now, not being able to sleep even though I am physically wiped), damp sweats to profuse sweating, trouble sleeping once I get to sleep, extreme thirst, sensitivity to temperatures, muscle spasms, possibly more I am forgetting. Later, I crash as does my bp and hr. My muscles feel like jelly as if I just ran a marathon and lifted heavy weights. I go from bright red to frighteningly pale. I usually have these in cycles and will go through several weeks of almost daily adrenaline release attacks or ones that could just stay for 48 hours or something. They will go away as suddenly as they came and start up again in the cycle of a bunch of them who knows when, but usually sooner rather than later. Mine definitely get worse with standing but are not always triggered by long periods of standing and I do not get them every time I stand too long, but once I am in the cycle, I have to be extra careful. I have to admit that I am aware of them since I have had them most of my life. As a student, I have learned to 'harness' these and try to write all my papers in these weeks when I am having the adrenaline surges, especially during the long nights and evenings when I cannot sleep. It is probably the only time I get a chance to feel like other 23 year-olds because I can suddenly do homework and actually stay awake during it. At the same time, these adrenaline rushes are awful, debilitating, frustrating, and extremely uncomfortable. I hate that I can't control the physical symptoms so I try to control and make the best of it by harnessing, but I still would rather feel about the same everyday. I feel like I don't have a typical 'me' day ever, just lots of different symptoms that combine at different times on top of a tired and achy body. (I am also not sad about this, just saying it like it is. I have learned to make the best of things after 8+ years). Hope that helped? Leah

I crack mine all the time too. However, I have got a terrible neck from my muscle problems related to inflammation from my Lupus/Rheumatoid Arthritis/Connective Tissue Disease (leaning heavily towards Lupus, but I am including all), so my neck causes me constant problems. I get very dizzy if I tilt my head back or roll it, I think we all do. It is too difficult for our brains to compensate for the rapid change in posture and then there are also changes in blood flow to the brain when you move the head in certain ways. I think we all have postural responses and that is why they call it Postural Orthostatic Tachycardia- change posture=illness, but that is my interpretation. Leah

I have the close together numbers more than anything else- my doctors all said it was a sign of dehydration for me. They were very worried about it and said that the more I stand, the closer they get. I was told it was a vaso-vagal action as well, but slightly different than the dropping bp that we usually get. I am supposed to increase salt and fluids with it and my florinef was supposed to help it (and did), but I have to admit that I am retaining an enormous amount of fluid right now, that or I got super fat in a short amount of time. Woman hormones are one thing that increases my bp and causes fluid retention at the same time while also making me have dizziness etc etc. I don't know if you take any hormones or if you have any hormone imbalances? I sometimes get strange fluctuations like low estrogen or high prolactin that seem to cause high bp too. Hope you feel better. If you find an answer, let me know- I really need it! I am suffering so much myself, but can't leave my grad school + work schedule right now because of presentations and giant final papers and stuff. Plus, I found out I am moving in TWO WEEKS! Thus, lower bp would my life better. Please help us all benefit from the improved health you are about to have. :-p Leah

Nina- I am going through the exact same thing right now! I am unable to sleep more than a few minutes at a time and I am feeling like things are going so fast, yet I am dragging. I am more dizzy with the high bp while standing. Weird thing is that my bp is dropping rapidly...when I sit! I am doing about 150/100 as well, give or take 5 points on each number. Then, when I sit, my bp goes to about 110/60 (perfect, but a 30 second swing of 40 points on each number). My hr is still increasing a lot while standing. Of course the flushing, pounding in the chest, babbling non-stop, insomnia, muscle spasms, nausea, etc. I find that the hot shower technique often works (makes you dizzy but lowers the bp. I sit then lie down afterwards with only a towel on and wait to cool down. The bp usually does not increase again because it is dangerously low hehe). I find things like tea, resting with feet up, taking frequent breaks and actually eating a lot of salt helps. Actually, increasing my salt intake even more helps to stabilize my bp so there are less swings and then less stress on the body so less release of adrenaline. The numbers will very slowly creep down. For a rapid diuretic, use caffeine in small amounts, but too much will also raise the bp with this problem and give you palpitations- it is a very precarious balance. I heard that cold washcloths on the neck help some people. I also sleep with the head of my bed up so that there is no sudden change in bp when i get up in the morning. Any large stress like that makes my body compensate with a ginormous adrenaline release, ugh. I gave up and took an ativan a few hours ago. Of course, I am still up after only a few hours sleep cobbled together throughout the day and I also walked like 4 miles looking at apartments in Brooklyn. I think I got one though, one with a pretty garden! Anyway, I take an extra beta-blocker when my bp is that high because my doctors told me to. I take sectral, a beta-blocker that also blocks isoproterenol, a form of adrenaline in the body. It helps, for a little bit. Oh yes, you have to drink an amazing large amount- drink until you pee every hour. I drank 6 liters Saturday and have done almost as well the last two days. I am still not peeing very often, so it is clearly not enough for me. There are some breathing exercises to do where you breathe in slowly through the nose over a count of 4 and then out for 8 through the mouth then slowly increase until you are breating in for a count of 8 or 10 and out for 14 or 16. Try to empty your brain or think of something calming at the same time. (no, this does not work well for me either, but it is worth a try and it does help a little). Remember to breathe normally in between the big breaths. Take 10-15 minutes to do this. I find that light yoga stretches help but hard cardio/weight exercise is making it worse, much worse. My recent attack of high bp is probably related to my dentist appointment on Saturday. he tipped me back to see my molars and I felt like i was completely upside down, oy. It was terrible. then the scraping and the other junk and I had pain, spasming, stress, postural dizziness and I was not able to sleep that night before either, so a bad combo all together. Sorry that my suggestions are very basic, but I have not found that much that helps other than time and meds. The hot shower is my best defense against the adrenaline stuff. I sit the whole time and make sure the room does not get hot. It is not for me to get overheated but for my blood to get flowing better. It helps my migraines too. You can try just getting your feet warm in the bath and your hands warm under the tap- it works quite well, but not as well as dipping the head and neck in warmth. some find cold on the neck and face great when they have flushing. depends on related symptoms. Hope I helped. Sorry for babbling. Leah

So weird thing for me is that I definitely have hyperadrenergic POTS that developed slowly starting from infancy. However, I got mono in high school and developed NCS that was severe for a while and has improved somewhat with therapy. I have recently been diagnosed with Lupus. I think that I do have two very different responses depending on how I am feeling and what I am doing. Sometimes my bp shoots up at first when I stand. Sometimes it stays the same or falls. My heartrate always increases. I have NEVER had anxiety, but I have tremulousness, cold, sweaty extremities, true migraines with a terrible prodrome (and starting in infancy) and high bp at times. I think I may be the person with primary hyperadrenergic POTS who then developed a secondary type autonomic disorder following a virus. Why wouldn't it attack a place that was already affected? I wonder if that makes sense? My docs have always said I was different. I wonder if all of us can be categorized? I feel like everyone is different and it is hard to delineate since I think some of us get adrenaline responses with secondary POTS. hmm. Leah

could be potassium, but it could also be a sign of blood pooling and severe dehydration. I had these cramps and they were excruciating! I started Florinef and gatorade and they went away. I also have had very low potassium and got similar cramps with that, but the low potassium occurred at a different time and was cured with pills and a banana a day (plus raisins and some other high potassium foods on a regular basis). Try keeping your feet at heart level and see if that helps. Keep them there for a while, like 30-45 minutes, and then you can see if it is a blood pooling pain. Leah

yeah, I also get it when I lie down and lift both my legs up- I actually black out if I lift them more than about 30-45 degrees. Dr. Khurana said this is a particular POTS thing- a sign of true POTS issues. They just started studying it. You have to remember though that the name is POSTURAL Orthostatic Tachycardia, which means that changes in posture can cause trouble. I think the arms about the head is one of them. It is related to changes, particularly rapid changes, in blood flow. Arms or legs up, blood drains and the body goes crazy. Lucky us. I went to a pilates mat class last week and it was great because we stayed on the ground the whole time, but I stupidly forgot about the leg things and out I went. I came to quickly, took a drink and continued. The teacher told me I could try this leg lift thing where I put my legs in a diamond shape (knees bent, heels touching, feet turned out) and lift only enough to get the feeling of the muscle strain in the thighs and abdomen. I did not pass out and did well actually. I wonder if there is a modification for the arms? I wonder why this change made a huge difference too. Leah

Hi, I just got diagnosed with Lupus last week. I was expecting this but not completely sure which connective tissue disease my dr. would say. My blood tests are not conclusive, but I have had the butterfly rash more consistently now, like the whole month instead of a few hours at a time. I have finger and foot deformities and a knotted up neck that is starting to affect the rest of my body. It was imperative that I try something more aggressive. They put me on Plaquenil because they said that the side effects were less mild than other meds, i could go into remission, and it is safe to use in a woman who wants to have children. I heard quinine is actually worse to use (from Lupus board people and what I read online) because it kills the stomach and eyes even more. My side effects thus far have been mild- queasiness and acid in the throat (I get that anyway) and a few rashes in strange places (think armpits that itch because there are huge lumps all over them. Benedryl cured that one fast though). I have already had some improvement. I am still in so much pain and had the flu all week, but my boyfriend said that he can feel the bones in my neck for the first time in over a year (due to swelling, edema, cruchies and other unknown bulges) and I look less swollen. My rash was interfering with my eyelids and I was having trouble keeping my eyes open. My face looked like I took cortisone because of the swelling I was having earlier in January. Now, i look more like myself. I still have so far to go and I pray I can get there. I hope that this Lupus diagnosis will be a positive because maybe I can have a chance for remission. Unfortunately, I have been peeing blood and protein for more than a year and they just dismissed it since it followed a kidney infection. I have a family history of kidney failure and half of the people with Lupus get some sort of kidney problems. That and having babies are my biggest concerns. (I want to be a mother worse than anything in the world) I think that my team of two of the best rheumies in NY will help me manage my symptoms and maybe even improve my life! Yeah, always go for a second opinion- it really helped me achieve a diagnosis and a plan for care when I had otherwise reached a deadend. My care had become quality of life and drug me up. Now, the plan is add one drug so I can take away like 6 or maybe more! I hope so. I am still waiting for my blood tests to follow. My rheumie has been watching me for 5 years now and has seen me every 8 weeks because he figured something really strange was happening to me. His care and concern has made me feel better about my care in general all along. I hope you find an answer and a solution. I believe that many of us have POTS/NCS as a secondary disorder, be it post-viral or autoimmune or any other number of diseases that cause autonomic dysfunction. Maybe one day they will understand our illness more. One other thing- I have all these health problems that the Lupus board people feel terrible for me for having. It is a crazy thing because they are common with us, like celiac/wheat intolerance, gastroparesis, rapid heart rate, and many other things. I do not have some of their things yet, luckily, and maybe will not, but they feel equally bad for me. It is an interesting thing. I have so so many of their symptoms and can relate to so much of what they say, but the esophageal spasms and neck pain are here too. I have these two illnesses that go together, but dysautonomia is so little understood. Apparently, the autonomic nervous system really does get attacked in autoimmune diseases more than originally though (I read trascripts of some interviews with doctors to see if there were any links and it was fascinating to see that said). Sorry for blabbering. I was not sure how to share my new diagnosis with everyone. I am pretty bad off as far as the Lupus like symptoms go, but my POTS seems to be under slightly better control. They flip-flop now so that I am in a flare with one or the other and no free time. I used to have massive flares of both at once and then some free time, not much, but some. I am not sure which is better. I do a lot more now and can function at a higher rate, but I feel like I suffer 100% of the time, just sometimes it is a manageable suffering (with the help of oh so many meds ugh). Leah

Neurontin has been a lifesaver for me. I had progresive muscle weakness on my left side and severe daily migraines until neurontin. Now, I am doing much much better. No longer using my cane daily. I am having a bit of a setback after two years on Neurontin. Breakthrough migraines, but I am a grad student, stressed and have had a bunch of secondary health problems. My neck is horrible too, the worst that my masseuse and my two rheumatologists have ever seen! It is also due to constant muscle spasms. It is quite painful! Neurontin does not get rid of the spasms, but it lessens the pain. My standing endurance is much better on neurontin too. I take 1200 mg 3 times daily. I am 23 years old and have had dysautonomia for 8 years. Leah

Happy Chanukkah! I made myself latkes last night too. Mine were a little too dense because I used oat flour and it caked up. They tasted right though, so that is the important part. I only made enough for one person and I used a stool. It actually only took about 2 mintues to grate the two small potatos. I have an electric menorah for the first time in my life this year because I was afraid my kitten would kill us. I could not take it, it just did not feel like Chanukkah, so I bought a very cheap, sort of ugly 'brass menorah' and I lit candles! Mmm, I love the chocolate gelt and the yummy latkes with applesauce. I will have to make them again. Jews make up a widely disproportionate amount of patients with familial dysautonomia (the congenital one that kills children by the age of 5. It is different from ours). It is a curious thing. I had been told by a doctor that there are a disproportionate number of Jews with POTS too, but I am not sure that is really the case. You have to think about where the Jews live and where the good POTS docs are. Then, think about other population trends, etc. Anyway, Happy Holidays again! dreidl, dreidl, dreidl... -Leah

Julie, My favorite is when they get mad at you for asking them to do their job! As if my health and my life were less important than the phone call they were making to their friend. Of course, some doc's offices have great receptionists. My new rheumie has a sweet, helpful receptionist. My PCP has a person who does not know the alphabet and another receptionist who always tries to tell me that there is some reason or another why my doc does not feel like seeing me when I am there for my appt. (either I am 30 seconds late or I called too recently or she just does not feel like filing my stuff). Anyway, I hope you continue to feel better. I am still waiting to be able to breathe well myself. Good news is that they usually flag bad tests results and call you on their own within like a week. The receptionists might have nothing to do with the nurses and the nurses might or might not call to tell you stuff soon. I usually have them mail me the results when I get blood tests. I write it down on the form at the lab or at the doc's office. I am just sick of not hearing about bad things until two months later. Leah

Hey, Thanks for noticing my post- your concern means a lot. I have not gotten any of the recent vaccinations because my neuro said that it would be bad for me. I think that might be accurate because I had to get a tetanus vaccine over the summer and I was very sick for more than a week with stiffness, fever, nausea, etc. and that is just tetanus. I do get a complication of some sort every time I get a cold, so I worry. I hope I do not also get the flu later, that would be awful. This was pretty lousy. I also still had to do all my school work, with a two week long fever and difficulty breathing and dizziness and so on. I was so mad! I was told pneumonia and acute bronchitis are going around in NY right now. I would suggest trying to take precautions like frequent handwashing and staying away from crowds when possible. No sharing of anything with people I guess. As a student in a major city, it is hard for me to avoid these extra illnesses though. Leah

Sounds like the same thing I had the last two weeks. Bronchitis became chest pain and trouble breathing. It turns out that i had pneumonia. A short course of antibiotics, breathing treatments and an inhaler every four hours has helped A LOT!!!!! I had a fever and bad taste in my mouth for two weeks. The anitbiotics killed me too. i got IV fluids and that helped. Go to the ER. It will help your worries and they can do all those tests at once + they freak when they hear difficulty breathing and cough. You need to get the junk in your lungs out. Anyway, I got a pulmonary function test, chest X-Ray, and other things, the whole workup, plus fluids in the ER. It was only 6 hours and they did not have me sit in a waiting room for a single minute of that. I brought my holiday cards and ipod and chatted with my nervous mom. It would help you to repeat the X-ray to at least calm down. They will admit you if they think it is serious and then none of this waiting at home garbage. Some drs just are too lazy or too scared of lawsuit to even bother. Usually it is the lazy thing. I was having horrible chest pain different from the usual POTS stuff. I went to the ER because it was Thanksgiving weekend and my doc's office took a five-day weekend, (nice, right) and the urgent care closed do to budget issues. It was a smart thing for me to do. Pick a good ER though, like a teaching hospital. I am not better yet, it is a long recovery, but you need to start somewhere. Bad taste in the mouth usually equals bacterial infection, by the way. I had spotting on my lungs. I hope that helps? Leah PS. You could have nothing but a nasty cold, who knows. You might not have what I have. They said at the ER that they were having a huge number of cases of healthy, young people with this same thing, so unhealthy people like us....

When I first got sick, I lost 25 lbs fast eating like 3500 calories a day. I put some back on, but not much and then struggled for four or five years to keep weight on and ended up 20 lbs underweight for a while. I am petite, 5'4.5" so 20 lbs under was a big deal. I am now trying to lose weight because a medicine I took made me rapidly chunk up. In a few months I went from drastically underweight to a little overweight. I am now only a few lbs over, but I would like to have more control over my weight and I seem to have none.