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Why can't the doctors help me!?


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I am writing this because I don't know who else to turn to, and I figure I should share my pain/story with people who may be able to relate or have any advice.

In February 2004, I went to the doctor to get a cholesterol check (it runs high in my family, so I get it checked every year). She ran a complete CBC test as well and when the results came back, she said my cholesterol was ok, bu I had remnants of a virus and asked me if I had been sick recently. I told her 3 weeks prior, but I felt fine. I had a friend who visited me and I believed I just caught a cold from him (his doc said he had some cocksackie virus).

In March 2004, I noticed that my digestive system wasn't functioning properly (it was very slow). I have always been active and been able to put away lots of food (my favorite thing to do in life is eat! :) ), but work had kept me away from the gym. One night, I went out with some friends who told me that I needed to "destress" from work, especially since I had had some issues with a co-worker who was really upsetting me. On our way out, I noticed that I felt really full and nauseous. I was only out for an hour when I came down with a serious bout of diarrhea and vomiting. But I didn't "feel" sick. . .normally when I get symptoms like this, I feel weak or worn out all over. Needless to say, the next day I was fine.

But on returning to work that next week, I noticed that everytime I ate, I would feel nauseous after about 5 hours (and after the nausea subsided, I would get these cold spells). I went back to the doctors and they tested me for gallstones, hiatal hernia, and did extensive bloodwork. The results came back negative, with the exception that my bloodwork still showed a virus and elevated amylase and lipase levels. So they told me it was viral pancreatitis. I couldn't eat anything. . .I had to go on a liquid diet for about a week, and eventually, I couldn't tolerate that either. I was always dizzy when I stood up, my heart would pound whenever I did the slightest thing, and I was overall very weak. I ended up at the ER because I was dehydrated. They did bloodwork and said that I didn't have viral pancreatitis. I looked at the paperwork and the WBC, lymph, amylase and lipase levels were about the same as before. I was confused. Anyway, the problem didn't resolve itself, I lost 25 pounds in 2 months, the virus stayed in my system until June 2004, and I think the doctors were sick of seeing me, so they told me to go to a GI doc. By then I was having severe constipation (could not go for 2 weeks although I was on metamucil, reglan, and a stool softener), pain on my lower left side, chest pains, trouble sleeping (nausea would wake me up), numbness in my arms upon waking, and what felt like heartburn. They did an endoscopy (to test for ulcers, food allergies, etc), colonoscopy, and gastric emptying scan. Everything came back normal with exception of the scan . . .I digested a little slower than normal, but the doctor said it should resolve itself and to take Zelnorm (I think he said that just so I would leave him alone). Nothing helped. There were times I would get in the shower and have to run out to lay down because I thought I was going to passout. My heart would beat really really fast and I would get a headache and ringing ears. This used to happen to me every once in a while when I would play sports, like run from one base to another, or play volleyball, or go to the bathroom in the middle of the night. I got a second opinion and they told me it was anxiety after I told them my symptoms seemed to get really bad after the slightest bit of stress or anger. I really felt that there was more to it than that, so I went to my gynocologist to see if it was hormone related. By this time, I noticed that my symptoms would get so bad about 1-2 weeks prior to my period and I was lactating (first time it happened, I was in the middle of using the restroom and I broke out in a cold sweat and thought I was going to pass out on the toilet. Next thing I know, my shirt was wet). He did some bloodwork and an MRI on my pituitary gland and all my tests/hormone levels were fine, except for the prolactin levels. He put me on these pills, which made me feel extremely sick, but eventually, the levels went down. After that episode, on came the stomach issues (actually, they never really went away) and low blood pressure upon standing. I tried to keep myself hydrated by drinking at least 8 glasses of water or juice, but noticed that no matter how much I drank, I could barely go to the bathroom. I went to ANOTHER doctor who was sort of helpful, and he tested me for lyme disease, parasites, and an abdominal aneurysm (he felt around my stomach and he said I had a strong pulse in my abdomen, which I can actually feel right after I eat now). All came back normal. Oh and I am so far not diabetic according to several doctors since my hemoglobin A1C has come back normal 3 times (side note: my mother is diabetic and they refuse to do a glucose tolerance test on me because they clain the hemoglobin A1C test is an excellent indicator of my glucose levels over a certain time). Although I have been able to eat a little more now, but after I eat, my heart beats fast, and then once my stomach is empty, it beats really REALLY slow. At some point, I started to believe the doctors about the anxiety, but have been on every pill (lexapro, zoloft, sarafem, muscle relaxers, ambien) and nothing seems to work. I went to a cardiologist (did an ECG, echocardiogram, and event monitor. . .all were normal), an endocrinologist (blood and 24-h urine sample to test my cortisol/andrenaline levels. . .all were normal), and a neurologist (he just looked at me like I was crazy). I started doing yoga (makes me absolutely exhausted), and getting massages (makes my arms go numb and give me chest pains mostly on my left side by my collarbone) to try to handle stress (since it is so hard for me to cope with it now for some reason). My friends at work tease me because there will be times when I get up too fast I lose my balance and almost fall over, or I get really dizzy after a meal. They also joke around because I always have my little space heater on, even when the building is warm to them. My parents think its all in my head. My doctors have run out of options, and my boyfriend tells me that everything will be ok. I am not getting any help or support and really need someone's advice. My biggest concern now is the fact that my heartrate is so high and I can't eat properly. The only digestive aid that works for me is lying on my back. For some reason, my food digests normally when I do that. I really really really just want my life back. I want to be able to play sports and go out with friends without feeling ill. If anyone has experience some or all of these symptoms, please write me back!!!!!!

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Welcome to the site.

You sound a lot like me, when I first got sick. I have probably read a dozen or more stories just like it.

I would suggest looking at our doc list to see if you are near one, if we know where you are we can suggest a doc. We also have a what helps list and what doesn't help on the left hand side of the home page.

My suggestion would be to see an elecrocardiologist and have a tilt table test done. that is the best place to start.

again welcome,

blackwolf

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i know how it feels to be doubted by your loved ones, and not to be taken seriously, that is the worst feeling, you have found a great group of people who are a great source of help and support, i hope that knowing you are not alone and that alot of what you experience is similar to what many of us go thru will be a comfort to you and give you some peace of mind, i really hope you find a doc who is willing to help and be supportive, and dont ever doubt yourself!

radha

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Hi and welcome,

I would suggest to them that they do orthostatic blood pressures. This done over a week or even a few days will give info. The tilt table is they say the "gold standard" in diagnosing dysautonomias. I had a lst of diagnosises of 14 after tilt was 3. Problem is if you don't kiss the pavement(pass out) it takes longer yet to diagnose. Also people with dysautonomias often break out in sweat when having a bm, it is exercise for us!!!! Go figure.

Peace Miriam :)

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Hi, sick of being sick (I know where you're coming from!), and welcome to the forum.

I have had all of the symptoms you describe. I just returned from the Cleveland Clinic after having a tilt table test done. It showed that I have POTS. In a few weeks, I go back for tests to try to determine what's causing it.

It would be good for you to take a look at the list of symptoms that Dr. Grubb put out for those with POTS. Go to www.potsplace.com, and you will find a great deal of information about POTS, along with that handy-dandy list of symptoms.

It would be best for you to find a doctor who specializes in Dysautonomia / POTS. I believe this website offers a list of physicians.

While you're waiting for tests, keep these things in mind: You are not crazy or a hypochondriac. Should you have POTS, which it very much sounds like you do, it is a real condition that causes anxiety, yes, but it is a real physical condition that needs to be taken seriously and dealt with. Your friends and family need to become informed about POTS, as well, so that they can be supportive of you instead of adding to your stress and doubt. POTS is not easy to live with. You will need all the support you can get.

Continue to ask questions and do research yourself, so that you can find what works best for you in coping with your condition. You will find, as you read, that many of us utilize the same natural approaches that seem to help, such as adding salt to our diets, drinking Gatorade or Powerade, drinking plenty of water, wearing those nifty tight stockings, not sitting or standing for long periods of time, taking frequent breaks in our activities, staying away from caffeine and alcohol, avoiding heat (hot showers or hot days outside), certain medications that your doctor will discuss with you, etc.

Please know that you're not alone. There are thousands of people out there who are suffering with POTS. Most have symptoms every day, and complete pots spells after suffering a virus, an injury, surgery, the birth of a child, or an extremely stressful period in our lives. Many have a very hard time just getting through the day, or night (I have a really hard time at night). There's no "cure" for POTS, usually, unless you do find what has caused it and it is something that can be fixed. But, usually, it's something you learn to deal with, AT YOUR OWN PACE.

First, get to a doctor who knows about POTS. Have a Tilt Table Test done to verify your condition. Then, you can begin to work with your doctor on what works best for you to deal with the condition. As I said before, as you learn about your condition, educate those you are closest to about it, as well, so that they can be as supportive as possible. POTS is very real. It is debilitating at times. It is scary. But, you can live a fairly normal life with it, once you learn "Yourself."

Hope this helps. Keep in mind, we're here if you need us. Most of us are still learning, too, but we're more than happy to share what we know.

Blessings to you, honey. Hang in there. :)

LindaJoy

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You Poor Thing,

It does sound like you need a ttt test, if you read my post from yesterday I have some of the symptoms. I have had a "virus" of some kind all week, and by heart rate has been way up. I barely made it through the shower the other day! Did the Gi test you for ulcerative colitis or Chron's disease. Did they say anything about Irritable Bowel Syndrome? Have they ever tried Xanax or Klonopin? Or a beta blocker to slow your heart rate. I know it is hard to get help. One doc wanted to do a ttt, but because of insurance reasons I had to go to a cardiologist, who did tests, and another neuro who said I didn't need one, because in his office I was fine. Anyway i rambled as long as you did, i know how frustratring it all is. Good luck, keep trying, try the good doctor list.

Good luck!

PS. I don't know how my name is on the post above, something is going crazy with my computer today, sorry about that everyone.

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Do not give up! I do not have POTS, but do have tachacardia, and have had some episodes feeling like I was having a heart attack. It took three doctors before they finally realised it wasn't in my head. Also, for years I had severe migraines and none of the doctors I saw did much for me. If I woke up one day every few months without a severe headache, it was a rarity. I went from doctor to dentist to optomotrist, etc. My dentist's remark to me was "even hypocondriacs feel pain". I walked out of there crying and so upset. At the time I had four small little boys and each day was a nightmare. I finally found a doctor who took me seriously, and he turned my life around with trial and error. I also went to doctors for two years for horrible attacks of pain in my stomach. They all did upper GIS, but nothing else. Couldn't find anything wrong with me. I finally went to a gastorenerologist, and he diagnosed my problem as pancreatitis and gallbladder disease. I was very thin, and no other doctor saw what he did. After my gallbladder came out, I was a new person. I had bladder cancer five years ago. I went to my GP and told him I had blood in the urine. My urinalysis was clean. I called him back the next day and told him I had an episode of pure blood the night before. I had to insist that I wanted to go to a urologist. Ten days later I had bladder surgery. If I had not insisted on a referral, I would not be here today. It was a huge tumor and very aggressive. I am sorry for rattling, but I feel you should never give up and push until you find the right doctor. God Bless, Linda

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Welcome to the site and the wonderful world of pots. I had a tilt table that was negative, but still have ans problems. I do want to say, that I told my gi doc about my pulse pounding in my gut and he said the aorta lies over the stomach. You get a food bolus in there that takes forever to get out and it pushes up against the aorta making it feel like you must have an anuerysm. So that was a relief. My gastic emptying time is 163 minutes, with the norm being about 40 to 50. You have entered a surreal realm where everything is normal or borderline or nothing to worry about or all in your head. In a way it can be in your head, if it's nuero cardiogenic, but not because you are crazy. This is just an illness that can drive you crazy, with frustration. *I have never had all the specialized exacting tests that many people on this forum have, but there is no doubt I am really sick. And you must not let people who don't support you, unfortunately including family, invalidate how you feel. Who on earth would really wish something like this on themselves. Man if I really wanted to be sick, I'd have something you could actually figure out, it would be easier to cut your arm off than have all the grief that goes with this. So hang in there and hang on to us and we'll all support each other. morgan

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I am with you Morgan, who would wish this on their worst enemy. Just the process to go through eliminating everything else it could be has taken 3 weeks in the hospital over the last year. I would pick something easier if I were going to make it up :P . Hang in there!!!

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