all4family

Oh wow Ernie, I am really sorry for all you have been through. The one with the sex is just abusive. I know what you mean about the faking thing. I was told that I really believed I was sick, and that my own mind was giving me physical symptoms because of the way I was thinking. So I really became sort of angry with myself, and when I was feeling my worse I would talk to myself very negative. I would kind of get mad at my body. Although I really believed they were wrong, and it wasn't all in my head those nevative things stuck in my head, and when I wasn't feeling as strong would bring me down. When I showed my sister who is a nurse the colour urine I had (it was dark rusty brown) she said yeah....whenever I am anxious I can make myself pee rust! Then she told me that she had seen a lot of pee in life, but the only time she had seen pee that colour was in people on on dialysis dieing. How awful that that made you suspect your husband. Did everything work out ok on that? I am very glad you went to NIH, and got the proof you needed. It's awful to go through life thinking you don't even know if you are thinking right or not. Can you tell me what is genetic pots? Is that familial dysautonomia? I shared my family history of my dad that he had "low blood pressure, and fainted all the time." And the doctor seemed very interested and took notes, but didn't say anything. I don't know a lot about his history, and we don't even know about his relatives because he was possibly adopted by his father, but we really don't know. But his mother and I think my mom said his sister or aunt used to have the same problems as him. So I am wondering if it could be hereditary. I'd like to know so I can help my kids maybe to avoid something that might start it in them. I don't know what I'd do if they got sick like this. That would just devistate me. Suzy

Oh my gosh Ernie. What a horible time you have had. So they were saying you were faking the fainting, or just getting yourself so worked up you were fainting? I was also accused of making up that I fainted, because at first only me and my husband was there. And was told that I just get myself so worked up that I faint! Or I loved this I had sonomitization, which I was not even told this, I read it in my paper. And I understand how you feel about the self perception and self esteem. It is hard to keep telling yourself that you are worth something, when someone else keeps telling you you are crazy. I took drugs that made me sicker trying to cure my "mental" illness. I went to counseling, and even bought a 500 dollar program to try and feel better. But I just felt sick, and 500 dollars poorer. What is NIH? Sorry I just don't know all these things yet. I am so glad to see that you have overcome so much. You had to overcome physical problems, as well as try and defend that you didn't somehow "want" these problems! I am glad of your determination, and it gives me so much courage. I wish they would learn to say that too. It sure would make it easier to deal with being sick if you didn't have to feel responsible for it!! Suzy

Hi Dawn, I am sorry for the way you were treated. But I am so happy that your husband stood up for you. I am glad you get treated well now. It really doesn't help when someone is already suffering to add condesending emotional pain to it. Good for your husband. I applaud him! Thank you for your support. Suzy

Hi everyone, Thank you all so very much for all the loving support and encouragement. I'm sorry I haven't responded sooner. I tried a couple of times to get on, but kept losing my internet, as I was on the road. Does anyone else have to lay down in the car if they are going very far? Ernie, I can't even imagine having Doctors think your nuts for 30 years! I only went through it for 5, and I was really starting to believe them! I am so glad that you stand up for yourself. And I agree with you. I think that we are all human, and all deserve human compassion. Whether doctor or non, whether male or female, whether crazy nut, or misunderstood person with an illness. That's why I am so glad I came here. When something like this happened before I would take it out on myself. Call myself stupid, and get truly angry with myself that I couldn't just get over this "fear". Last night I got my dignity back. I realized if everyone here has this much understanding, and have all experienced similar things that maybe the problem didn't lie in me! Macks Mom, Thank you thank you thank you for the sorrys. The research article you are talking about is the one posted on the mast cell topic you posted? You are the one that posted that one right? I have read some on it, but have to admitt I am still feeling a little confused. I have had so much information come at me since last Tuesday or wednesday I think when I got my diagnoses. I think I am mixing some things up. What is the difference between MCAD, and mastocytosis. I will have to go back and read some more, maybe more will sink in this time. Thank you for reminding me of his name. Dr PeaBrain! I had forgotten it with all the lecturing and all, and I know how they like to be addressed by their "official" names! Casper, I am so sorry you gave up trying to get to the bottom of this. I am glad though that you are working with another doctor. Even if she is moving slow. I love what you said about the x-ray vision! I had a ENT dr look at me for imbalance once (before I had even heard the word dysautonomia)and he walked in and before even looking in my ear told me I need a good brain drug. That it is nothing to be ashamed of. He's on them. He said he had "felt it" when he walked in the room. That you can get a feel for someone just by walking in the room! Gosh I wish I had come to him earlier...he could have saved me a lot of time and money, he could have probably healed me just by walking out of the room! (I felt better anyways!) And thank you for telling me I'm not a lesser person. I am feeling so much better with all the encouragement I have gotten here. Sara, yes you are right . It doesn't fit into the norm. (I never did anyways!) And yes I think I need to start taking my husband again. I was until a Dr yelled at us in the hallway about not needing everyone there. But he is more than willing to come with me. He was so angry with this Dr., and he is a muscular bald dude that can be a little frightening if he gets angry ( which he does). I am a little concerned someone will say he was threatening them. Because he says it like it is. He would have told that Dr that that was bull$%! He is not a violent person at all, he just says it like it is. But obviously I need some backup, or I will just give up again like I did before and sit at home and suffer in silence. I am so sorry what that Dr did to you. That is just horrible!!! What ever happened to the hypocratic oath "first do no harm" That must have been just awful for you? Is pain a symptom of pots? I have horrible pain. And my bones pop and crack everywhere even in my chest. Is this a normal part of pots? I just assumed it was. thank you for the welcome, and thank you for the support. Susan, Thank you for your kindness. And can I say good for you for standing up for Sara! It takes a lot to do that. It would be nice if we weren't "trained" to be so polite and never interupt the Dr. It is not about the Dr. (at least it shouldn't be) The Dr doesn't have to feel the pain. The Dr doesn't have to stop living his life. He will still go out and do what he wants to no matter what your outcome is. So we all should be able to speak freely with our Drs. too bad it doesn't always happen that way. And yes I am still laughing at what EarthMother said. I read it to my husband, and he is still laughing about it! Sophia 3, Thank you. And I really like your idea with the clipboard! Maybe I could get a clip board as big and thick as a bat!!!! Thank you for helping me have some humor! With all the great comidians on here we should go on the road! But we would really need to take an arrogant Dr with us for the motivation!!! Thank you I will be more kind to myself. I just hope I can regroup before I go back! With the support here though I am sure I will. Flop, I am so glad you have your dad to go with you. It is a lot to try and do these things on your own, and it is so important to make good decisions. Do you have to travel far? I will have to start taking notes, or maybe just bring in a little recorder. That I am sure will shake them up. But so many times I walk in the office, and forget everything I wanted to ask, and walk out and forget everything I was told. I think what you said is so true. Some are good clinicians, some are good communicators, some are good at both, and those are the ones we tresure. Dawn, I read yours, but it is not on this page, and I want to remember it right, so I will post in one seperatly. Thank you all for being a community that cares so much. I can't even begin to tell you just how much this has meant to me. You all have made a very big difference in my life. Just being their and understanding. Sharing your stories and your humor. It has given me my dignity back and made me feel stronger. Strong enough to face another day of being sick, and another day of Drs. (but not for a couple weeks yet. Thankfully). (((((((((((((((((((((((((((((((((((((((((Healing hugs and hugs of thanks to all of you))))))))))))))))))))))))))))))))))))))))))))) Suzy

Thank you Lina, good idea the broth. And to think I've been buying the reduced sodium broth for my health. Thanks Suzy

Thank you Ernie. I was just reading that you had had a really good experience with your colonoscopy no versed. And that you had been treated so well. I am so happy for you. It makes all the difference in the world. I am scheduled for a EGD no versed on Feb. 17. I am very nervous that I will panic and tighten all my muscles, and they will have to give me some anyway. That takes courage to go through a colonoscopy that way. I have avoided that test too because of the versed. I am so glad it went well for you. Take care. Suzy

I totally second what Earth Mother said! I always have someone with me. I'm a nurse, and have had tons of confidence talking with physicians until they stopped believing what I said about my own body. I think some docs have to have all the answers, and if you don't fit into their picture then they either dismiss your symptoms saying they don't exist or that you're exaggerating. Today I went to pick up my skin biopsy to take to Mayo tomorrow and the dermatologist said something about my POTS diagnosis like "you're seeing so many different doctors they can't keep up and they're just labeling all your symptoms." Like it was my fault that I was being sent to so many different specialists! I was feeling really run-down already and this almost pushed me into tears, but I put my head down and forced myself to concentrate on anything but what he said. I knew if I gave in to tears, it would wear me out for the rest of the day and I had to pack and clean still. I just needed the biopsy, and left without saying anything. This guy has been patronizing on other occasions, but I just needed him for this biopsy. Either way, keep believing that there is someone out there who can help you! It will be so worth the battle when you get some answers from a doctor who is willing to see the whole picture of your symptoms. You have to keep fighting for yourself because no one else really knows your story, symptoms, etc. You are your best advocate! You have been through so much. It must be really hard to keep your chin up and try more doctors, tests, etc. I'm glad your husband is willing to help you through this. Please keep looking for answers and treatment! Hi Thankful, It's so sad that even those in the medical field have problems talking to drs. I haven't fit into a picture of anything since I was sick. Until this dysautonomia diagnoses. I once had a neurologist say to me when I asked about my fainting."I think you tend to be a little dramatic about your symptoms." It's fainting. It is a little dramatic for the person fainting. Especially if they don't know why. I'm so sorry your dermatologist said that to you. That is what my allergist said about the skin biopsy when he asked me if I had seen a dermotologist. He said yeah there are a couple of specialists you still haven't seen. Like we really want to be going to all these doctors! What did we just get up in the morning and say gee...I'm bored today maybe I will go get a biopsy of my skin! And while I'm at it a colonoscopy would be fun for next week! I am so happy you didn't give in to tears! I will think of you if it happens again(and EarthMothers humor)and I will try not to cry! Thank you for the encouragement. I am so happy I have found this site. Suzy

EarthMother, Ok. Now I'm crying harder than before! I'm also wetting myself! It's painful to laugh that hard!!!!! Thank you for the sense of humor in all this! Oh how I wish I could go back and do today over with the helpful advice you gave me! You'd think I would be used to drs thinking I'm totally insane! Thank you for the congratulations. I hadn't even stopped to think hey I did get the test done. And you know you are so right (in the most hysterical way) There seemed to be a lot of tension between the Dr and the resident. She was a young woman, and seemed really on top of things. Maybe he felt threatened. I will certainly be bringing my clipboard and bic to any more appointments I have. I will try and remember my sense of humor too. Thanks for the laughter...yes I'm still laughing Suzy

I assumed he was just an ignorant doctor, it's even worse if was actually qualified! I'm so sorry about that. There are some resources on the net for finding the right docs, but for mast cell I'm ignorant on exactly where. If I had time, I'd look for you, but I'm already too nauseous to continue on my comp for the rest of the day, so maybe later I can help you out if I have time. Luckily, someone on these forums recommended my doc to me, so maybe you can make a post about your location and ask if anyone has seen a good doc in your area? Thank you Melissa for taking the time to help me even when you weren't feeling good. The DR I saw today was only an alergist. It is the one that diagnosed me with dysautonomia that I think is a dysautonomia specialist. I thank you for helping me, and I sure hope you get feeling better. Suzy

Thank you so much Maxine. I am so sorry to hear that you had such a serious problem in your family. That is terrible. Yes he was the idiot, but for some reason I still let it make me feel small. I wish I would have let myself see him as the ignorant one. Instead of running to the bathroom crying. I thought after having a diagnoses I would feel better if a dr ever did this to me again. Instead I felt worse. I guess maybe because it felt like he was saying quit feeling sorry for yourself you've seen enough drs and haven't found anything wrong! Like the pots was nothing of concern. When he took my heart rate (sitting down) he said your heart rate feels fine to me. But I guess it isn't that way all the time because you have a positive TTT. I wish I could find a therapist I could talk to like that, but after being labled with anxiety and such I have a fear of them. Thank you for the support, and the hug. I really needed them. Suzy

Thank you all so much for the support. It means so much to me. Tomorrow is my wedding aniversary, and we decided to stay in Phoenix and enjoy ourselves, but I have been so shook up by this I'm not any fun. Jennifer. Thank you so much for the support. I sent you a pm. (if I did it right otherwise someone else on this board will think I'm nuts.) Lina. That is a good idea, and my insurance does cover it. I do have a bit of a hard time being honest with ANYONE in the medical profession, but maybe if I could at least find one I can trust a little it would help. Melissa Reid. That is good advice. How do I go about finding a dysautonomia specialist? I think the other dr that I see at the Mayo Clinic (where I was today, and that is the first dr of many that I didn't like) is a specialist, but don't realy know. I know he is a neurologist, but he had different dysautonomia pamphlets in his room. And should I see him for everything. I was referred to the allergist by the GI doctor who originally had me tested for the neuro antibodies. She also thinks I have dysmotility. (I don't know if I am spelling that right or even if it is the right word.) So I am scheduled for a EGD. I really honestly don't know what I am doing, or where I am going. I just keep doing everything the drs say, and am just worn out. I am sorry you were treated bad also. Thank you everyone. Suzy

Hi, I went and seen an allergist, due to hives that I have gotten since I first got sick. I had been reading a little about the mast cell activation, and on another post found one more thing that applies to me. I really haven't had time to learn all there is about pots, let alone the mast cell activation. But thought it was worth mentioning. When I went in to be seen first a resident came in and talked to me, and I struggled to explain my story, and all the different reactions to medications I've had. It is very hard for me to even talk to drs., because I have had so many bad experiences with them, and I get confused easy and dont comunicate well. So after struggling to explain everything I told her I had a story I had written out because I forget too much. So she went out and talked to the regular Dr, and when they came in he didn't even introduce himself. He didn't even get the door closed, and he was already giving me a lecture about how You can give someone too much information, and they are only human too, And it takes too much time. This lecture went on, and everytime I tried to say something I was ran over. (I guess he figured I didn't deserve any more of his time.) I had a rash (amazingly) probably because the resident had scratched my arm, and that will often start my itching and hives. I showed it to him, and on to a new lecture about how itching will cause that. That the more I scratch the more that will happen. He said something about the mast cell thing that I had mentioned to the resident. He said he would check me for it even though he didn't think I had it. At this point I was already fighting back tears, and just wanted to run from the office all the way home. I was barely hearing anything he had said, and was just hoping it would be over with. He then asked me to see the pictures I had brought. I showed him the bruising on my spine. The blisters that turn into scabs, and then last the rash I get before I scratch. I don't know why but that seemed to intrest him very much. He asked if I had had it biopsied by a dermatologist, and I said no. He ordered the blood work, and some 24 hour urines. I said goodbye to the resident, and went and did my blood and urine. All the time fighting back the tears. Maybe it wouldn't have been so bad for me, but I have been treated like a child so many times by drs. and it brought back horrible memories. My husband was very upset because he knows I am usually a very strong person, and don't let other people bother me. I couldn't stop the tears anymore from rolling down my face, and finally went to the bathroom, and cried my eyes out. I have more appointments in a couple of weeks, but just don't think I can do this anymore more. I just can't take feeling like a lesser person just so a dr can have his moment of fame. I am probably just going to cancel my tests, and my appointments. I guess I am just a lesser person, because I can't keep overcoming this. It is just too depressing. I also asked if sensitivities to medications can be part of pots, and he just said no and looked at me like I was and idiot. Anyways. This is my boo hoo-ing story. Thank you for just letting me let it out. Suzy

I can't tell you how much this helps, I was looking at that mast cell activation disorder, and thinking it might apply to me. I have had the autoimmune test for ACHR.neurol.gangl.AB, I don't know if that makes a difference? I am on my way to the Mayo right now for an appointment with an allergist for hives, rashes, and welts that I get all the time. I also have easy bruising. Bruised up and down my spine bad once and don't know what caused it. I think I also remember them saying flushing, which I have. So when I see the allergist today I will ask about this. Thank you it couldn't have come at a better time. I also had a echo stress test, where my heart rate was at 160 after walking for less than 5 minutes. She stopped the test. When I asked the doctor he said I was just out of shape and needed to get exercising, which I tried and no matter how many times I went out walking it didn't improve and I frequently ended up laying on the ground! I have also had 2 pulmonary function tests, and they were both better than normal except one part which they said could be from extra weight. So what was it when I was supposedly anorexic?!? After my last lung function test she put me on a pulse oxymeter, and had me slowy climb a step. My oxygen was 100%, but my heart rate was already at 130 at less than a minute. once we passed a minute I was at 140. She stopped the test. Well we are to our hotel, so I will know a little more about this in a couple of hours. Thanks a lot. Suzy

Hi Firewatcher, I didn't know that breathing problems were part of this. I have thought that I had everything from lung cancer to asthma. How was it discovered that the diagnoses was a mistake? Maybe that is what causes my persistant and sometimes severe coughing. I tried an inhailer once, and it just made my heart race. Thank you for sharing this. Now maybe the shortness of breath won't be as scary for me. Hi Lizzzgirl, I am also newly diagnosed. Not the hyperadrenergic, but the OI due to some autoimmune thing. Iknow what you mean when you say it's been a long road, and I'm sorry you've had to go down that hard road, but glad you are getting the help you need. I think that the medic alert bracelet is a great idea. I had just mentioned on another post that I had been tested for porphyria, and when going through the testing I learned that they recomend a medic alert bracelet, and they also have a hospital kit, to help the doctors who are going to treat you, and it also contains some medications you might need. I don't know the exact contents, but considering the nature of this illness I think it is a very good idea for dysautonomia also. I would hate to be found passed out, and have them give me say a heart medication that I don't need, or that I might have a reaction to. Best of luck to you. Suzy

Hi ptalaura, I am so sorry you had to go so far to get help. It is infuriating that you tell a Dr that you have a diagnoses, and they treat you like you make it up. Like what are you really going to get out of making something like this up?!? UUURRRGGGHHH!!!! I was diagnosed (during my sick "all in my head" period) with a aortic valve insufficency. When I went to the ER for fainting the Dr laughed at me and said "Did you get your results of the echo?" And I said yeah. I have an aortic valve insufficency. And he said "who told you that?" I said YOUR CARDIOLOGY DEPARTMENT! He left the room, and came back a little later and said I don't think that is what is causing your problems! I looked at the report. You aren't experiencing any symptoms from that. I have told my family the only way I am going back into my local hospital is unconcious! You know also I think what you are doing is a good idea. carrying your paperwork with you. I was tested for porphyria, and although I didn't test positive I learned that if you have that you should wear a medic alert bracelet. Considering the nature of this illness I think that might be a good idea here too. For those times when you can't talk for yourself. And also maybe like some kind of information sheet for Drs. who don't know about the illness. That would be a great way for Drs. to learn. Is there a information sheet on this site that could be used that way? Anybody know? I think it is nice that you were treated differently. But what is really wrong with our world that you have to prove with a piece of paper that you are worth caring for. In my opinion, it shouldn't matter if your pain and sickness IS all in your head. You are no less a human being with feelings. And your pain and suffering is no less. It's also amazing to me that a Dr will talk to your husband. But not you. Like your husband knows more about how you feel than you. I asked a doctor for a test that I wanted done. And he said no. wouldn't even discuss it. My husband on the same visit asked him for a arsenic test. (we lived in an area that was high for arsenic in the water) Sure no problem! An arsenic test! How often do you see one of those?!? It was a test that I wanted done, because I thought maybe that was it, but the point was I asked him for a more common test, and he wouldn't do it. It just infuriated me! Well thank you so much for sharing that story with me. Do you live in a small town? I do, and it sure does make it difficult for medical care. Take care. Suzy

Thank you for that advice Flop. So if it's salt I need 10 g of than that would mean 5000 mg of sodium. I am still not near that, but getting closer. I am taking it slowly, kind of out of nature. I thought if I ate the salt I would just naturally drink the fluids I need. But interestingly enough it's not making me thirsty. So I have to kind of make myself drink. I want to use a natural salt like the himalaayan. And how cool would that be pink salt! I really enjoy soft warm pretzels. I'll have to get some of those. Thanks so much. Suzy

Wow, I begining to see how different everything is for each person. Thank you for the clarification on the salt vs. the sodium. I will definatly have to ask him which one he meant. Because I'm working on grams of sodium. Guess I will just have to go to subway for lunch! Darn! Well thank you all for helping me with this. And to dizzysillyak...I would check that salt soon...I discovered the worms when I was sprinkling it on food. And I don't know how long it had been that way!!!! All I could think was how many times did I use it and not notice?!? It was very ew! Suzy

Hi, After recieving an injection before a ct with dye, I became very stiff. Especially my chest back and neck. The back of my neck swelled huge, and I couldn't move my head from side to side. I also had a very hard time breathing because I just couldn't move my chest very well. Felt like it was made of rock. Now on my record it shows extreme muscle tightness. I had a lot of other symptoms too, but I knew nothing of dysautonomia at the time. Now I know what I had. Suzy

Yes. He said I have Orthostatic Intolerance. And I know my blood pressure can drop very low. Just not all the time. For the valsalva manuver it dropped to 77/I think unreadable because when I finally was aware enough to look the second number was a -. Does your blood pressure usually go that low for the valsalva manuver? Anybody know. Thank you for the help. Suzy

I believe your doctor made a mistake here. If you google sodium deficiency, you'll see that we need between 2500 - 3000 mg a day. My doc messed this up too. He told me to eat a bag of potato chips a day ... And I was all ready to follow his instructions when it dawned on me that potato chips don't have nearly enough sodium ... Also, you need to go slow when salt loading. It gave me headaches and caused a spike in my BP if I had too much at first .. those symptoms lasted at least a month and aren't a problem now .. Oh and it's best to use natural salts like Redmond's real salt, celtic salt and Himalayan. Sounds extreme, I know, but these have minerals in them that our bodies need ... I just add 1/4 tsp to my water 3 - 4 times a day and get the rest from my food. You get used to the flavor and actually begin to crave it ... HTH .. Marcia Maybe I misunderstood him. We had the conversation on the phone, maybe he said 10g per week. What is the dose for everyone here? Well either way I'm no where near even 3 grams yet. I will ask him maybe on monday. Thanks. Also have you noticed the natural salts get little worms in them when they sit to long? I had regular salt, and sea salt in the same cupboard in my kitchen. the lid was missing from the reqular salt, but my sea salt that had been there for much less time was full of those little bugs that get in flour. I guess the bugs know which way to get there minerals too huh? Thanks for the info. Suzy

Yes that would be easier to swallow. Where do you get them? Just a drug store? Thanks Suzy

Hi Sara, Thank you. Yes that does help. (especially the part about the worms! You'll be happy to know I didn't keep it!) I was working on the 500 mg=1g assumption! Boy do I have a long way to go! Thanks dewormed salt logged Suzy!

Hi everyone, I was told by my doctor to eat 10 grams of salt a day. So I said ok sure, thinking no problem I like my food a little salty! Until I started reading how much salt there was in food. What is it 500 mg=1g? or is it 1000? Either one is a LOT! I've got sea salt before, but I didn't eat it fast enough, and it got little worms in it. Can you eat sea salt instead? And is it the same grams? Thanks for the help... Salt logged Suzy

Hi, I am just curious about the effects of the benzos on you? Most people I talk to have trouble coming off xanax. I was sicker on it than even the withdrawl (which was bad) made me feel. I had such serious side effects from taking xanax that my urine was very dark brown, and well just a lot of severe symptoms. My sickest time, was when I started, and while I was on those drugs. I also had 2 abnormal EEG'S that weren't seziures, but were abnormal. One when on the drugs one when off. The tests were opposite each other. They were also opposite from what effect the drug should have had. I am just curious if this has something to do with dysautonomia, or if possibly it could have maybe triggered it? Any thoughts on this? Thanks Suzy

I just wanted to say I am sorry. I know how frusterating that is when you get told one thing, or nothing, and find out another. But good for you for standing up for yourself! Suzy