all4family

Hi Potsgirl, You don't sound ignorant! In fact you made me feel better because I think it took me a month before I figured out how to send a PM. And yes you are right about what it means. The easiest way to do it(for me anyways) is to go to the persons username, and right click (I think, if not right there is only one other choice..ha ha!) It will give you a list, and one is send message or e-mail or something...anyways you get my confused point right?! click there and it will give you a window just like you post in and you can send a PM! Wow if I can type that, and you can follow that we must be potsies! Anyways I will send you a PM to make it easier, and you can just reply! Hugs Suzy

Hi Potsgirl, I don't live in Tucson but I am close, and would love to talk to other potsies. I do travel to Tucson occaisonally to visit my inlaws. (I was actually originally from there.) I'm in! (But let's find air-conditioning!!!! ha ha!) I also think we might share the same pots doctor....send me a pm and we can talk! Suzy

I second what sara and EM said here. I am not offended at all. I just went through a lot of mis-treatment that should not have occured because I wasn't willing to accept the psychological diagnoses I was given. I was treated very badly because they believed I had a mental disorder. I do not think people with true mental disorders should be treated like I was. I feel very bad for them. I hope you find an answer for your "panic attacks" I think many times feeling bad, or sick, for me, did leave me to feel scared, or "panic" simply because I didn't know what was wrong, and because it does feel scarey to feel like this. Getting the dignoses took much of my fears away. Suzy

Hi, Good description EM and sara. I am usually a little wary of posting about anxiety subjects, because the last time I said the word "anxiety" I was given pills, and got very sick. But I just happened to be looking through my medical paperwork this morning, (wow what a job!) And I found something that fits into this subject perfectly. In 2001 I wasn't "sick" yet. But this was right after the terrorist attacks, and I had been like most people very upset about them. Then there was the anthrax in the mail thing which further made me feel "anxious". So I went and got some counseling to help me through this tough time. Well of course I was also prescribed ativan, Which I think I had less then 20 pills. I think it was 14, just enough for one pill every day for 2 weeks. I freely admitted being anxious at the time. Then I got a sinus infection, and broncitis to go with it. So they put me on some medications for those. This is when I became "sick" with all kinds of strange physical symptoms. (some of the same ones I have now.) Vomiting, visual, changes, headache, etc. etc. Well apparently I thought these physical symptoms may have been due to some of my medications, because I hadn't had them BEFORE I took the medications. So I was reading in my paper work, and it said that they took me off of one of them because I could get the headaches etc. from that. But I continued on feeling bad, and having "anxiety, or panic attacks" Until I was through taking the medications. Then within the next couple of weeks I started feeling better, and though the whole terrorist attack thing was still there I no longer had the physical problems. What is most interesting here is I just found I cannot metabolize drugs correctly, and I believe that at least contributes to my dysautonomia. In another words I was having the feelings of anxiety which everone does feel at times in there life, but I did not have the physical symptoms that would go with the "panic or anxiety attacks" until after I took the medicine. And if this is what causes, or at least triggers my POTS, then that was probably a POTS attack. When I was done with the medications I began to feel better, and eventually went back to life as normal, even though I did still worry about the terror attacks I had NO physical symptoms. I think being so sick is hard, and we just want to feel better, and if someone tells us it is a panic attack, and we can do something about that, that is better then something there is no answer to. We all just want a way to make ourselves feel better, and hope that just "calming down" will do it. I hope one day we will all find an answer to the way we feel!!! Suzy

Hi Julie, Thanks so much. I don't blame you...I don't know what to do either, and it's my body!!! I canceled my dental appointment (once again) until I can get this thing figured out. I have the issue of the antibiotic, and the issue of the novocain... I got real sick the last time I tried the dentist! So now I have this awful tooth in my mouth. Maybe it will just fall out!!! ha ha! Thank you for the name of the doctor. Maybe they can at least tell me what kind of a doctor I could look for. My current doctor said that he just doesn't know what to think. He said he wished he could be more helpful, and even said he asked lots of other doctors, and they didn't know either. He said he had never seen it before. I think he would be open for any kind of suggestions I could find for him, and would probably be relieved if I found some other information. (he really looked like a deer in headlights.) The only thing he said was he would like to retest me in May. I don't know all the symptoms of mast cell disease, but I get flushing, I have the skin blisters like I seen in the pictures for mastocytosis. I get rashes all the time, and don't know why. I have easy bruising, and dificulty breathing like asthma that isn't improved with the inhalers. That is the most that I know that is related to mast cell. I have so many symptoms it is hard for me to tell what they are from. Thanks for your help. Hugs Suzy

Great Poll! Thank you. I can't wait to see all the results.

Hi Sara, I get weak facial muscles when I am tired. I feel like I can't control them very well, though I don't have drooping. I also have slurred speach once again when I am tired (which is almost all the time!) I had a friend of my daughters once ask me if I wore a tounge ring! She was so impressed! I was devistated! I get a rapid moving of my tounge inside my mouth, and I can't control the pitch of my speech, and lose my voice frequently. Glad to hear you don't have MG! But sorry you don't have an answer to your problem!

I put Better Mood/Self esteem for the benefit of exercise question, but I think that my best benefit is less muscle pain, and stiffness. Worse in some places, but I have to compromise somewhere! Suzy

Hi AJW, Thank you! I can't tell you how happy I am I went back! It was the worst! I would take a medication, and have a weird reaction, and they would decide I couldn't take that particular medication, and give me another one that would be worse, or even worse I would have a "reaction" to a medication, and they would treat the "reaction" with another medication! Now I know why my urine was the color of coke! The only thing that gave me any improvement was getting off ALL the medicine. Which helped right up until I needed a medication again! Hugs Suzy

YEEEEE HAWWWWWWW!!!!!!! LET'S GET US A POSSE GOING!!! WITH A WHOLE BUCKET OF CROW!!!!! Thanks a lot Jan!!! Hugs Suzy

Hi Julie, Thanks a million for looking into this! I keep looking things up on it, but was more confused after I read stuff then before! I even found something on Simian Immune diffeciency virus! whatever that is! So this could be an indication that I have the MCAD? That would be such a relief...not that I want that either, but at least that takes away the question of cancer...(or does it?) And it would also make sense, because I had the rash when I was at the doctors office, and it was a few hours after that that I started to collect my urine. Would you recomend I don't take an antibiotic for the dental appointment?? I know you are not a doctor, and can't TELL me what to do, but I take all recomendations. If you don't mind recomending the MCAD doc I would love to at least call there office. Maybe they can recomend a doctor here, or if worse comes to worse my husband says he would travel that far to get me the help I need! The current allergist had no clue why one of the tests were up, and the other wasn't. So I don't know if he even knows about it. He just said he can't treat me because it doesn't match with any known disease. So he is retesting me in May. But I sure would like to have some answers before that. I can't say thank you enough for researching this for me. I am trying to learn about it, but it is confusing! You are an Angel! thanks again hugs Suzy

Hi Erika, Welcome, though sorry for all that you have gone through to bring you here. I always say just that statement about I feel like my head is going to pop off!!! I do get facial pain, but mine is mostly because I have headaches.... You must be pretty tough to have beat Guillain barre!! Some doctor along my travels had mentioned a disease that is almost the same as guillain barre, but it is chronic instead of acute. I am wondering if you have Guillain barre if that makes you more suseptable to the chronic one....just a thought...I don't know if they are the same. I know how it feels to go to the hospital a lot! (they just never kept me!) I did read another post, I think it was "my wife is in the hospital" that mentioned a good doctor in Florida. I think there is also a Mayo clinic there. I hope you get feeling better soon, and I hope to see you around....although if your feeling better I probably won't be seeing you... Ha Ha Ha! take care Hugs Suzy

Hi Ernie, http://books.google.com/books?id=Ff-RPWd-J...1&ct=result I found this article about clinical vs. research care. I didn't read the whole thing, but what I got was that they should give you the option to recieve your results. At the very least is says that the intrest of the patient should be foremost. I would think that if you could prove you wanted it for further health care they should give them to you. Good luck! Hugs Suzy

Hi, and welcome, although I am sorry for what you have been through that brought you here. Your story sounds so familiar to me. Although it took me 5 years to get diagnosed and by that time I had been to my ER 66 times, and they were sure to count and let me know! I really get the thing with the feeling of your heart laying in your back. I get the feeling of all my blood going to the lower most part of my body, and severe numbness. Also do you mean that you don't get dizzy when you stand up? Or do you mean you don't feel generally worse after standing for a while, especially in one place? If a doctor knows about POTS, he is going to know about dysautonomia also I would think. I would think it would be worth it to see him if you can. It sure will get you a lot farther then going to the ER where there best trick sometimes is counting the number of times you have come! I would think with the cfs/fibromyalgia, and the saline implants that you really should look into it. My dysautonomia is autoimmune dysautonomia. ( I just found this out. ) and there is a connection with cfs/fibromyalgia and dysautonomia. Spend some time reading on this site, and I am sure you will find many things that just ring a bell! I hope you get some answers soon. I know how it feels to feel like you are going to lose everything. My kids were still pretty young when I first got sick, and I never knew what was wrong. Learn all you can, and don't let anyone tell you you don't know what you are talking about. It's your body. You have been in it your whole life. If I had been dignosed the right way in the beginning I believe I would have done a lot better! Take care! Hugs Suzy

Great big understanding ((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))!!!!!!!!! I went to take my son on a bike ride today, and I was even riding on my scooter, but I was falling asleep riding, and just wanted to lay down! It really stinks to not do the things our hearts really want to do!!!!!! I hope you can get out and garden soon!!!! Hugs Suzy

I don't have it anymore, because I was paying monthly for it! I stopped using it because I barely slept the whole time I used it Then when I got a sinus infection which I never get that was the end of it for me. But I did read someone who said they wore it for a couple of weeks awake, before they slept in it. I think if I tried that I might be able to adjust. Maybe I will see another sleep specialist and ask him about the gene too. Good luck with getting sleep, and thanks for sharing this. Hugs Suzy

Hi, If you do figure out how to add more questions I would also add how long does it take you to recover to be able to perform normal activities. Suzy

Hi Jennifer, Thanks for posting that. Makes me think I should try the cpap again. I tried it for 2 weeks, and got very little sleep, and the machine was running on the floor. I never could leave it on my face! So can you get tested for this gene? Well I hope it won't take you 12 years to get some better sleep!!!! Hugs Suzy

THANK YOU THANK YOU THANK YOU Susan!!!!! I'm dancing with you!!!!!

Hi EM, The reason I was first prescribed the antibiotic is because I have a aortic valve insuficency. But the last dentist I talked to asked if I had any artificial valves, and I said no, so he didn't seem to think it was a big deal. But then I have read on the internet, and was really scared when a guy said his mother had an infected tooth, and they pulled it, and in a week she was dead from an infection in her brain! So I don't know which risk is bigger for me the antibiotic, or the infection. I eat a lot of raw garlic to try and keep the infection down. But I am nervous. I also read the side effects of all the antibiotics, and I don't want to try anything more then penicilan, and that is the only drug that a doctor actually said I was allergic to! Thank you for sharing the story of your daughter. It does give me some comfort. Oh, and I tried learning all I could about the genotype I am missing, and I was sooooo confused. But I did find this article that was of great interest to me, beause it says that one guy experienced orthostatic intolerance after taking a drug. Now I continued taking medications after they were making me sick, because they were being pushed on me, and I didn't know if they were right, and I was just scared of taking them or not. Makes me think that maybe after a whole year of taking these drugs that it at least contributed to this! In case you are interested here it is. And thanks for the support on the dentist issue. I am sooo nervous! http://bioethics.stanford.edu/education/do...SamplePaper.pdf

My first symptom ever was numbness with a blood pressure of 186/112. Then when I am having a lot of symptoms sometimes it spikes there again. I have had an ear infection, and a bad tooth that both hurt very bad, and my blood pressure is spiking again. But what is funny is sometimes when I feel real bad it is low. REAL LOW! I read somewhere that because the ANS isn't functioning properly that you can get these wild fluctuations for small reasons, or no reason at all. I hope this helps you. Suzy

Thank you Janie! It feels real good to have a doctor who now believes what I say when I say I get sick on meds!!!! I think he will always listen to me now. I hope he does others too!!!! Hugs Suzy

Hi Janie, I just wanted to add that I get the twitching when I am real bad. It is like having a eye twitch in my muscles. You can see it too. I also get the hand shaking, but I don't have it all the time. Mostly just when I am tired. Thank you for sharing your speial aniversary story with us! HAPPY ANIVERSARY! that is a cute story, and I can so relate to it! I fumble and drop things frequently. I'm glad you still had a good time! And just to think you were litterally his SWEET heart! hugs Suzy

Hi Rene, That is so interesting that you say your temperature is always low. Mine has gotten as low as 96.,but usually it is around 97.0. I'm 37, and I also know how to hold a thermometer! We can't both be wrong huh? Yes I solved the problem by eating laying on my stomach. (although restaraunts are out of the question) When I first noticed it helped was after I had eaten, and began my throwing up, I was super exhaused, and laid on my stomach, and it quit. I guess you could say I have gerd, but several doctors have seen me throw up this way, and they all call it vomiting. It just happens a little at a time and is anything I put in including water. I lay on my stomach, and prop up on my arms and eat. And I have to admitt it also got better after I stopped taking some medications that were making me real sick, but I still have to lay down, or I will throw up and get full to fast and burp and all that stuff. I didn't succeed with my upper GI. I tried it without medication. I was diagnosed with dysmotility still, I think mainly based on a blood test in conjunction with a special CT that showed I have a dialated esophogus, and probably my symptoms. They still want me to do it, but I won't take the drugs! That is just terrible what your friend said. Do you have other people that help you that aren't so mean? I have my husband, but have just recently learned that if I take a scooter in the store I can shop on my own! It feels pretty good to. I really don't know why people would think we would want this for ourselves! I hope you are able to not talk to her as much. It is bad enough to hurt physically, but when you add on emotional hurts like that it is awful! I had a doctor (well I think it was a psychologist) tell me I was anorexic! I told her I was always overweight before this. She told me it's not about a weight, but about a relationship with food! uuuggghhh! I said my relationship is I eat food, then I vomit it how good can it be?! (then she said bulemia!) Whatever! I later seen her at a church, and when I tried to tell her how I solved the problem she told me to pay attention to the sermon! (even though she had started the conversation, and said what she wanted to!!!!) I hope you get to feeling better soon, and I hope you get answers! You can at least always come here for validation of how you feel! Rant away! Hugs Suzy

Hi EM, When I asked him if it was hereditary because my mom has also had some problems with some of the drugs on the list, he said yes. So I asked him where she could get the test. He said he wasn't sure, but sonoran quest (I think) might do it. I am not even sure what the name of the test is, but I will find out for sure. I think the genotype is the name of the test. http://www.dnavision.be/personalizedmedici...CFR7yDAodkW-57g http://www.clinchem.org/cgi/content/full/51/7/1291 http://www.jmp.com/software/genomics/?utm_...CFSIeDQoddFXb7Q The first 2 of those is on the specific one that I was missing the enzyme, or gene, I am not sure yet....still learning. But there are several of these. You can test ok on one, and not on another. I will find out today and let you know more. Thanks for that information on the dentist. I even tried to get a laser dentist, but they said they can't use the laser because I have infection there. I have to get a root canal, or have 2 teeth pulled. I chose to get them pulled, because I don't know if I will handle the chemicals from the fillings and glue needed. But I have been reading on the internet looking for information that I would be able to do the dental work without antibiotics, and all I keep finding is don't do it without antibiotics, or you will die! (well ok...probably not quite that dramatic, but close!) The last time I had a dental appointment I took the antibiotic, and that started my second bout with being very sick. I never got the dental work done because of this. So I feel stuck between a rock and a hard place. Which is worse leaving this bad tooth in my mouth to become worse and worse, or getting it out and how?! I even looked up hypnosis dentists! If I could find one I would do that! But that doesn't answer the will I live without antibiotics question! You said exactly what I have tried explaining to people for a long time. I can survive the pain of a day or two, even if it is severe. But I just can't handle how sick the drugs make me. I have dealt with pain in my tooth as more and more pieces of it keep breaking off. But even with that I know the medicine is worse! Do you think I could handle the pain of having a tooth extracted, or a root canal? If I could and I could find a dentist willing to I would give it a try! Maybe I will see about the laser dentists again...none of them will do it. Thanks a lot for sharing that! Hugs Suzy