all4family

Hi Julie, Thank you again. This is so nice of you to take your time to help me. I understand more about both pots, and MCAD from this site then from the doctors I have talked to.I would not have even asked for the test if not for the information on here. Do you need a referal to see these kinds of docs? I have a good ppo, as far as insurance I don't think I have to have a referal? Anyways thanks so much. I will be calling, and seeing what I can do. First I have to get a copy of my paperwork from Mayo clinic. hugs Suzy

ty ty ty ty Julie, that is so very kind of you. I can't even begin to tell you how much I appreciate it. The more positive blood tests I get the more confused I am. This is so nice of you. When I lost weight I was on xanax. And I couldn't stop losing. I kept saying I think it is the drug. It took me a while after getting off it to balance out, then I gained overnight. Then another bout with medications, and the same thing overnight loss and after a while overnight gain. That is reasuring to me because I am worried about some type of GI cancer. And I just want to say one more time....THANK YOU! Suzy Oh and I just wanted to say if it is even close to AZ we will travel.

I just wanted to say that after my doctors appointment yesterday for ear infection My ear swelled shut again. I guess the odoscope irritated it. I took some turmeric this morning with some water, and the swelling in my ear seems to be doing better! My ear isn't completly open yet, but I plan on taking more and hoping it will help. Suzy

Hi Heather, I just want to say hi, and "me too"! I know what you mean about feeling so alone in this, and then finding all these people who understand what you are going through. I am fairly new here, and to being diagnosed with pots too. So I don't have a lot of advice as I am learning. But you are definatly not alone, and I am sure there will be some great advice coming your way real soon. I also wanted to say I really share the sensitivities to medication with you. I have had the worst time with that. Take care, and I look forward to seeing you here. Hugs Suzy

Hi Jan, They are so not with it. When I was so sick I couldn't stop puking, and couldn't stop losing weight. I was even told that if I didn't quit losing weight at the rate I was I could die from it. That scared me. And it took me a while to get to where I could eat without puking. I had to lay down and eat, and then stay down for a while afterwords. I told the doctors at the time this, and they said "I think it's a component of your anxiety". I still eat my food laying down. I guess I'd rather "go to the grave" (as he said) with a donut in my mouth, then a mouth full of puke. I've lived both ends, and neither is fun. But it is good to be able to hold food. Even if I hold it too well. Thank you for the prayers. I feel so sad because I haven't been to church in a while because I have been so sick. I definatly know that the chemicals, and drugs make me worse. I am sure the stress of trying to comunicate with doctors doesn't help. Yes they will be a patient too. But I will bet they can get someone to listen. I feel like it's not mental, but you can only be told something so many times before you start to wonder. Thank you so much for the kind words. Hugs fat to the grave Suzy

Hi Julie, Thank you so much. You don't know how much your words mean to me. I don't understand the difference between Mastocytosis, and MCAD. I read that one of the causes of mastocytosis is cancer. But maybe I got it all mixed up. I will call and get my paperwork sent to me. It only takes about a week,and then I will tell you what the tests were that are off. Or I will just call the GI office tomorrow, and ask which test she was talking about. I think if she has already told me they are allowed to give that information on the phone. I am not glad that you get hives, but am very relieved to know I am not the only one. They come out of nowhere sometimes. When they did the Qsar sweat test on me on my arm where the cup had been in the exact shape of the cup I got perfect little round hives. And I hadn't even scratched them yet. All the tech could say was I've never seen anything like that. She felt bad for me, and gave me a wash cloth which cooled the itch, but the hives were still there untill about 30 min later. I have gotten hives most of my life, but only here and there, and never this bad. When I first started getting them bad I went to the (oh no don't say it) ER, thinking I was having an allergic reaction. I only made that mistake once. After 8 hours in the waiting room the only itch I had was to leave. And of course there was nothing wrong with me when I was actually seen. I live in AZ. Thank you so much for offering to help. Your last words brought me to tears, and mean more to me than you can know. I try to act like it doesn't bother me, and rolls of my shoulder, but deep down I have a lot of hurt over it. So thank you. Thank you so much. Hugs Suzy

TY TY TY TY TY TY TY I can't say thank you enough. I am about 5 hours from Tucson. Suzy

Hi Jennifer, Thanks for getting my flank! And for always giving me a laugh when I need it. I wish there was ala-cart medical care. want to know if you have EDS? just go pick the tests you want. It sure would cut down the expense of going to the doctor telling him everything you think he wants to here, just so he can think he thought of it. To get a referal to another doctor (who didn't get the credit for thinking of it) who now has to save face by saying I don't think you have that. So he then tests you for everything but what you wanted to know about! I am so glad you have a doctor who knows there is something physically wrong. I do have some doctors who listen to me. The ones from the Mayo Clinic. But that is about a 3 hour drive, and I don't think I can make them my regular doctor or I would. They are good with zebra's, and are the only reason I am here on this site instead of hypochondria.com. There was actually an article in our local paper about why we can't attract good doctors. I am glad you went the route you did with the EDS. It always makes me feel better not to go get insulted by a doctor! Do doctors ever quit telling you you are deconditioned? I have tried to "get in shape" for 5 years, and never have improved. Let me know if you get that prostrate exam!?! You crack me up! Well I'm ready to round up the wagons! You ain't seen nothing untill you see 3 angry cowgirls done had enough!!! Thanks for the encouragement you always give. Hugs Suzy

Thats great news! One less thing on your list to worry about! Like you already don't have enough! Suzy

Hi Jan, Thanks for keeping my back. (And for spelling psychosomatic right for me tee hee). I am in complete agreement with you. I don't know why I have done many tests that I have. I have refused tests before due to a doctor saying I'm doing the test but I think it is all in your head. But that doctor wouldn't be my doctor anymore. And a prime example of why I don't have a regular doctor happened today. I went to have my ear checked, and in the doctors interview of me he would ask me a question, and I would answer, and try to explain this has to do with dysautonomia. Every time I would try and explain something he would say I was getting ahead of myself. So I just answered his questions. This doctor decided the root of all my evil was my weight which has fluctuated wildly in the last 5 years, but is up right now. So when he said I was going to eat myself into a grave I said yep. (Why waste my time) Never mind that just 5 months ago I was having rapid weight loss due to vomitting etc. So then we came to the neuro questions do you faint? Yes. Has the neuro at the mayo said why? Yes. The dysautonomia. (that I tried to explain to you but you didn't listen) Then I tried explaining about having sensitivities to drugs, and once again he didn't listen. He said he would be back, and left the room, and came back with a prescription for oral antibiotics, and told me to go get a chest x-ray! I wanted ear drops for my ear, because that doesn't have to go through my whole body. And I have had a bazillion chest x-rays. Now later on someone will lecture me for getting uneccesarry tests done. But that doesn't matter, because it's all my fault I'm overweight. I'm either anxious or depressed or overweight or anorexic. And that was the other thing. He asked me if I had depression? No. anxiety? no. ever see a psychologist? yes. Why did you quit? Because I was tired of talking about everything that happened to me as a child, that is not why I am sick. Anyways he gave me a oral antibiotic, and said if you have a reaction you will just have to call. This is why I don't have a doctor. I can sit at home and blame myself for everything. I have been well trained at that. So here I sit with a prescription for oral antibiotics, and instructions to get a chest x-ray. Gee I wonder why the other 500 doctors that have seen me didn't think of that! More radiation for what? Sorry I didn't mean to go into another gripe. It was better when I just went with the I'm crazy diagnoses. I know how to handle that one.....Yes doctor I do think to much about my health....yes doctor something tramatic must have happened to me as a child to cause me to want to be sick this way.....I will try and just learn how to cope with life a little better....thank you for spending some time with me that you could have used for a REAL patient. Suzy

Hi Julie, I do want to follow up. I just can't bring my self to do one more thing that might make me worse. I did everything like the doctors said, and just kept getting worse. The only thing that made me feel any better was to become a naturalist and not take any more medication. I was the one that asked if it could be done without the medication. I have heard of other people doing it. I would try almost anything to get the answers I need, without taking drugs. It is a GI doctor who first ran the blood test that led to the diagnoses of dysautonomia. She referred me to an allergist due to my hives. On my way to the appointment with the allergist I was reading something on here about the mast cell thing, and asked him about it. He is the doctor who told me if I scratch I will get the hives. He said he didn't think I had the mastocytosis, but would test me for it. I haven't heard another thing from him. I think my husband complained to someone. so yesterday before the EGD was the first time I even knew anything was found. I don't even know what is suspected if anything, and why I am doing the test. Yesterday after the test my neck was itching, and I was getting rashy feeling. The nurse left I think to go talk to the doctor, and when she came back my husband asked about my neck. She said I was making a hystamine response because I had myself to shook up. So if they think this is all psycosematic I don't really see any reason for me to keep doing it. I guess it would be helpful if someone talked to me and explained things. I have to say they are great at diagnosing things, but I need to understand the reasoning, and be involved in the decisions of what tests to perform. I read on mastocytosis last night and found that it can be caused by cancer. Which this will be the second thing that could be caused by that. But I feel like I am turning circles in the dark. Do you know any other test that could get the same result? I did see a video of someone get something like an EGD, but they went through the nose, and the tube was smaller. If anyone has any suggestions to get the same results without the drugs and choking I will try anything. (obviously) Thank you for your help, and support. hugs Suzy

Thank you Nina, I wish we had indian grocery like that here. I will look at costco though. They have big things of spices, but I don't know about turmeric. Gosh you made me hungry for something fruity and spicey. Thanks for the information, it helps me. Suzy

Are we talking tumeric like the spice in your spice cupboard? I love to add that to my food. If it's the spice I am thinking of. I imagine you would have to add a lot to your food though. That is very exciting. I am always looking for something natural. I would be interested in the studies. Thank you for posting this. Suzy

Hi Julie, Thank you so much for sharing your story. That is exactly what I felt like. I felt so bad for the people trying to help me, but like you said the will to protect oneself is awesome. I don't think I will be afraid in dark alleys anymore! Muggers should run! I laughed so hard when I read your story. It made me feel better. They transfered you to a different hospital in a different state! that is so funny! And I bet you were happy to go! Thank you for saying I am brave. I think I am just more chicken of another year of sickness from the medication then from the procedure. Then again I didn't know how bad it would be! I still feel that pole in my throat, and it hurt. What is a ERCP? Did it go better under the anestesia for you? Thanks so much for the website, I put it in my favorites. That is how I am, it is not so much the immediate reaction, although I do have them,but an illness that follows. The diagnoses of MCAD would explain a lot with the medications I took. Many of them were sedatives. I don't know the exact results, but she said my blood work was showing Mast Cell Activation, and it doesn't mean I have it, but we have to find out why. Whatever that means. I will be printing that page, if I get the guts to even try it again. Suzy

Hi Earth Mother, thank you so much. That makes me feel a little better. I tried visualizing an ocean, but that went out the window as soon as the tube hit my throat. I almost made a break for it in the procedure room when it started bad. I am a difficult stick, and it took 3 times to get a needle in me for a drug I didn't want to use. I even looked at the dusting of snow on the ground outside,(at home before I left) and almost called and canceled and said I was snowed in! I am so tired, I am resting. Thanks for the support. Hi Janie, and thankyou. I didn't feel very brave laying there on the table. But thank you. I can tell you one thing. If a gang of lady doctors and nurses jumped me in an alley and tried to kill me by shoving a scope down my throat, I would have a fighting chance. Even with all 4 of them on me I was holding my own! I felt so bad. And they were nothing but nice to me.

Hi Jennifer, does the tube stay down in your stomach for 90 min.? She has something like that scheduled for me next. But she said she want's this one done first. I haven't tried laughing gas. But I haven't tried the anestesia either. Oh how I wish I could have gotten that scope down my throat. My throat still hurts. What is the solution for dysmotility? I feel like I am going through tests that I could tell them myself I have, and all to get an answer that there is no solution. Thank you Suzy

Hi Jennifer, I don't know about general anestesia, but the versed is a benzo, which is one of the many drugs that I became sick on. I didn't have almost any of the problems until I took xanax. I thought I was getting better and in the clear after getting off all medication, until I had a chain reaction of medicine starting with a simple antibiotic for dental. It was at this point that I knew without a doubt that even if the drugs didn't start the problem they made it severe. So even just a one time experience with a medication can trigger me being "sick". And my last episode of "sick" lasted for almost one year. So it is just a one time event for some. They experience it, and are done. I have to live with whatever "happens" for however long until it hopefully passes. So it isn't the one time possible problem with the blood pressure that concerns me, but what the next however long holds for me. What is a manometry? I was thinking maybe she could give me one of those camera pills, have you heard of those? But I think she wants a biopsy. They want me to come back in April, but I am already trying to think of how I can get out of it without offending her. Silly huh? Suzy

Thank you so much Jennifer. I was fine until the scope. I looked at my blood pressure once after it had happened. It was 220/122. yikes! All I can say is the people who can do this without sedation has my upmost respect. I don't know how they did it. hugs Suzy

Thank you so much Jennifer. I was fine until the scope. I looked at my blood pressure once after it had happened. It was 220/122. yikes! All I can say is the people who can do this without sedation has my upmost respect. I don't know how they did it. hugs Suzy

I have really bad reactions to antibiotics also. A doctor may never say so, but garlic is natures antibiotics. I did a lot of research on this because of my problems with antibiotics. I am not saying it can replace medical treatment, but I have ate raw garlic to overcome things I would usually treat with an antibiotic. The only thing is you have to eat it raw, or at least some people say. I read an article where garlic was being succesfully used to help aids patients fight antibiotic resistant bacteria. It was used with antibiotics. If you are interested I will see if I can find the article. Suzy

Thank you flop. Suzy

I went to get my EGD no sedation done today. I was scared, but I thought I would be able to handle it. I was prepped and ready to go, then they sprayed the numbing stuff. I began to gag and cough. I swallowed, and finally got it calmed down. So they began the procedure,and my gag reflex went into overdrive. I was in pain and pushing the doctor off of me. They got me settled down, and we had another go at it. This time with someone holding my hands. I fought off the lady on my hands, the doctor and about 4 people in the room. I was so upset. there was nothing I had in me that would allow that thing to go down my throat. All I could do was appologize, and the doctor was so very nice to me she said she just wanted me to be able to do it. She didn't even care that I had pushed her off of me. She was a pretty good fighter herself. I was so disapointed, and just mad with myself that I couldn't do better then that. She is scheduling me for a EGD under general anestesia. I just don't think I can do no more. Before I had the test the lady prepping me said I do have dysmotility. So that is not what they are checking me for. I guess they already have enough evidence of that. Also before the test the GI doctor said that it is important that we do this test because I have another test that shows I may have something else going on. She said I have evidence of mast cell activation. Yep that doctor that did the test just to entertain me. Well so here I go again. Why is it important to have a EGD done for the mast cell activation? The worse part of all this is I had planned on asking several questions. Like are we still looking for cancer? etc. I didn't ask any questions. I wanted answers to my health problems, but never thought I would get them. Now it seems like I have an abundance! ha ha. I wanted to come on here and give a really positive post for once. I guess that will have to wait until another time. Maybe next I can say there is no concern for cancer. Sorry not a positive one. I was hoping. Thanks for being there to share this stuff. Suzy

I have the antibodies to the ganglia that are called ACHR.neurol.gangl.AB, as most of you have probably heard me mention before. When she tested me she said they are antibodies that are related to cancer, and cancer cells. Because of this I (ignorantly) kind of didn't pay close attention to the rest as I didn't think it would come out positive. When I was told it was positive she said I would need to see a neurologist because it is a autoimmune neurological disease. Which part is autoimmune I don't know. I assume just having the antibodies makes it autoimmune. Until I came on here I thought all dysautonomia was considered autoimmune. I am right now very interested in finding out more about this link between autoimmune, and the pots. Whether it means there is an additional autoimmune component, or if the pots in itself can be autoimmune. I had heard somewhere that people can recover from this in 5 years from the onset. That was my plan. Well I would be interested to learn more also. I am planning on presenting the neuro with a list of questions, and this will be several of them. like why the antibodies, and what do they mean to me. Suzy

Thank you. I will have to find something close, but gives me somewhere to start. Suzy

Hi Mkoven, Thanks for answering. Who should I start asking? The doctor who diagnosed pots? Or just call a specialist on my own? Thanks Suzy