LindaJoy

Thank you for much for the information, Trish. I'll go to the site right now. This has been horrible. I tested positive both times I was tested, 6 years apart, but the doctor said my antibodies weren't high enough to count. That honestly doesn't make sense to me. Why are there ranges set to show a positive antibody if no one is going to look at the lower numbers? What do those mean then? Anyway, I'll look this over. Thank you, again. I'm glad you were able to have two beautiful children, and I'm so sorry for the loss of your first. Lindajoy

Hi, Naomi. I'm not sure about the Anticardiolipin antibodies part. All I know is, it's an antibody for APS. I'm sorry. It's all a bit much to try to become an expert on overnight. I sent an email to the CCF APS specialist, Dr. McCrea. I was advised to do this by the head of the APS foundation, whom I spoke with last night. She urged me to get a second opinion. Dr. McCrea wrote me back and said he didn't think APS was causing most of my problems since my antibody lode was low and I'd never experienced an unprovoked blood clot. I've yet to run these findings by the head of the foundation, who said I did have it, based on history and testing, and urged me to contact him. I'm anxious to get her thoughts now. Ugh. Back to probable M.E. causing my problems, and that's not a comforting thought. Thanks for writing. Linda

Hi, everyone. I just got some lab results yesterday wherein the pathologist said I have anti-phospholipid syndrome, due to my 2 Beta Glycoprotein IgM being elevated for the second time in so many years. My vasculitis doctor said no, the numbers weren't high enough, so being the aggressive person I am, I called the APS Foundation of America, and she said that the level of the antibody doesn't matter. What matters is I show I have it, thus I have APS. Great. Just one more thing to deal with. But, anyway, I came here because, with this syndrome, you can get blue feet, like a lot of you do, and livedo reticularis, like a lot of you do, too, and other symptoms that I've read here in these forums, so I'm wondering how many of you have this? I read, Julie (Mack's Mom) that you were being tested for it last year, but I couldn't find the thread that showed your results. I'm sorry, but do you have it? If so, what is your treatment for it? How are you doing with it? Could those of you who have this tell me what other symptoms you have with it, like the livedo, etc? I'm trying to see how many of my symptoms over the years can be attributed to this autoimmune disorder. Thanks, everyone. It's a good day when my account works and I can talk with all of you. Lindajoy

I'm at Cleveland Clinic right now. I've been here since Monday. Had to see my Endo for my Addison's, then a vascular surgeon, which led to a doctor in vascular medicine. I apparently have some acrocyanosis going on. Anyway, I saw Dr. Fouad back in 2005. She initially did a tilt table. I too spent the hour with the nurse, taking down every little word I said. I didn't realize how stupid I can sound until I read the "transcript" back. Anyway, after I failed the tilt table horribly (after only 7 minutes, my bp feel to 26/14), she set me up for some other odd tilt whereby I sat on a cart at an angle. When I started to feel symptoms, they ran in with a heart echo machine, then literally flung my legs into the air so I wouldn't pass out. It was actually quite comical when I thought about it later. After all this, yes, I had POTS, but there was more testing that could be done, which I had to ask for. I had to go back about a week or two later, to do the "hand in the cold water" test, among others. I really like Dr. Fouad as far as testing goes. She does really good testing. She talks with you and cares. She does not do follow up care, though, which has made it hard for me to get the care I need for my autonomic dysfunction. I hope the rest of your week goes better. Where are you staying? I'm at the Guest House. Lindajoy

Hi, Julie. That's what I was thinking, too, that my blood volume is low, low, low. It's so weird. I can get rigors after I eat, which was explained to me by a nurse that rigors come when the organs are deprived of blood because the blood is all in one other place, like the skin or GI tract. I just don't know who to see for this. I try to see neurologists, but they say it's not "their problem." Anyway, I get blue feet from dangling them too long, or in the cold (even air conditioning), and after eating. It makes sense about the blood volume. Would blood going to the GI tract be considered a fluid shift? And, fluid shifts can cause vasoconstriction, right? Linda

Hi, everyone. I've read here how many of you have blue feet with your Pots, from sitting. Questions: Do you ever get blue feet from eating? Does it hurt you when you have it, like a deep ache? Thanks. Linda

Thanks, you two. I'm glad it doesn't sound too awful to you two, maybe just another Potsy thing. Thanks, again.

Yes, I have it nearly all the time. When I'm feeling lousier than usual, it's worse. I have it right now and it's pretty loud. I guess I'm used to it because it doesn't really bother me anymore. Linda

Hi, everyone. I get so excited when my account works and I can post, especially when I'm really worried about something that's going on with me. Has anyone ever had this happen? You're fine, then you start feeling not quite right, then your chest tightens, like you're experiencing a spasm in your chest, then your arms (both of them) start to feel weak, your hands sweat, your heart may speed up, you panic, then it all calms down but leaves your arms sore and possibly your chest muscles? I've done this a few times and can't figure out what in the world it is. I've had my heart just recently worked up, with blood, EKG, echo and walking stress with injection, and both my home heart doctor and the heart docs at OSU Medical Center said my heart is in good shape. I wouldn't think a heart attack would go away within minutes, but I don't know. I don't get breathless during these episodes, nor does my chest actually hurt. I just feel like it's in a grip of some sort, and it goes down both arms, leaving weakness for a bit, then achiness. If anyone experiences this and knows what it is, please let me know. I'm starting to become pretty concerned. I have Addison's, and my Hydrocortisone level is probably a bit too low right now to control my condition, so maybe I'm having adrenaline rushes? Thanks for reading this and for any experiences you share. Lindajoy

Hi, everyone. A couple of weeks ago, I ended up in the ER with chest pain. My heart doctor was called and I was put through the basic heart tests: blood tests, x-rays, EKG's, stress test, echo. All normal. I was sent home, then two days later, the pain was much worse, so my heart doctor sent me to OSU for evaluation (mainly because he thought my mast cell issue was causing my heart to be affected and needed help should that be the situation). Well, all concerned said my heart was fine, but I'm still having the pain, so I got on-line and found information on costochondritis. This sounds like what I'm having. A number of years ago, my endo said I had some autoimmune disorder that was causing me chest pain then. I don't remember if it was costo or not, but I've had this on and off for years. For those of you who have costo, could I ask you a few questions? --Is your costo ever triggered by GERD? --As I was walking my stress test, I got a spot of severe pain on my right side rib area. Is costo triggered by exercise? --When I push on my rib cage, upper chest, right in the middle, the pain gets worse, and even worse still when I push on either side of the rib cage, on my ribs. This shows costo, right? --Can costo pain feel like burning, like reflux? --My pain can go to my back and shoulders. Anyone else? I've read some on costo, but there's really nothing like talking with others who have this. Oh, and I've read what can cause costo, and I don't have any of the "typical" things. I have been diagnosed with benign EDS, so can that be the cause of costo in me? Mine seems to come with my mast cell reactions and GERD. Anyone else? After all this time, I finally have a mast cell diagnosis, along with AI and POTS. But, the chest pain doesn't fit into any of these diagnosis completely, and I'm trying to figure it out, as are my docs. Thanks, everyone. Lindajoy

Thanks, everyone, for your replies. Is "excessive peripheral vasoconstriction" normal (is anything connected with POTS normal?) in POTS? I always thought vasodilation was what people with POTS had. What kinds of things (illnesses, diseases, conditions) can cause peripheral vasoconstriction? If my Beau's line on my right thumb is any indication of how many times I've had constriction, I'm living constricted and have been for over six years because my thumb is one big Beau's line and has been for years. Oh, and I'm sorry, but Julian Stewart and Marvin Medow? I'll have to look them up. Thanks! Linda

Every time I wake up, whether it be in the middle of the night or in the morning, I have this. I feel hot, panicky, my heart races, sometimes my mind does, I feel breathless. It's awful. When I'm in a flare of whatever is wrong with me, possibly mast cell, combined with my Addison's and POTS, these reactions are so bad, I hate to go to sleep at night because I know what I have to look forward to. I'm sorry you're having them. I know how terrible they are. Linda

Hi, everyone. I'm able to post right now, so I'm going to take advantage of it. I can't always post or comment, for some reason. Anyway, do any of you get cold after eating and turn mottled? I'm sure, with POTS, these are common symptoms, but I just want to be sure. Also, do any of you have Beau's lines on your fingernails? I do, on my thumb, and my pcp told me today that these are a sign of illness. I read that you can get them from low bp and shock, so I'm wondering how many of you, with your POTS and low bp's, have these lines on your fingernails, and if you do, do you or your docs attribute them to your POTS? Thanks. Linda

Hi, everyone. Thanks for responding. Rigors are the shakes, when you shake uncontrollably and you really don't have to feel cold. Yeah, Julie, my doc sent me to OSU because he was concerned about Kounis Syndrome with my heart. They checked it during my episode, and the EKG was fine. I've been on telemetry the entire time I've been here (5 days), and so far I've had a bit of atrial tach, but it looks good. I was glad to see that it stayed healthy during the episode. As far as the reaction goes, it wasn't induced to see if I could tolerate the green beans, like a food challenge. It was induced using green beans, a known trigger for me, to actually get me to react so the docs could measure the mediators that come with this reaction if it's mast cell, like histamine, prostaglandin, etc. I have to get the mast cell disease under control to get the reactions to stop. But, thanks, lieze, for sharing your reactions and information. Thank you again, everyone. Linda

Hi, everyone. It's been awhile since I've been able to post here (problems with my account). I'm still having severe reactions when I eat. I'm in OSU right now. Having reactions that are now affecting my heart. Well, my OSU docs induced a reaction with green beans and bread, two of my triggers. If I never seen another green bean in my entire life, it will be too soon. Anyway, they ended up calling the emergency response team as it got pretty bad. Let me tell you what happened. I'll make it as quick as I can. I at green beans, then bread, then some more green beans. After a bit of time, it hit me. I: --began to feel very lightheaded --got nauseous --just didn't feel right, can't exactly explain it --felt hot on my face and somewhat itchy in places --suddenly, it hit me, and I just didn't feel right, can't really explain why --started to dry heave --rigors started Emergency response team was called. After a time (many wanted me sent directly to ICU), I was given Claritin (can't do Benadryl), Singulair and then finally a large dose of IV prednisone. The rigors immediately stopped, the nausea took a bit more time but resolved soon after. How does this all sound to you? My bp went from 130's to low 100's, up and down, the entire time. An EKG showed no reaction in my heart. When I had the heart pain with it, it was when my bp had dropped from 133 or so to 115 quickly. Does this sound like something to do with autonomic dysfunction to you? My face was so flushed it felt burned and was very, very uncomfortable and the rigors were awful. I was being tested for a mast cell disorder. Oh, it didn't feel like my airway was ever affected, but my chest felt tight and at one point, I felt like I couldn't get enough air out of my lungs so that I could draw more air in. My doctor switched my steroid from hydrocortisone, which I take for Addison's, to Decadron. He said it would be better for these reactions and would cover the Addison's, too, which my endo agreed with. Thanks, everyone. Linda

Hi, everyone, again. I saw a rheumy at Cleveland Clinic yesterday for the livedo retic. stuff. She verified that, yes, that's what I have, but she doesn't know why. I'm not surprised as no one can figure out why I have anything that I do. Anyway, she said that people with POTS have it all the time, so that could be it for me. She said I don't have APS as my lupus anticoagulant, that was tested a few years ago, was normal. Anyone know anything about that? She said I don't have vasculitis, either, of any kind. She wants me to see a psych for an anxiety disorder. Good talking with all of you again. I'm so glad, as always, that you're all here. Sorry you have to be, but glad you are. Lindajoy

Thank you, everyone, for the replies. Yes, I look like a couple of the pics you sent, Reen, especially the first one of the arms. Do you have this APS? Anna, thank you for the info on eosinophilia. I've been tested for it already, since I have EE (of the esophagus), and have elevated numbers in my blood, but not so elevated as to be HAE. Mine are from food allergy, I guess, and some environmental stuff. Thank you all for the congratulations on being a grandma, too. Another reason, a very important reason, I need to get better! She's 20 pounds already and I can't hold her for very long, but what a doll. Thanks, again, Lindajoy

Wanted to add that the mottling seems to get worse after I drink some of my formula (I have to drink four servings of the formula that goes in my tube to get enough calories and vitamins daily as I can't take in enough through my tube). So, "eating" makes it worse. Thanks. Lindajoy

Oh, my gosh...HELLO!!! I have not been able to post in months. I'm so excited to be able to talk with all of you. Like coming home. Anyway, I don't have good news to share. My health has continued to deteriorate. I am now on a feeding tube and many, many medications, mostly antihistamines. I have yet to find a doctor who knows why I'm so sick, but I continue on. I do have some good news, though. Last July, I became a grandma. Milena JoyAnna, the Joy after me, my middle name. She's an absolute doll. I am experiencing some symptoms now that I would like to ask about. I have mottled arms, legs and sometimes belly and back, but mostly arms and legs, along with worsening neuropathy. I can't even shower or bathe anymore without feeling as though I'm being stuck by millions of needles or stung by millions of bees. I also have night sweats something terrible, and sweats during the day at times. Anyone know what maybe autoimmune illness could cause these symptoms? My body is now rejecting all foods, thus the feeding tube. I was going into what the docs thought was anaphylaxis. Then, I had an episode in the hospital and the docs weren't sure if it was anaphylaxis or not. Same symptoms I've had for years that I've posted here before. Anyway, I was kind of excited to have the mottle skin, as I thought this might be a clue as to what's wrong with me. Any ideas would be greatly appreciate. Again, I"m so happy to talk with you all again. I hope this finds you all well. Lindajoy

Okay, I'm a mess. In the hospital yet again. Had to have major surgery two months ago after I got pancreatitis and infection from an ERCP. Was in the hospital for seven weeks, nearly died twice. Anyway, took Benadryl last night, liquid, and went into bradycardia and irregular beats. BP also went up. After a short time, it went away. Can POTS cause this reaction from a usually tolerable medication? Thanks. Lindajoy

Hi. I have a question. Can chronic anaphylaxis show itself every time you eat? With MCAD, could chronic anaphylaxis, due to lack of MCAD treatment, be the reason for reactions after eating? And, could those reactions be odd, such as muscle stiffness to the point you are in severe pain all over, head tension and pressure to the point your ears inside hurt, sweating, shaking, coldness, feeling like you're going to pass out or have a seizure? Thanks.

I am from Ohio, Lima, and we have a refinery here, and also a chemical plant. I was diagnosed at CCF, Dr. Fouad. I've lived in Ohio my entire life. Linda

Thank you, ramakentesh, for explaining about salt and POTS. Makes sense, then, that I would react, given I may have carcinoid tumors, as well, which may produce extra epi and norepinephrine. I had an iodine blood test the other day, so I'm going to wait to see if I'm even iodine deficient to be causing my low thyroid. If I'm not, we'll seek other causes. I have a benign tumor on my thyroid, which may or may not be contributing, plus my carcinoid condition may be. I do not have Hashimotos, as I test negative to the antibodies and always have. I just recently went hypo, severely, and had many, many other symptoms with it, as well (not hypo symptoms). That's when they found the neck tumor, and I started to flush, etc., so was worked up for carcinoid cancer and found to possibly have it. I recently had the Oc scan to seek out where the tumors may be. Thank you, again. I spoke with my carcinoid support group leader last evening, and she said that she's found many, many people have a reaction to salt, for whatever reason. Makes sense if it is such a strong vasoactive molecule. I don't take salt, like I don't take most chemicals, because my body can't tolerate most chemicals for some reason. I also have Addison's disease, for which I take hydrocortisone, which keeps my bp up, as does my carcinoid cancer. Linda

Ain't that the truth! I never know what my body is going to do. When medical people ask me about reactions, I always have to say, "I don't know what I'm gonna do. Just be prepared." They look at me like I'm half looped. Thanks for responding. Hope you don't like miso soup too much, since you can't tolerate it!!! Linda

Okay, this may sound weird, I know, but I'm serious and am very upset and don't know what to do. My thyroid has gone south. My endo thinks it may be from lack of iodine in my diet. She wants me adding salt, which I have not had in over a year. I got some sea salt with iodide added, and tried it at supper last night. After about 30 minutes, my legs got tight and I felt a little shaky, but otherwise, okay. Then, around 1:48 am, I woke up suddenly to go to the bathroom. When I got back to bed, I couldn't sleep, and I felt like my muscles were all tight, especially my diaphragm, making it hard to breathe. I felt a bit shaky, too. I slept on and off the rest of the night. This morning, I'm shaky, again. I know salt is a chemical and acts on the nerves. Could I be experiencing some symptoms because my body isn't used to it? Can anyone explain this to me? I feel like I'm pathetic, not even being able to handle salt, but I can't take the thyroid meds, and this may be my only alternative. Thanks, everyone. Linda