Maiysa

So glad you can chuckle at such a yucky situation. IT helps doesn't it. Okay, yes, physiological makes more sense. Oh my gosh, I am surprised that you have not had a Qsart test. Check into it if you can. I know Mayo has one. I had mine done at Mayo in AZ. It's something like a TTT, but with no injections...thankfully. You are ran through a series of tests and the electrodes or wires, are hooked to your legs and arms if I remember right and it measures your sweat and blood pressure etc. while tilting and deep breathing. If it weren't for that machine right now, I swear I would feel like I was crazy, because nothing was showing up for me on anything. But people with my disorder have low sweat which is a sign of a dysfunctional autonomic system and I had 0. Which means mine is really damaged, but only in certain areas. It was hard to find a machine though. Not a lot of hospitals have them. I have found about 8 in the US. I had to pay out of pocket and I want to say that it was anywhere from $700 to $1,110. Something like that. I could be a few hundred off. It's been awhile. I had a negative TTT so this was more helpful for me. Maybe you could bring this up for them to get you a test. There are treatments....if this is the problem. I unfortunately can't take them, since I've had a fungal infection. But at least we know more of what we are dealing with. Not saying this is your issue, but it's good to rule it out. It is really rare to have I have heard.

This is great information. Will try it. I do healing yoga when I can...(I can it yoga for whimps) and it's so helpful, but am always looking for different solutions for pain. Thank you very much for posting. We actually used to do this in my college theatre days for a relaxing technique. If I didn't do it, I would have been a mess, never thought to try it in this situation. Great idea!!!!

Wow, that is incredible that you have the same situation. I have to tell you when I first got sick, I was flushing so much after meals too and I developed dumping syndrome. It was terrible. I am 5'6 and at the time weighed about 128 pounds at the time, but after the anaphylaxis I was weighing in at 110 for a few years after. I looked like a skeleton. Could not stand up without blacking out or make it up the stairs. It ended up being a terrible lung infection for two years... and once we go that under control the POTS got better and my diagnosis was taken down to orthostatic intolerance but I was still a mess. Then I had thyroid cancer and toxic thyroid, probably left over from the lung infection and now autonomic neuropathy with crazy fluctuations in my blood pressure, especially in the summer months. ANd it all started with some hives. I'm really grateful to be here today. IT's a miracle. I hope they can find what is causing your situation. I will look into those other diagnosis. I know Mayo in Arizona did a lot of cancer checks. The carcinoma syndrome sounds familiar but am not aware of the other one. Happy Holidays and I hope you feel well!

Yes, what is this organic thing that the doctors are talking about? Did you tell them you're not a piece of fruit! Of course it's organic if it's happening. Who would want to create these reactions. Seriously. Have you ever had the QSart test? That showed most of my problem. It was a bit pricey but well worth the answers. Merry Christmas too! I hope you are feeling well today.

Question? I might get this wrong, but I thought I read on this blog that if you have allergies then you don't have MCAD. Is that right? I did the blood allergy test when I went into anaphylaxic shock in 2006 and it only showed peanuts which I had not had any. Then I went into anaphylaxic again a few days later. Anyhow, so I have allergies obviously. When I was a kid I did the needle poke allergy test and of course they all swelled up and they said well you are just slightly allergic to a lot of things but nothing seriously. Anyhow, my question is....if I have allergies then it's not MCAD? I had a slight reaction last night and went to go get the tryptase test early this morning at Quick Care, but they opened too late past my reaction and the nurse on the phone said today was going to be like black Friday at Walmart when they open those doors. So I just took a children's claritin instead. I have been up most of the night and have so much to do today and trying to stay awake for Santa tonight is a lot.

Oh, I'm so relieved to hear I'm not the only one who reacts badly to my own hormones. It's a terrible feeling. But sorry for you too. I recently did a progesterone insert (Crinone) to help stop my cycle and it helped so much. It's been a few months...knock on wood. I hope they are gone for good. With periods, I'm sick for weeks after, my body goes into over drive. It feels like very cell in my body is vibrating, like an on button has been turned on and won't shut off. I get so dehydrated, nauseated and just plain sick. But I love the Crinone-progesterone insert, but I read that the company is going broke. I called the local compound pharmacy and they told me they could make up a dose of it for me. But hopefully I don't need it anymore. I'm holding my breath that they are gone. I tried the Nuvaring and it was a bit much for me. Glad the Depro worked for you.

Issie, sorry, I wrote the name Carol, but meant to write Issie. I'm always in a fog. Sorry about that. Anyhow, thank you for your kind words. I haven't acted in years, because I get too dizzy, so that's out. But I was a writer on my off time and a skin care specialist full time. Hoping to get back to that someday soon. Thank you so much for the information about the bone marrow biopsy. Oh my gosh, that does sound terrible. I agree with you, just being treated as if it's positive is better than the bone marrow. This is interesting that you say this, because I realized this summer if I took a little bit of children's claritin, it helped with my flushing. I might just do that since that's all I can take anyhow. Katie, I was going to tell you that I used to take allergy shots about 15 years ago. And I developed serious side affects and developed hives. I had to quit. So yes, you have to be careful if your immune system is over reactive. And for me the shots did nothing to make me feel better prior to that. But maybe other's have had better luck. Cheers!

This sounds so nice. If I wasn't so far away and could drive I would go. So nice of you to organize Potsgirl!

Hi Carol, Yes, I can't take aspartame as well. I get very sick. Actually, the children's ibuprofen is the only thing I can take. IT's the adult meds that I can't take. I have tried Aleve, but I get so dizzy and asprin and motrin. It's really silly. I don't have pots, but did have hyper pots while I was in the midst of a lung infection for 2 years. But now it's dx as orthostatic intolerance and autonomic neuropathy. Although when I stand up my blood pressure goes up, not down. And sometimes it goes down. It doesn't make sense. I did see on one paper about MCAD that it can cause a neuropathy. NOt sure if that would be related. Also, a question for you, did you have a bone marrow biopsy? If so, does it hurt terribly? They did mention that I might need one. Ugh! I did have a spinal tap last year and as long as it's not as painful as that, I'm okay. But if it is, I will just have to suck it up. My shins hurt terribly, but I think it's from long bouts of anemia. Anyhow, thank you for your information. Maiysa

Oh that sounds terrible....choking fits. Bless your heart. Yeah, hyper reflexia of the limbs. I had not heard of that but it does sound awful. When I have the episodes my arms will become paralyzed and then they fly up. I have came out of a black out to with my arms in the air. The people at the MRI place were saying...what is that? Like I was some kind of freak. It was from the breathing test that did it. Anyhow, that's where they came up with dysreflexia. Anyhow, I know what you are saying about the street lights. I'm only 47 and have stopped driving at night. It is really scary for me...unless the moon is out, it helps to light my way a bit easier. I was at the Apple store to get some help with my computer and it happened in there also, which makes it the 3rd incident. I can't tell if it's just too much stimulation with all the computers and people or the noise or the heat, but it is definitely the perfect storm. Anyhow, feel better soon. And I hope you get some answers. Happy Holidays and Merry Christmas to you.

Thank you Carol and Julie, this is all very helpful. I am going to call Juanita Anderson in California to see if they take my insurance. Just to get some different testing. Carol, I see you wrote that the level of 11 is considered possibility for MCAD, so interesting since my doctor said don't worry about it, it's nothing. Also, I was not having any incident at the time, so maybe that's my norm...I don't know. But thank you...even though your PH.D is in an unrelated field it helps. Does it count that I used to be a nurse on Chicago Hope? haha. Just a stand in and extra. May I ask, do you still work? This is a terrible situation to be in isn't it. I have not been able to work for 5 years and I made such great money, so it's my dream to get back to work someday..soon! Thank you Julie for the awesome articles. Very helpful. You are so thoughtful to post them.

HI Tinks, I don't know what organic means in this report, but it looks like he is at least considering some possibilities. But....I am curious and hope you don't mind me asking but do you have any type of spinal injury? I ask because I was also told I have episodes that they call autonomic dysreflexia which is another name for hyper refelxia. I was told by the neuro that it's usually in people with spinal cord injuries in which I have none. But this is a terrible episode and I have almost not made it a few times. I was told I'm not getting oxygen to my brain when these happen. Sometimes I turn blue. This can be brought on by medication, a cold or flu, or a car ride. And I feel terribly drunk afterwards and on many days. I'm curious to see what they find with you. Do you also have these episodes?

Yeah, Katie thanks for pointing that out. That's a good observation I think I just need to go to a specialist. This doctor didn't seem like he wanted to get into the MCAD thing. I see there is a specialist in California. We live in Nevada, so maybe I could try to get in there. It sounds like it's a lot of complicated testing for a doc who doesn't want to deal with it. Can someone tell me what an acute attack would entail? It seems that my immune system just keeps going on fight or flight they are calling it. But it's weird when I get my monthly cycle, I get a rash in my pelvis area and thighs. I get violently ill. I swear I'm allergic to my own hormones. Sorry if that is TMI. When we stayed in California a few months ago, the smog was very high, and my face swelled up terribly and I went into some violent reaction of vomiting and lots of bathroom breaks. I begged my husband to take me to the hospital. But of course after 5 hours it passed. This does happen from now and then. Next time I will just go to the ER and ask them to do a tryptase test or something. I find it hard to ask doctors to do a test, I feel they think I'm stepping on their toes or something. Thanks Katie.

Issie, Thank you so much for the update. I know I've told you this before, we have many symptoms in common. I was curious what the doctors would find in your case, but of course it sounds like you didn't really get anywhere. But it's nice that they are treating you anyhow and trying to help. He does sound like he cares. So unusual to find. I'm sorry you didn't get more answers. I know it's probably a bit disappointing for you. Do you also see a dysatuonomia doctor there? Not sure if I've asked you that before. I would worry if I had this MCAD, because I can only take a 1/16 of a children's Claritiin. It does something neurologically and makes me stiffen up and have some strange flushing in my head. I suppose it wouldn't matter anyhow if I got diagnosed. I'm also on a tenth of a children's dose of zantac, terrible stomach issues. Although this medication makes me feel better it also gives me some strange feeling. And I ended up in the ER from the nasal spray Flonase. My system went on high alert and my lips swelled. So strange. How could I be allergic to allergy pills? I guess anything is possible. Thank you for posting Issie. I hope you feel better soon. Sorry you are having to go through this. Wishing you a Merry Christmas and Happy New Year. Maiysa

Thank you very much Kate, Katybug, Issie and Julie. Thank you for the videos Katybug-very informative. Issie, I will look for your post. If they have a doc at Mayo in Scottsdale that would be very helpful. Also, Julie, I'm sorry I didn't answer your questions fully. I do have some allergies, but I know most of them and do my best to avoid the triggers. Also, I did go into anaphlyaxic shock twice in 2006 and had hives & erythema nodosum from my ankles to my temporal lobes for a long time after. I was told I was allergic to a fungal infection in my lungs. And since then my immune system has never been the same-my life changed over night. I am not on any meds except thyroid. I have just worked my way up to children's ibuprofen. I flush and black out with most medications. Even Gas X. Silly but true or else I get over amped from them and start shaking, once my lip swelled from nasal spray-Flonase. I was thinking about what you said about non narcotic pain killers. Do they affect MCAD or is it just to be safe and take non narcotic? It's weird but after my thyroid surgery they gave me demerol, I had taken this many times before with no problems, but this happened....my muscles froze and I stiffened up and I was yelling for help and then everything went black. It was so scary. They injected something in me and I don't know what it was but it made symptoms stop instantly. Was I allergic..or was it just a strange reaction due to the autonomic neuropathy? Anyhow, they said, you are allergic to demerol and don't ever take it again. And now just all medications do the same. Hmmmm...Anyone have this? Sorry so many questions.

OH Thank you for your replies. Yes, Julie that information was very helpful. I'm outside of the Las Vegas area. I go to Mayo in Phoenix for dysautonomia when I can afford it. Our insurance doesn't cover it, but Dr. Goodman is wonderful about having my doctors at home do the tests for him. Anyhow the normal levels on the Tryptase blood test had normal listed as 1-10 and my tryptase result was 11, so he said since it was only slightly elevated it meant nothing. So he took that off of the table. He said we can come up with all sorts of names for what you have, but we just need to treat the worst symptom right now and for me that day was pain. So he is ordering some pain meds...not sure how that will go since I can't take Aleve or even Pepto Bismol without flushing and blacking out. Anyhow, I don't know where to go to get better testing. I have a really hard time traveling, my immune system goes on high alert and I black out and have seizures so I can't travel for more than a few hours. What about California....anything there? Thank you all so much for your help.

Well, so glad to hear it's somewhat of a better day. Venting is healthy. Yeah, I wish there was something to help you with the anxiety. I understand what you are saying when you say, yes, you have anxiety but.....it's not the major diagnosis. Hopefully you can find the right doctor real soon. I had doctors say the same thing to me, but a person knows when they are not feeling right and when it's beyond an anxiety issue. Keep trying to get to the bottom of the issue.

I got sick the first few times I took the iron, but my body is getting more used to it. It has helped with the dizziness so much. Of course not completely...but a lot. Also, I missed a few days of iron and I felt really drunk. It was weird, so I didn't realize how much it was helping. My ferritin was down to 1 and they wanted to do a blood transfusion, of course I said No, let me try the iron first. It took a few weeks, but it did help. I hope you are feeling better.

Atomic, How are you feeling today? Your quote about Debbie Downer made me laugh. Sometimes I'm Debbie Double Downer myself. Hope you are having a better day. Maiysa

Atomic, I'm so so sorry to hear of your mother's passing. It sounds like that was a very tough week. Amazing that you are hanging in there. I was raised by someone other than my parent and it was terrible for them to pass away when I was only 19. I know it's got to be tough. I was dismissed by docs all the time. And I kept going because I knew I was sick. Everytime they told me I just had anxiety, I just had to say...okay, he's not the doctor for me. Although sometimes I got quite upset, so that is easier said than done. I went to Mayo and that's where they finally figured it out. But a good neuro was the key to getting me there and having some kind of clue as to what it was. IT's not an easy condition to diagnose, so hang in there. Anything dysautonomia is hard to diagnose. I had symptoms for years but severely the last five years and it took them four years to figure it out. Also, I react to everything. Even pepto bismol sent me to the ER...also a simple over the counter nose inhaler put me in the Quick Care. Yes, I'm a lot of fun. But I have to tell you the tilt table test was not nearly as bad as I thought it was going to be and I didn't have a single reaction to it. And the guys who did the test were pretty funny. I didn't even pass out-which was strange since I passed out the entire car ride there. But anyhow, all the other tests I did for dysautonomia were pretty easy after all the tests I've had in the past five years. I also get anxiety once in awhile when I would see a doc. I really have got into meditation lately and it helps. You can download guided mediation on you tube. IT's worth a try. YOu hang in there. Rest rest...tomorrow is another day. Maiysa

Sorry to chime in on your thread...but I've asked this question twice on the board and can't get a response. I have read every MCAD thread and just have a quick question if someone can answer. I read that even though tryptase is normal, people still are considered to have MCAD. I wanted to ask how did one arrive at that diagnosis? Also, if my tryptase level was 11 and the normal is 1-10. Is that an indication of something? The allergist said, it doesn't mean anything and didn't do another test for MCAD. Said, he doesn't think I have it. I was sure this was my problem after a few people wrote to me to tell me to check into it...but what do I know. Just trying to figure out why I'm flushing and having sweating reactions to everything from food to menstrual cycles, to just being too happy or too tired.

H All. I tried to ask this question but didn't get a response. Trying a different way to word it. The allergist said that it doesn't sound like I have MCAD but agreed to do at least a Tryptase blood test. I just got the results back and he said that yes, that I have tryptase but it was only 1 number above normal and that a person has to have extremely high levels to be positive for MCAD. Is there another way to test for this? Or is that it for testing for MCAD? Every time I get slightly out of balanced, hungry, tired, having allergies or dehydrated, flu or cold etc. I start flushing all over or feel like every nerve is vibrating. I mostly flush after eating. And I get an intense feeling of fight or flight and start to sweat which can last for hours, which is not normal since I have autonomic neuropathy and basically can't sweat. But since it's winter, I do much better with this. I don't know what it is. Any MCAD advise on getting a diagnosis? Or am I off the mark here? Thank you.

I am wishing you good luck and good health. Will be thinking of you. I just said a lil prayer for you. Keep us updated. Warm Hugs! Maiysa

Went to allergist and he is checking me for MCAD. I keep having flushing for several years since I've acquired the idiopathic autonomic neuropathy. But of course 2 weeks before tryptase blood test I am feeling surprisingly good. Anyhow, my test showed only 1 point above normal. Normal being 1-10. So it was an 11. The doctor said, well you have tryptase but it doesn't mean anything. He was very compassionate and said it's obvious that you don't feel well and we need to give you a better quality of life. I'm having so much pain and headaches so he is going to try a few things. I can tell he cares. He said he is aware that I had a serious lung infection for almost two years and it has kicked my system on high alert and we need to calm it down. So none of this was the problem, but I noticed he wrote on the diagnosis besides idiopathic autonomic neuropathy, orthostatic intolerance, thyroid disease, cancer, fibromyalgia, recurrent lung infection that he wrote...neurocirculatory asthenia. I looked it up and it means anxiety related. What??? I'm confused since I'm not an anxious person nor have I ever ever gone into hyperventilation or had a panic attack which is part of this diagnosis for neurocirculatory asthenia...but when I'm going into fainting spells and some of them cause seizures, yes, then I do get anxious or if my thyroid is too hyper. But never ever have I hyperventilated or couldn't catch my breath which was part of this new diagnosis. Sometimes I faint from just sitting on the couch doing nothing. It has nothing to do with anxiety. So now on top of all those diagnosis's, I now have psychosamatic. I don't even get upset anymore. He was very kind and said, that the autonomic neuropathy type that I have is very rare and can make me not feel good....but I'm wondering why the psychosamatic diagnosis if he knows I am sick. I wish to God this was in my head. Then it would be easy to fix. I only went to him for allergies and he started checking into things. I can tell he wants to help, but he said nothing is showing up in my blood work, so there is nothing. It made me laugh, because I thought, wow...aren't all of those things you wrote down enough!

I have the same as Julie where my blood pressure goes up and down when I stand up. It's not all the time, but when I am tired, or have a cold or flu or menstrual cycle...etc. Anyhow, I have had this since I was about nine along with the fainting and was diagnosed with petite epilepsy. Then of course 5 years ago got the terrible lung infection, my life was never the same. So it's obviously always been there, the dysautonomia. And now I have idiopathic autonomic neuropathy, but I just found out from Mayo that it's only half of the situation. I thought we were done diagnosing. I guess I misunderstood. So we found a great immunologist in Vegas. So he is trying to fit the pieces to the puzzle. But I woke up with a new symptom and my finger was sprained for no reason and now I have some bruises around my knees and ankles and my hips, although they are 47 years young, hurt like I'm 100. But it's still a good day. I'm not sick to my stomach or having a migraine. Funny what good days are now. Peace and health to all. Oh, and they took the petite epilepsy diagnosis away. I didn't need it anyhow.