Maiysa

You are welcome Corina! Hope you are feeling well.

I hope this wasn't already posted. It's about 2 pages or so long. http://www.mendeley.com/research/mast-cell-activation-syndrome-proposed-diagnostic-criteria/#page-1

I just read the same thing in a medical journal Issie about asprin causing degranulation of PGD2 making asthma worse. Not sure what it means in the scheme of things. Maiysa

Christy, I hope the asprin helps. Let us know how it works. I just read that the test I did, beta PGF2 is a metabolite of PGD2. I guess they are both helpful in diagnosing a few things, and mast cell is one of them. Thank you, Maiysa

Thank you for you post Christy, But sorry to hear about your son having these issues. Poor guy and poor mom. Not easy to deal with I know. But so glad you are able to see Dr. Afrin. That's really great to hear. He sounds amazing. I am pretty sure the test they did on me was the PGF2.?? Prostaglandin F2. I think that's it, I'm going to have to look again. But I can't take asprin anyhow. It really did a number on my autonomic system. Just a tiny baby asprin really messed me up. I'm not sure why the doctor didn't test the PGD2. I went to an immunologist who has worked with Dr. Akin, who I believe deals with mastocytosis. But I could be wrong. Did your son also have elevated tryptase levels? I'm waiting on the b-tryptase which takes 35 days to complete. I already did the regular tryptase and it was elevated. Thanks again and I hope you have a healthy evening, Maiysa

Lemons, I watched the documentary CRAZY SEXY CANCER a while back and learned about juicing. One does not have to have cancer to be interested in this movie. It's a great documentary. Kris Carr is amazing. I think everyone on here can relate as she goes through her journey of not knowing what's wrong and being sick and trying to help herself. But it has a happy ending. Anyhow, I also bought her book Crazy Sexy Diet-not a diet but a way of life. She has some great juicing advice in there and lots of other wonderful health tips. It's a beautiful picture book too. I can't do the juicing to the extreme that she does, but I add the alpha lipoic acid to mine and I think it really has been helping my nervous system. I do both juice and blender. I bought a used vitamix on line and also put a bid in on a juicer on ebay and got a very nice one. I love the flavor of the juicing better, but I also need the fiber with the blender, so I go back and forth. The juicer is a bit of a clean up, but worth it. I have my favorite concoction of kale, carrots, ginger, an apple or pear, (1/3 of a banana if you blend) and a dash of cinnamon. IT's so DELICIOUS. I crave it every day. It helps with inflammation and to keep me regular. I can't take the gastro paresis meds, and this is my healing drink. Of course it's not the cure, as some days are still not fun, but it has been a HUGE help. I also found out the hard way that one can't start out too fast with this stuff. Someone gave me good advice, to make a nice glass of it and sip it throughout the day. I don't know why, but my stomach just couldn't handle it alone, unless it's late in the day and my blood sugar is level. I also add my alpha lipoic acid and vitamin E and it's a wonderful supplement for me. Also, I buy the $1 jelly jars at any hardware store or walmart, and I keep my juice in there for up to 48 hours, that way it's nice and air tight. The Jelly Jars are wonderful and look pretty and green in the fridge. And I just pop them in the dishwasher after. Happy Juicing!! Maiysa

Whoops...spelled prostaglandin wrong. I'm not sure if anyone gets this test, I had never had it before. Mine was the 24 hour urine prostaglandin f2 and the high for the reference range was 1,000. Mine was 1240. Has anyone had this or knows what it means? The nurse called today and just said to take more histamines and they will recheck it in 2 months. I'm already on histamines. So am confused, but will continue to do so anyhow. I was not given a diagnosis or told what it means. I also had an elevated compliment test CH50. Doc said I have a lot of inflammation. Anyhow, just seeing if anyone else has had this test come back abnormal. Thanks! Maiysa

Oh my, the lazy thing. So sorry, most people just don't get it, since it's an invisible disease. And to top it off, so hard to reason with a drunk too. Hang in there. Do what you have to do to get through this chapter in your life. Can you ask someone to drive you to your appointment? I know it's hard to ask, but worth a try. Will say a prayer for you to give you strength. Maiysa

I started fainting at age 9 after a difficult stomach infection that kept me in the hospital for a few weeks or less. I was misdiagnosed with petite epilepsy. I started having what they called hypostolic shock, in my 20's. Basically my blood pressure dropped too low, causing my body to go into shock. But it only happened every few years with an occasional grand mal seizure; fortunately it never stopped me from doing anything. But developed a hyper form of POTS in late 2006 after a fungal infection in my lung, which later turned into autonomic neuropathy and now some mast cell issues. Just found out I have hypermobility joint syndrome also. But POTS has subsided, but still have orthostatic intolerance. I'm a member of a native american tribe in the midwest and this is my dominant gene and along with French, 1/4 Swede and lil Irish, Scottish and tiny bit of Jewish. I'm basically a mutt with olive skin tone. I have researched and can't find any genetic correlation so far with any particular race with these disorders.

Hi Littleangel, Welcome to the group, wish it was under different circumstances. So sorry to hear of all of that you are going through. It's not an easy road. I think we can all relate to the friends disappearing one by one with these issues. It is a hurtful thing to go through. Also, sorry about your boyfriend. That is terrible to hear. I am sending you a cyber hug and lots of healing prayers. Maiysa

Oh, the ACE test. I remember that one. They kept doing the ACE test over and over with me because of lung nodules that ended up being a lung infection and I was also covered in nodules/erythema nodosum for months. I was actually diagnosed with Sarcoid for a while until Mayo figured it out the lung infection was from a fungal spore. I hope and pray that you have some type of answer soon. Please update me or us when you do find out. Hang in there. And so sorry to hear of your issues. Maiysa

Hi Hoosierfan, I think I've mentioned this before on here, but magnesium sent me to the ER. I took just one tiny half dose and it threw the dysautonomia into a frenzy and my blood pressure was all over the place. It was awful. So no more magnesium for me...but my muscles didn't hurt. haha. So it wasn't for nothing at least. Wish I could take it.

Sending a prayer for Kayla and her family.

Wow, Lemons, that sounds awful. I actually went into convulsions and passed out with the contrast and they shot me with an epi pen. Most people with this can't handle the contrast. Yikes. I wouldn't try that again. They told me I went into anaphylactic shock and also told me to take some benadryl when I got home and I felt fine, a little dizzy for a few days but fine. But everyone is different so don't take those meds if you can't. May I ask why they tested you for sarcoid? I was also tested a few years ago, but got a CT scan without the dye and a blood test. I had lung nodules and nodules all over my body. Where you having lung issues? Hope you feel well soon. Maiysa

Sorry, also Libby. I've been there and this was a hurtful thing to have to go through. It's very hard when one doesn't get their mother's understanding with these issues. It's extremely hurtful. Sending you a cyber hug.

Sorry MIchelle, I get tiny itchy bumps just once in a while on my toes, and they go away very quickly. And it's maybe every few years. I just thought maybe it was allergies or something. But I suppose it could be possible that it's mast cell, but lots of people have these skin issues, but not sure that it strictly means they have mast cell since itchy bumps could mean a lot of things. But..... I have noticed that it seems that if anyone has POTS anymore, it's almost like mast cell is the contributing factor. Do you have other symptoms of mast cell as well? Also, have you been tested for rheumatoid arthritis? Or have you had an RF test? But not sure rheumatoid itches. But the knuckle made me wonder. I used to get lumps, but it was erythema nodosum and was told it was because I had an infection in my lungs. But now that I look back I wonder if the mast cell was causing the erythema nodosum nodules. They itched like I had never itched before too. I wish I could put a picture up to see if this is what you have. But have not figured how to do that. Okay, good luck to you!! Maiysa

Hi Diamond! I just wanted to say maybe with the diabetic issue, you have to make sure your kidney's are okay. I don't have diabetes, but my doctor checks my kidney function before the MRI. Maybe this is routine for everyone. I am so sensitive to everything now, so I refuse the contrast. So far they have been able to see everything they need to see without the contrast. But I'm sure it would be a better picture if I was able to do the contrast. Be sure to talk to your doctor about it. Have a great day Diamond.

Abby I just wrote a post about this on the IMAX post. I ended up in the ER with this. I feel terrible for you, but selfishly glad to know I'm not the only one. I had a terrible reaction to Magnesium (I think it was citrate and only took 1/4 to 1/2 teaspoon )and ended up in the ER. I started feeling faint right away and like you said very jittery. My heart rate was so high and blood pressure too by the time I finally decided to go to the ER. It made me feel so sick. I used to be a hyper POTS girl but now it's calmed down and but still have the orthostatic issues. I wonder if we are just more sensitive to the over stimulation. Also, I know there is some connection to my GI track because that is where some of my issues start sometimes. Anyhow, I wish I could take it. IT sounds like it helps a lot of people. Maiysa

Can I post on here..I don't have POTS anymore, but I'm very sick with orthostatic intolerance and autonomic neuropathy, mast cell and hypermobility. I had a terrible case of hyper POTS for about 3 or 4 years and couldn't stand up for more than a few minutes or even sit at the table to eat. I feel for all of you!!!!. I read every post and you are all incredible. Beautiful heartfelt stories. This has caused me to build a better relationship with God. Also, I don't take one healthy moment for granted. Trivial things that I used to think of as so important are so silly to me now. I've seen a different side to my husband and it has reaffirmed after 25 years, I've married the right guy. I appreciate having health insurance which I wish for all. Chaos, your post made me laugh so hard!!! I appreciate being able to push a grocery cart too. That was one of my worst issues and still gets me some days. I never thought I would be so excited to make it through the grocery store without the ambulance coming. IT's lovely to be able to buy groceries!!!!!! Maiysa

I know I've posted this before but I took magnesium in a powder form. I'm really sensitive, so knew to only take 1/8 of the dose which was about 1/2 teaspoon. I got so sick instantly and started flushing and had to go to ER. My muscles felt paralyzed. They couldn't find anything wrong except my bp was out of whack and heart rate went through the roof. Doc said he had never heard of anyone having a reaction to magnesium before. But he remembers seeing me in there before for strange reactions to foods and herbs and vitamins and meds. haha. Anyhow, I took pepto bismol once and it did the same thing. I think it was citrate that I took. I took the one that is easier on your stomach. Even when I was well I couldn't take it very well without a stomach ache. Anyhow, am I the only one with this reaction. But the good thing my muscles felt paralyzed so they didn't hurt anymore which is why I was taking it. I'm kidding, but it's true. Maiysa

HI, Good luck with your appointment and I hope you get some answers that you are looking for. My insurance doesn't cover Mayo either, so he was so wonderful about working with my other doctors for tests that I couldn't afford at Mayo. But he did prefer me to do the Qsart there since most places don't carry it anyhow. And he thought that would give me a diagnosis since the TTT didn't. And he was right. "PM me for more details on how I worked out payment, if you wish" talk with the girls at . Dr. Goodman is such a good listener also and understands. He is starting to have a few patients with all three issues of Mast Cell also and EDS so if you have that he is aware but not sure how much yet. Issie, so glad you were able to give him the book. Maiysa

Yikes, I would get that checked out Puppylove. I once had one close to where I had my blood taken, but it burst and it ended up being something common. But I would not mess with it if that is not the case. Sorry wish I could help you more. Always check with your doctor on those things. Maiysa

Elegiamore, Your post made me feel so terrible for you. Hang in there. I hope you are okay. This too shall pass. I'm going through this as well still 6 years later and it doesn't seem to change. I had more comments than usual this week and just after I was bragging that I still had my childhood friends. I have a friend telling me that she healed her autoimmune disorder by just ignoring it. Ahhhh. It makes me crazy. I think it's easier to ignore something if it's not affecting you on a daily basis. Also just a few days ago, I wrote my best friend a note to tell her that I'm on my way to get an MRI as they thought I was having a brain bleed. I told her to not worry about it because I was sure it was just a sprained occiput. She wrote back but didn't mention it, but did tell me that she's reading self help books about being positive and that she can barely stand negative people anymore and that she realizes how much control she has of herself now. I don't know if that was meant for me or what, but I'm really sensitive to these things now. I have realized that I might need a counselor because I don't know how to be sick, although I've done it for 6 years, I'm not very good at it. IT's not who I am as I'm sure it's not who any of us are or thought we would be. I was always the happy go lucky big lover of life. But I'm obviously not that girl anymore, and I'm sure it's hard for them too. But I would never abandon them. I had three best friends, but one just turned so mean one day and I asked trying not to cry, why are you so angry with me? And she said, and I quote, "I'm sick of your sick arse!"(sorry can't swear on here, but you get it) I thought I was going to die. You would have thought someone died the way I took it. I never saw her again. This is a girl who went through terrible depression and I spent hours with her on the phone helping her till all hours of the night, making her doctor appointments, consoling her non stop which by the way got exhausting but she was my friend and I loved her no matter what. But when I got sick, well that was the end of that. But maybe that's for my benefit so I can make room for real friends. I'm going to quit even mentioning anything if I can to my friends and family. I don't want to explain anything any more. I'm over it as I'm sure they are. I obviously need to change something. I guess all I can control is how I react to my illness. So so hard to do. PS I'm not lecturing you, sorry if it seems that way, I'm saying this out loud so I can try to help myself. I think once I get a complete diagnosis I won't have to focus on it as much. I am so grateful to the blogs as they help a lot. Nice to have a safe place to go. And to have support. Hang in there. I promise there are some wonderful people out there. Hugs to you. Maiysa

Thank you for posting Bananas. I looked it up and had it on my wish list for amazon. Will order it. Thank you!!

Aw, Steph, hang in there, it's not that bad. My test takers were funny and made me feel so comfortable. I hope you have the same. For me I passed out the entire trip there. I have never been so sick. My blood pressure was dropping to the 30's and not even showing up on some bp cuffs readings during episodes that would make me violently ill. I didn't pass the poor man's tilt table, the blood pressure checking with supine and standing. The hospitals and doctors saw it, but when I got on the TT, NOTHING. Not a thing. Doc said it just wasn't my trigger. But it did show abnormal on the Qsart test. But I hope you get some answers. TTT don't always show the issue, but for MOST it does. Good luck.