LindaJoy

CharmedLinz, my brain aches just reading all this! Yes, I've had carcinoid ruled out. I have an allergist who says he still thinks I have a neuroendocrine tumor somewhere, and he doesn't care what the tests show. I've had two elevated Chromogranin A tests, that's why I've had the Octreotide scan twice. Both times, a thyroid nodule and my uterus area lit up, but both were dismissed. I feel like I just keep going in circles, never really ruling anything out positively. It's frustrating. Hang in there and keep us posted on what you find. Lindajoy

Lyn, Wonderful information. Thank you so much for taking the time to present it all here. I'm like you in that, I flush so badly I look sunburned. But, with having gray hair, I've been told by docs, "Well, at your age, your skin is getting ruddy." Ruddy???? But, when the flushing goes away, I have clear, fairly nice looking skin "for my age." Carcinoid and pheo have been ruled out in me, as well. And, I don't have to have eaten or be standing or have any known trigger to flush. I can just be sitting, watching tv, and I will flush. I think mine will come on with hormonal changes, as well. Sometimes, it's rather embarrassing to look like a tomato--a ruddy one, to boot! With my history of flushing, hives, asthma, anaphylaxis, dermatographism, GI manifestations since I was four years old, I just can't help but think that I have a mast cell disorder and one day, it will be found. Hopefully soon, with Dr. Afrin now helping my pcp with my testing. And, I have to agree with you wholeheartedly about the neuros not being very knowledeable about mast cell issues, period, let alone have made a connection to neurological conditions as yet. I have seen a doctor in nearly every discipline out there (I am not kidding), and most have said to me, "I see mast cell has been looked at in you. I can't speak to that, as I'm not a mast cell expert." So, the heart doctor does not tell me that my arrhythmias or tach or bradycardia is being caused by mast cell issues, because we just don't know yet, nor does the neuro say it about my POTS, or the rheumatologist say it about my arthritis like pain, etc. But, some day we will find that common denominator (I pray), and it may well turn out to be mast cell. I actually do have a heart doc right now who thinks some of my heart issues are from mast cell. There's a condition in mast cell patients that can cause direct heart malfunction (ugh, can't think of what it's called right now--anyone?) We're keeping an eye on that. Well, I've blabbered on and on enough here. Take care, all. Lindajoy

Hey, Claire. I have a long QT syndrome problem with my heart; many meds can lead me into tachycardia. Benadryl, unfortunately, is one of them. IV benadryl sent me into V tach one time, so severe, I thought I was going to die. I use Allegra and Claritin. Neither one bothers my heart. Now, I use a low dose. 60 mg of Allegra a day, and 5 or 10 mg a day of Claritin, if I need it, so I don't go crazy with it, but I don't find a heart reaction with either at these doses. Have you tried either one? Take care, Claire. Yes, we're all learning a lot right now. Lindajoy

Hi, Northerndarlene, Do you know of anything that triggers these feelings, like eating, smells, activity? Or, do they just come on, out of the blue? Is the heat situated in one spot mainly, like it originates there, such as in the gut? Sorry to ask so many questions. I get a couple of different "heat" episodes that lead to symptoms, one from a terrible systemic GI reflux I have, whereby none of my GI valves shut properly, leaving backwash to head back where it's not supposed to go, all of the time. The other is either adrenaline in nature, I think. Anyway, if you could provide a bit more detail, I'd appreciate it. Take care, and I'm so sorry you're having these episodes. I'm sure they are very scary. You hang in there! Lindajoy

Hey, Futurehope, just a chuckle here: Your "title" is, "For Those Who are Interested." I guess a lot of us are! Glad we're talking about this. Very timely and helpful for everyone. Lindajoy

Maiysa, I so understand your need to move past the "stuff" and get on with living, even if it is with a disease. I'm so sorry you had such a time getting your MRI. You hang in there. Naomi, yes, he ruled out CFS / ME based on my tests. He wrote that my HHV-6 and pneumoniae antibody levels were "unimpressive," I guess for this condition, and that all of my other tests were absolutely normal--no EBV, CMV, lyme and others that he tested for. He said that he thinks my problem has more to do with a condition involving my high level of eosinophils, so he thinks I should pursue that, so I'm off to test for mast cell again. I've read that, in some people, high eos. in the esophagus, like what I have, can be associated with a mast cell problem. The one thing I have learned through all these years of illness and research, is that docs and researchers can never, or should never, fully plant their feet in concrete when it comes to medical conditions because, even with learned illnesses, there are always exceptions. So, to say that they have done that with regard to an illness they're just learning about--MCAS--is a bit premature. Yes, they have their theories, but they're just writing the textbook now on this condition, so do we really know, for sure, what level of bp is truly associated with MCAS? If you look up Addison's disease, which I had diagnosed in 2009, all textbooks will relay that the "typical" blood pressure of one with Addison's is low, especially when in crisis. Yes, mine went low when I went into crisis in 2009 and nearly died, but I've had other bouts of adrenal crisis wherein I developed a high bp. There is a woman on my support group who goes high, as well as two others we know of. Are we the norm? No, but we still have this disease, whether docs like it or not. I started Allegra, Singulair and Pepcid a year and a half ago. Since that time, I've improved, albeit I still have the severe eating reactions, but my other symptoms have improved. I've tried stopping the Allegra because it's a bit expensive, and my nasal congestion, fatigue, itching--esp. the itching--are so much worse, even after just one day. I would be doubled over every day with stomach pain without my pepcid. On Atarax, a med so many times more potent than Benadryl, I felt awesome! My itching was totally gone. I could eat. It was amazing. But, as it's also an anti-depressant and I can't seem to tolerate those, I had to go off of it. Take care, everyone. Lindajoy

I guess if it works, don't question the why, just enjoy it! I'm glad it's helping you. You take care now. And, Charmed Linz, you hang in there and let us know what you find out. Lindajoy

Hi, Claire. Not to add to your overwhelmed feelings, but have you had carcinoid and pheochromocytoma ruled out yet? Those two conditions seem to be two in the running when one has the symptoms you have (which so many of us here do), and should be ruled out. I'm sure you have, bless your heart, with all that you've been through. Oh, my goodness, can I relate to your statement "I just am getting burnt out." Used to be, when I was feeling close to death, I'd drive to the hospital ER. Nowadays, I say to myself, "Yeah, well, whatever. It'll pass. It always does, and there's nothing they'll do for me anyways." I still get hospitalized a lot when I'm severely dehydrated and malnourished, but I don't run to the ER at all compared to what I did. And, I can relate when you say, "I am very overwhelmed on what to pursue." Amen to that! I recently drove to another state (well, rode along while my husband drove) to see an infectious disease doctor, to be checked for ME caused by viruses. I just got my follow-up letter from him today, and we've ruled out CFS/ME caused by any viruses. I've had carcinoid, pheo, porphyria, and many other diseases ruled out. The one thing, though, that keeps coming back, in most doc's minds, is Mast Cell. It's what was suspicioned when I first got sick, and it's what I'm undergoing more tests for now. But, I can so relate when you say you feel overwhelmed because the symptoms match a lot of conditions. I've been 7 years at this (please don't think you may be in the same hole as me) and have had to have a lot of conditions ruled out, only to come back to mast cell, but I guess we do what we have to do. It's really hard sometimes. I know that and my heart aches for you and everyone here who is sick and in need of help. I, like you, Claire, am a walking chalk board, I'm so dermagraphic. Fun at parties and school when I was a kid, not so fun now. I get hives, flushing, GI problems (severe), have high IgE so lots of true allergies, throat swells, migraines, dizziness--well, I actually go into anaphylaxis a lot. I live on Allegra, Pepcid and Singulair every day, plus my corticosteroid Hydrocortisone three times a day, and Claritin as needed. I show a tryptase that tripled during my last post-reaction testing (but it was still within normal range, so no one thought much of it), high histamine every day, elevated prostaglandin post-reaction, high eosinophils, and I have 56 or so of the 60 or so symptoms for mast cell disorder listed on the Foundation's site. Yet, I too have had a hard time getting a diagnosis. This mast cell stuff is frustrating, but I'm so glad we have places to go, tests to take, docs who are really working at learning it, and each other so we can possibly get the help we so desperately want so sweet, suffering people like you don't have to feel crappy all the time. You take care and hang in there. And, Issie, I agree with you. They're not talking with the right people all the time! Lindajoy

Hi, Dana. Just curious. I have Addison's and am being treated with Hydrocortisone. Since I've been on the steroids, my eos. numbers are really good, always normal, but a very good normal, if you know what I mean. Not borderline or high, so as to cause question. Anyway, I didn't know that high eos. can come with adrenal issues. Are you on a corticosteroid for your AI? Do you think that the steroids are lowering your eos. or getting the AI under control is lowering them? I know, probably chicken and egg, but this is interesting to me. Take care everyone. Linda

There's also a paper out by Dr. Diana Driscoll whereby she connects EDS, POTS and mast cell disease. It's interesting. In her paper, though, she states that the mast cell problem is secondary to the POTS, wherein other docs are suspecting that the POTS is secondary to the mast cell problem. Chicken and egg, yet again. But, a connection all the same Again, just interesting stuff to consider. Lindajoy

I was wondering about this, as well, because Dr. Grubb, our nation's leader in POTS, has video interview out where he talks about the connection between Hyperadrenergic POTS and Mast cell disease. I think you can find it on YouTube. Also, Vanderbilt did that study--I believe under Dr. Raj--connecting POTS and mast cells in a number of the population. It just makes sense to me that someone who walks around in a state of albeit mild anaphylaxis due to continual mast cell activation would show POTS symptoms. Most people with both disorders share: low bp, tachycardia, arrhythmia, headache, neuropathy, GI problems, etc. I'm sure someone in anaphylaxis would fail a tilt table test due to low bp and probably dehydration. Maybe I'm off my rocker here--wouldn't be the first time and won't be the last--but I can see where those suffering with mast cell would also have what looks like POTS, if not is actual underlying autonomic dysfunction. Just my two cents. Lindajoy

My experience at Mayo in Rochester was unproductive. Please pm me if you would want more details. Good luck. Lindajoy

Hi, Charmed Linz. High eosinophil counts were the first thing we noticed in me when I first got sick. Mine were only 16, still high, but when compared to your 47, wow. I also have extremely high IgE (1650+ on a scale of 0-150). I'm not a doctor or anything, but I studied eosinophils quite a bit over the years in trying to find out what's wrong with me and using the few positive lab results I had, and continually high eosinophils is not something docs should just shrug off. They're high for a reason. I have allergies--severe allergies--and my eosinophils are not as high as yours. That said, yours aren't high enough for the condition "eosinophilia," I don't think. But, still, there's something going on. Have you contacted the CURED Foundation? They're a group with info. on eosinophil disorders. They could guide you to some good research docs and answer your questions. Please keep us posted on what you find. Take care. Lindajoy

Thanks, you all. Look forward to seeing you on FaceBook. Yes, I've been on the FB Dysautonomia site. Lots of nice people and information, but honestly, DINET is so much easier for me to use, and I know the people there, so.... You all take care and again, I look forward to keeping in touch with you. Lindajoy

Hi, Corina. I can speak to the red issue as a child. When I was around 3 or 4, I started to turn beet red, usually all over my body, after eating. Sometimes, I would get hives with this, sometimes I would vomit or have an asthma attack, but I remember always turning red. I got worse and worse until I had to be hospitalized when I was five years old, twice, for what docs thought was pneumonia. The doctors found that I had asthma brought on by severe food allergies. It was the food allergies that was causing me to turn red, too. Flushing, they call it, and it can be all over the body, not just on the face. I was tested and found to be allergic to eggs and all poultry. Milk was not a good idea for me at the time, nor was chocolate, so I had to stay away from them too, for awhile. I was treated for my allergies with shots (I had environmental as well), stayed away from the foods I was allergic to, and took antihistamines every day. So, you're asking if the redness is allergy related? I would say, given that your son also experiences fainting, allergies and asthma, that yes, more than likely he was having some type of histamine reaction. It's strange, though, that it would happen only when you would try new foods on him? Usually, with food allergies and other allergies, you can get by the first time you come into contact with the allergen. Your body hasn't had need to create an antibody against that allergen until exposure. That's a true IgE mediated reaction, when your body has the antibody to the allergen (I hope I'm not insulting what you do know about allergy). Now, there is another reaction called an anaphylactoid reaction that is not IgE mediated. In other words, your body can react to it the first time you come into contact with the item since an antibody is not necessary in order to have a reaction. Does that make sense? The symptoms of allergy / anaphylaxis and anaphylactoid reactions are identical. That's what's confusing to so many people. "I react to cherries, but I don't show that I'm allergic to them on testing." Well, that's because you aren't IgE mediated allergic to them (that's what allergy testing tests for, IgE mediated allergies), but you can have an intolerance to them that can create an anaphylactoid reaction (what is not tested for). Any way you look at it, you need to avoid that allergen. So, now that I've thoroughly confused you... Yes, your son could have had an anaphylactoid type reaction even the first time out on eating these foods. Was he able to then tolerate them later? Sometimes we can eat things that we previously couldn't due to the body changing or us building up a tolerance to the food, such as what happens when we're given allergy shots. We're given little bits of what we're allergic to in those shots, in an effort to build up a tolerance. "Hey, if I'm exposed to this all the time, I'll just get used to it and see that it's not a threat to me," says the body in theory of why shots are used in allergy. I'm sorry to take up so much space, and I hope I haven't insulted what you do know about allergy, like I said above. If you already know a lot of this, I apologize. But, yes, I turned red all over, too, and it was found to be from allergies, esp. noticeable after eating. I hope your son is doing well now. Lindajoy

Hi, everyone. I just wanted to let you know that I have a FaceBook page and would love to have you visit it to see some of the pictures I put on there, mostly of my grandchildren (I'm so proud of myself. Took me hours to learn how to put pics on, and I have a few doubles (even had a triple of one at one point! I'm so not computer savvy)). Just look for Linda Burgess Parsons. I'm not really all that sure about FaceBook rules. I think you might have to be a "Friend" to see my pictures. If so, don't hesitate to send me a friend request. Like I said, I'm new to this and am just learning my way around, but I'm enjoying it quite a bit. For so long, I've been pretty home bound, so having this avenue to actually talk with people in my community and family is pretty nice. I feel like a part of life again. I'm still hesitant to tell old friends how sick I am. It will come out in bits, I guess. I am thinking of putting something on there about Dysautonomia and Addison's, maybe even mast cell disease. It's a work in progress, I guess. You all take care and I hope I'm able to share some of my pics with you all. I have a month old grandson and a nearly two year old granddaughter. They're both adorable, but of course Grandma would think that, huh? Blessings, Lindajoy

If you all want to smile today, go to YouTube and look up Shanthi, at the Smithsonian National Zoo. She is a 36 year old Asian elephant, I believe, who actually plays the harmonica. Now, she doesn't play Yankee Doodle, but she makes some very pretty music. It's a really cute video to watch. I hope this makes you smile today. Lindajoy

I am with you, Futurehope. I have been extremely ill for seven long years, as you all know here. I thank God all the time for this site, and for the suggestions that everyone has brought to me in order to try and help me get better. Just talking with all of you has opened my eyes to many conditions that I could have had and led me to be tested to rule them out. That's all we're trying to do here, is get better ourselves while helping others, as well. If it wasn't for the support groups I've joined over the years and nudgings from the people on them, I would not have been diagnosed with my sphincter of oddi dysfunction and gotten help for it. I would not know a thing about POTS! And, even though mast cell disease has been ruled out for me by several top mast cell doctors, I still get, from everyone on every support site I'm on, that I fit the mast cell profile to a tee (I really do), even to those with mast cell disease themselves. Thus, I'm not ruling it out as my diagnosis. I'm pursuing additional testing. Thanks to all of you. By the way, I contacted Dr. Afrin yesterday. He wrote me right back last evening! I gave him my symptom story along with labs. He was not ruling out mast cell in me at all, based on all I said. He said he would be glad to see me in his office (what has been the wait time to see him for all of you? He said it might be awhile), or he would gladly aid my own pcp in doing the testing, then help with treatment suggestions. Wow. You don't get that with just anyone! He said he was hesitant to have these tests done anywhere else as they may not get handled correctly, so what do you all think? Should I try my pcp here or set out to see Dr. Afrin? Stay strong, everyone. And, again, I'm glad you all are here, sharing your thoughts, experiences, knowledge and suggestions. Without all of you, I truly would feel more alone and lost than I do. Lindajoy

Well, it was 80 degrees today, humid, and within minutes, I had the uncomfortable feeling, itchy sweating, etc. I am so disappointed. I had to come inside while my husband worked our gardens. I am not looking forward to another summer this way. If anyone knows what this is, please let us know. Thank you. Linda

Yes, I have interstitial cystitis. Don't know what is causing it, but I suffer with bladder pain and pressure, urgency (many times can't make it to the bathroom), frequency, back pain. I've had it diagnosed, but as to a cause, like with everything else I have, no one knows. I have noticed that dyes in meds bothers my bladder, certain meds period do, and other things. Other times, I just plain have symptoms without my knowing what I did to trigger them. Hey, Maiysa, yes, I've read many articles and postings about the connection between mast cell problems and IC. I've heard a connection between eosinophil diseases and IC exists, as well. I think even those with Lupus can have it, as can people with other autoimmune problems. Biotoxin illness can cause it, as well. Geeze, I'm a big help, aren't I. Anyway, I feel your pain and know what you're dealing with, and I am so sorry. Take care. Lindajoy

Hey, Futurehope, I didn't mean to take over your post. I'm sorry. Please keep us updated on what you find out. So many of us here have mast cell disease suspicions and could really benefit from what you find out. Again, sorry. Lindajoy

Hi, everyone. Okay. I have a couple of questions and concerns on this very subject and hope you all can help. Oh, and my two cents? I'm glad there are specialists out there who are receptive to emails questions from strangers about health issues, so people who can't get out very readily (like me) or who haven't a clue which direction to go in (along with their own pcp's) can find new hope and direction. I've emailed many, many doctors over the years with questions in their areas of expertise, and have been very glad when they're offered guidance, being in the situation I am. Not one has ever given me a diagnosis over the phone or in an email. Anyway, I have some questions. I had an episode induced at OSU a couple of months ago. Afterwards, tests were run. Now, beforehand, my tryptase was 1.1. After the episode, it rose to 2.5, then a few hours later, dropped a bit to 2.4. The next day, it was at 1.1 again. They used a shot of salumedrol to calm my symptoms. According to mast cell "rules," I'm still normal, but here you said that anything above the 1 is suspect. Could I be showing a mast cell issue, even with this bit of elevation? And, could I get Dr. Afrin's email? I'd like to ask him about this. I'm concerned because I have no diagnosis, I'm on a med that de-granulates mast cells and I've been really GI sick on it, I'm sicking here right now with a very red, burny face, and I don't think mast cell has been ruled out adequately now, given what I think I'm hearing here. Thanks, Linda

Hi, everyone. Those of you who tried Clonidine, did you develop severe GI problems? At first, I noticed some pretty good stomach and gut muscle spasms when I'd eat. Now, I feel like I have pancreatitis (I suffer with chronic), but I have no diarrhea, nausea, fever, or glucose problems, so I think that's out. Also, I've read that clonidine is actually used to treat pancreatitis (the patch, like what I'm on). I have gut pain and burning, pain in my lower back, and I just feel burny in those areas. Every time I eat, I feel miserable GI-wise. Anyone else on this? If you had this problem, were you able to work through it? Did it eventually subside? What did you take for it? Thanks. Lindajoy

Wow, Liz. Your treatment with natural supplements sounds a whole lot healthier and it worked. I may be facing treatment for viruses, too, so this is interesting to me. Naomi, if you decide to stay on the medication, I've heard that you feel sick at first, but then, around week three or four, you begin to feel better. Dr. Montoya, at Stanford, said this, I believe. He said he expects it in his patients. Hope this helps a bit. Lindajoy

I have this, too. I have found no rhyme or reason for when it happens. It feels like someone is pressing a continuously vibrating phone to my lower legs. Is that how yours feel, too? I sometimes also get this feeling in my gut and chest. Do you? If anyone knows what this is, that would great to know. I've heard this called a "body buzz." Lindajoy