For Those Interested - I Saw Dr. Afrin And Have A Possible Mcas Diagnosis

[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

[LindaJoy]

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

[issie]

thanks Issie. My main point was about self-diagnosis and about the fact that nearly all the docs who research POTS suggest MCA is not that common in POTS.

I guess maybe the researchers aren't asking the right people. LOL I bet a bunch of us here would beg to differ. Of course, if you did a ratio to ratio of us here with MCAS and those without it the numbers would be low. But, still the numbers are there.

Issie

[Maiysa]

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

Hi Linda Joy, I'm not sure how old the paper was that Dr. Driscoll wrote, but I see in her new book The Driscoll Theory Part 2 she says that POTS is a symptom of Mast Cell and she also added EDS. Now her theory is that Mast Cell might have the capability from birth to actually change collagen fibers, hence EDS 3. This is all very interesting isn't it. Lots of new information for us all.. So I was constantly asking the chicken or the egg, but from what I'm reading it sounds like the mast cell issue is actually coming first. She also adds hypothesis from other doctors. Some very interesting research.

[Clairefmartin]

Wow! What an infromative thread, thank you all for posting! As some of you know, I have pursued the MCAS dx and gave up after 2 tryptase reults of 4.3 and 4.6 and a 24 hour urine histamine of 29 (UG/24) and (16 UG/L). My IgE levels are always elevated. My docs told me no way. I have a feeling though that there is something MCA going on - all my docs are amazed at my extreme dermatographism, I flush when I stand, I get hives, random food and chemical reactions that make my throat swell, sometimes extreme BP or dixxiness reactions to food, and a few others. Massive GERD, I live on Zantac, and it calms my flushing as well. When I had my recent TTT, my face went numb. Hot, sweaty, and numb, it was terrible, and I was red all over.

I recently read about exciting new research linking autoimmune disorders and MCAS/Masto, I'll try and find the link. I mention it becaise I have Raynauds, extreme gluten sensistivity, and all the women in my family have AI issues, so we have been doing extensive testing for suspected Sjogrens or AAG, or any other AI disease I may have. I was told I probably have Autonomic Neuropathy, and am being biopsied everywhere for that, SFN, and another rare AI disease (stomach biopsy - forgetting the name). THere is so much cross over in symptoms, I'm very overwhelmed and confused as to what to pursue. I have a gut feeling that I have MCAS, I just am getting burnt out.

You guys mentioned the standards had changed - does anyone have a link to the new ones? Do you all think I should keep pushing? I'm going on a year and a half of bed bound yuckiness and collapsing after 2 minutes max, and I really want some answers.

I randomly asked my GP for an Epstien Barr test and a Lyme test, and he called the next day because I came back very high (>8) for IgG and EBNA, possibly suggesting its chronic, and he was concerned, so now I have to see ANOTHER doctor - and infectious disease doc.

I also go for a GTT test and a Liver U/S because they think I have Metabolic Syndrome. I am keeping my appointmnet at Vandy for teh end of July, I was switched so I see Bagiano (sp?), so thats my last ditch effort to get help.

I'm getting burnt out, and space brained - sorry to ramble, but just wanted any input if you feel so inclined And please ignore the type-o's, I'm typing in bed around a baby.

Thanks all!!!

Claire

[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

[DoozlyGirl]

Claire,

I will be seeing Dr Afrin in 11 days, and have a tryptase of 2.5, and skin biopsy confirming blood cells in my skin. I have not had any other mast cell tests. My symptoms and improvement with antihistamines (and mast cell stabilizers in the past) and this testing got me the clinical diagnosis and I hope Dr Afrin can nail down the biochemical diagnosis. I have been on H1 and H2 since January and had to add singulair due to chest congestion during my reactions. As I posted earlier in this thread, many of my crappy symptoms have gone away with the H1 and H2, and lots of trial and error to pinpoint what makes me trigger. For me, food drug and cosmetic dyes were my BIGGIE. I got rid of yellow #5 and red #40 and noticed a HUGE difference. I also react minimally to Blue #1. Right now, my big issue is chronic anaphylaxis. I just found the sweetspot in my meds and eliminating triggers and haven't had symptoms AT ALL for 2 days.

I am sorry you have burned out on chasing this diagnosis. Just as others have done for me, I really do think it is well worth your time to pursue.

One of the best and easiest things to try is add a decent H1 ( claritin [generic=loratidine] or zyrtec [generic = ceterizine). Take one dose of H1 in the morning with a H2 (like your zantac or pepcid [generic = famotidine]) and again at night. If you can tolerate these meds, then try to figure out what triggers it and eliminate those. Try the low histamine diet as a basis of figuring out if foods are an issues. If you notice a improvement in your severity, then its a pretty good clue to go full guns and learn everything you can about mast cells.

For any one out there with mast cell suspicions, try this same plan and see if it makes any difference to you. Make sure your not reacting to any of your meds. I was!! And feel so much better now that I am on dye free meds.

Best wishes and good health, all!

Lyn

[HopeSprings]

Doozly - thank you so much for the detailed explanation. I read it three times and may have to read it another three times! To clarify, I don't have the breathing problem anymore. POTS started that way for me acutely - but this symptom settled down the first year. I've had some of the testing done that was mentioned and it all came back normal. Although who knows if it was done properly. Gonna keep doing my research and see if MCAS might make sense for me.

Linda - CFS/ME was ruled out?? What did Dr. Lerner say about the HHV6? Did he test for EBV and the others?

[Maiysa]

Claire and LInda, I just read your post and it made me laugh because I just said the same thing to my husband, done chasing this crap. IT gets really old with these doctors. Anyhow, just got back from an MRI they thought my brain was bleeding. I can guarantee it's not. Just part of this disorder, won't know for sure till Monday. But I'm not worried. But my neck and head hurt. But it was a 3 hour ordeal and the insurance and the referral and the authorization got messed up. Anyhow it was chaos and I just started crying because I'm so over this. So over the red tape. Anyhow, it worked out and I got the MRI, but I swear I want to move on with my life and just deal with this disorder. It's consuming my life. So after I get answers I just want to move onto acceptance. I know we all do.

Anyhow, what I was going to say Claire before my rant, is that I think 4 tryptase is usually positive. What I did was go on the mast cell forum and posted on there that I looking for a doctor in the southwest. Luckily someone came on a few weeks later telling me that there is.....hallelujah...a doctor who is in the southwest area who is familiar with mast cell. What a lucky strike for me. And he ended up being on the same insurance and not very far away. IT was a miracle. But I will list the forum for you Claire. Good luck. Let me know if you have any other questions.

Maiysa

[ramakentesh]

And if the MCAS is secondary then that leaves us with a lot of questions. I can only go on what I have read and what I am told by the doctors. they say its rare and that when it occurs its in the hyperadrenergic form but with MCAS episodes that cause extreme low blood pressure.

I guess the evidence would be treatment success with H1 or H2 blockers or mast cell stabilisation. Would many here claim improvement?

[kluesyk]

Yes. Without Zyrtec, Benadryl and Pepcid I get much worse.

I have been taking Benadryl since 1991 and zyrtec since my fast onset unexplained appendicitis in 2004. I have unexplained angiodema like swellings since 1991 and the H1 and H2 help keep it under control. I had thyroid failure in 2006, adrenal failure in 2007 and a H-POTS diagnosis at Vanderbilt in 2011. This year my immune system has tanked with very low CD4 and CD8's. I had 20 years ago a three year episode of autoimmune mixed connective tissue disease...but now ANA is negative and sed rate is normal.

A celestone/kenalong steriod shot in the hip will dramatically improve my health for two weeks....but have bad side effects long term.

.

I also have hyperextensive joints and have a strong family history of death by aortic dissection and aneurisms. I also had a grandmother and aunt that had swellings and unexplained pain all their lives.

I DO think their has to be a core problem for SO MANY failures to happen with me.

I recently reacted VERY BADLY to iodine CT contrast which I found out later is a known mast cell degranulator. I also have strange reactions to medications that most people can take.

I see Dr Afrin later this month. It is a LONG trip for me so I am hoping he can help me. at this point I am very discouraged....most Drs I see only do massive testing and then don't help me....they say I am too complicated.....gee that sure doesn't help me.

[futurehope]

And if the MCAS is secondary then that leaves us with a lot of questions. I can only go on what I have read and what I am told by the doctors. they say its rare and that when it occurs its in the hyperadrenergic form but with MCAS episodes that cause extreme low blood pressure.

I guess the evidence would be treatment success with H1 or H2 blockers or mast cell stabilisation. Would many here claim improvement?

I can only speak for myself. I need to be on my H1 and H2 blockers and singulair or I develop worse symptoms. The ingestion of the blockers does not "fix" the underlying genetic defect. It allows our body's to be calmed down from the chemicals released from degranulating mast cells.

I have so far been able to do Dr. Levine's exercise program, so I cannot complain.

I have a lot more researching to do to figure out my triggers, and I am not overly motivated:I need a break. But, for starters, I eat only organic food, if possible, and I stay away from more complicated foods that were manufactured with many different ingredients. Eating out is difficult for me as I can always expect to start having problems. I do not know my triggers, and who knows what they put in the food?

I drink water only. I do not ingest soda pop as the bubbles cause problems for me. Tea, coffee and alcohol are out.

P.S. It is true that many doctors do not understand MCAS or even know about it. They may know about full-blown mastocytosis, as the symptom of anaphylaxis cannot be ignored. So, just because researchers are not aware, this fact did not stop me from my pursuit. After all, Dr. Afrin and a few others are currently adding to the knowledge in this area. Bless their hearts.

[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

[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

[Clairefmartin]

Thank you for the feedback. I will have to check up on the new standards for abnormal tryptase. I am being biopsied for SFN, I wonder if they can check for mast cells while they are at it? And I just got my Lyme tests back - they are negative thank goodness. I think I'm going to push for the AI stuff and the MCAS stuff. They just make the most sense with my history and smyptoms.

I live on Zantac, but have not tried an H1 - when I took them in the past they made me VERY tachy and felt horrible. Its been years. I use breath right strips instead I'm a bit scared to try - does anyone have suggestions for non- tachy inducing H1's?

I always figured my facial feelings/symotoms were vascular, not MCAS - but my right side of my face randomly swells in reaction to stuff, and my nuero-endo doc said my #2 facial nerve is damaged. I have been lucky to not have any flares in the last few weeks, so I wonder if it is all really just typical allergies? Very confusing.

Anyways, thanks all, and I am keeping tabs on this thread because it is so informative!

[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

[DoozlyGirl]

thanks Issie. My main point was about self-diagnosis and about the fact that nearly all the docs who research POTS suggest MCA is not that common in POTS.

For those of you intersted in learning more about mast cell disorders, I'd like to share some things I've learned.

The concept of mast cell activation has been around in the publications for decades, but it was clinically associated with local degranulation, as in asthma, interstitial cystitis or systemic degranulation due to true IgE allergy (ie peanut allergies, bee stings, penicillin) OR mastocytosis, a RARE, and little known disorder of the mast cells, which includes both proliferation (over abundance) and excessive mast cell activation. It IS common knowledge that systemic mast cell activation leads to anaphylaxis . Look up EMS protocols and ER physicians journals and surgery/anesthesia journals, if you'd like. The hitch here is that previously, conventional medical wisdom believed that excessive mast cells or IgE triggered mast cells were responsible for the mast cell activation causing anaphylaxis and didn't account for defective or overly trigger happy mast cells as a link to systemic mast cell activation.

Mastocytosis experts had established very strict WHO guidelines and many people showed evidence of mast cell activation but just didn't meet the firm criteria (excessive number of mast cells) for mastocytosis diagnosis. So were left out in the cold and dark. The lucky ones got the diagnosis of idiopathic anaphylaxis, told to take antihistamines, go on a low histamine diet and carry an EPI pen. While a small to moderate percent of these people could figure out their triggers through intensive allergy testing, the vast majority (60-77 percent or more) was told they's likely never figure out why they anaphylax. Dr Cem Akin, from Harvard, the leading US authority on mastocytosis, began to study these IA patients and he was one of the first to break ranks and suspect that there could be an abnormality in the mast cells that causes degranulation. He spoke of mast cell activation tied to a trigger happy defect at the 2009 Annual Mastoytosis Society conference.

This is a very political battle, and the researchers who origianly established the WHO criteria are holding onto their life's work and some are not budging. But as the publications and data are reviewed, many researchers are stepping forward the this concept of mast cell activation without excessive mast cell or IgE involvement grow, the movement of mast cell activation syndrome (MCAS) moves forward. An international panal had now defined some criteria for mast cell activation and several of us on this site are running with it, likely because we have easily identifiable symptoms. I flush so much that many docs just thought I was sunburned, but I live in Wisconsin, have red hair and fair skin, so finally that assumption is being broken down. My pheo and cardinoid tests were negative, so they moved on.

I attended a talk on Wednesday given by Drs Thomas and Gisella Chelminsky, formerly of Case Western, and now at the Medical College of Wisconsin. I posed the question (sent it ahed of time in writing) and asked if he had any experience with mast cell activation disorders being tied to autonmic dysfunction. He said classicl mastocytosis is so rare, that no, he has not. He went on to describe proliferation, so I immediately knew he was not familiar with mast cell activation syndrome. His wife, a pediatric GI, said she will routinely biopsy for it, but rarely finds it. After reading about Dr Afrin's 90% success rate in finding mast cells in the GI with the addition of non-standard but readily available stains, I highly suspect Dr G Chelminsky would likely see more cases by using the same stains that Dr Afrin's patholgists use.

Which brings up my next point, many leading researchers have publicly stated that better more senstivie testing is needed to capture the metabolites that are released after a degranulation episode. Currently, mastocytosis is deignosed after a hugh tryptase or bone marrow biopsy finds accumulation of mast cells, both pointing to excessive numbers of most cells, NOT how they function. Current testing has to capture the blood or urine within an hour or two after the degranulatin began. Very difficult to figure out how to capute when my orthostatic hypotension is so bad, I can't get out of bed during an episode, and many times I am not awake, as i lose consciousness for hours. I don't have orthostatic issues without flushing. Kind of telling to me. Stop the flushing, and I feel great!! I am so close to feeling normal again, I can almost taste my freedom from all this.

Does the fact that autonomic neurologists aren't up on mast cells mean that mast cells may not be a leading cause of my autonomic neuropathy? **** NO! To me, it just means that science hasn't caught up yet. Just as my my other physicians don't know about autonomic dysfunction, I can't assume these neurologists would be up on recent data on mast cell disorders. Lastly, the WHO would NOT have moved around it's claffication of proliferative disorders, added mastocytosis to that proliferation bucket and then drafted a guideline for mast cell activation syndrome if there wasn't enough proof to justify it's existance. Regarding the link to POTS, Vandy has an old article out there on HPOTS and mast cells, and I bet once more POTS patients start to to chase down a mast cell diagnosis, we'll start to see more autonomic neurologists buying into this as a possible explanation why SOME of us have autonaomic neuropathy, orthostatic hypotension, orthostatic hypertension, or POTS.

I didn't think that mast cells were my issue at first, but once I got on anihistamines, I couldn't deny it. I wish you all the best in finding the cause of your own symtoms.

Lyn

[futurehope]

Doozlygirl,

You sound like a physician. I guess my long wait to pursue this diagnosis was necessary, as physicians knew even less back in 2004 when I first started thinking about it. I even convinced myself to forget about looking into a mast cell disorder, figuring, there is no way.

Anyhow, proliferation is different than "mast cells behaving badly". I too must stay on my daily H1 H2 blockers, along with a PPI and Singulair. I am not cured as I still have not identified my triggers. But I am much better than I was back in 2001 when I first became very disabled. I now have a bit of a life, though I am not as improved as I want to be.

I'll let you all know what I find out about myself. Keep on keepin' on everyone. There are answers out there, maybe not a cure, but answers.

I posted this thread in case someone was interested. I did not want to tell people what to do, but I figured there would be someone who would be able to relate and who might be motivated to pursue MCAS if they knew that I pursued it and they knew my experiences.

My suggestion would be to go see the experts, the ones doing the research, and who are familiar with the latest findings. They are the most interested, and have a vested interest in helping you.

Folks, do not give up. I always perked up a bit when my various POTS savvy doctors would say, "you know how you POTS people are so sensitive to everything..." Oh really. We're all really sensitive to everything and to any changes. Well, I finally asked myself, "WHY?" There must be a reason.

[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

[DoozlyGirl]

futurehope,

Nope, I'm a patient. I did work in healthcare for 20 years before becoming too ill to get out of bed. I wrote health system policy for the last 10 years and had to do tons of research, so I guess I'm just comfotable in that mode.

[issie]

Lyn,

Excellent post - thanks for all the information. I agree- this thread will go in my save file.

Issie

Oh, as for the illness that mast cells affect the heart -----they think I have this -----it's called Kounis Syndrome (rather expensive ER visit for me). It's not fun - when it hits your heart. Lots of antihistamines, nitroglycerin and IV's are the treatment.

[LindaJoy]

Thank you, Issie. Yes, Kounis Syndrome. I was evaluated for it, well, sort of, in January. That's when they did the testing at OSU for mast cell disease and some of my markers came back questionable. At the time, I was having heart pain, and the folks at TMS support site told me to be careful and mentioned Kounis. I talked with my heart doctor about it, and he became concerned enough to send me to OSU. They said my heart was fine, but they ran the mast cell testing after an episode.

I have a friend at the mast cell site--she's the president of the mastocytosis foundation--who recently had a heart issue due to mast cells in her heart. Yes, it's frightening, but I think it's not very common. I won't use the word "rare." I'm finding that "rare" causes a lot of frustration and confusion, and simply isn't true in most cases!

Take care, all.

Lindajoy

[Clairefmartin]

I have been seraching for 2 days - I found Dr. Afrin's page, but can't find an email. Can someone please PM it to me? I also can;t find the new diagnostic criteria for MCAS, and I checked every site I could find, and even the PubMed literature. If someone has a link, that would be awesome. My allergist/immunologist os open to it and reads what I bring him, so I'd love to bring him more info.

Thanks so much!!!

Claire

[Maiysa]

Lyn, Oh my!! That is a lot of great information. Good for you!!!!

Thanks Naomi for the support. I think I had a 48 hour melt down. The pain has been incredible. And then I got turned down for Soc Sec for the 4th time all at the same time, that didn't help. OH well. I guess having chronic valley fever, thyroid cancer, toxic thyroid, autonomic neuropathy with orthostatic intolerance, mast cell and now hypermobility, constant migraines isn't enough diseases in 5 years that would cause one to not have to work. Wow. I know if that judge had just one of these he would not go to work!!!!!!!!!! Okay, sorry to vent.

Anyhow. Claire, I'm so sorry you are going through this. There was a time when I couldn't stand up for any length of time or even sit up to barely eat without passing out. I feel for you!!!! Hang in there. There is hope that that stage will pass. I will search for the MCAS criteria. I just had it the other day. Sorry to make you wait so long.

Maiysa

PS also there was a conference just not long ago where they were trying to make the criteria official. I think it was held in Texas or something. Hope I'm not getting it confused with ehler's danlos conference. But will check.

[Clairefmartin]

Thanks for checking on that for me Maiysa!

I had a random MCAS question - can you flush without showing severe flushing? I have many episodes where it actually feel like I am burning from the inside out on my face, and usually ears, but I look in the mirror and may be a bit pink, but not the crazy red I see many get in pictures of MCAS. This may be hormonal I'm thinking, and not MCAS? SO confusing. Thanks.