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

[futurehope]

Various tests were done and I will know the results when I see Dr. Afrin again in August. He suspects I have Mast Cell Activation Disorder, but he will not officially give me the diagnosis until he sees test results.

I'm suspecting from reading this forum and from reading the Mast Cell forum that my POTS is caused by the MCAS. As a matter of fact, many of my varied ailments from a very young age, with no explanation, have probably been caused by this disorder. Apparently, there is a genetic component to this disorder. I know very little at this point since I am just at the beginning of this journey.

It has been a long road, and its been time consuming. I had hit many dead ends, and visited many unhelpful doctors. It has required tenacity on my part, but I do believe I am finally beginning to put my puzzle pieces together. Praise God for the internet and for these forums.

[sue1234]

If there was a "like" button, I would have pressed it!! Do you start on any meds before you see him again?

[futurehope]

There is a "like" button. I just noticed it. Do you have MCAS?

I am currently taking Dexilant - a PPI

Tagamet - H2 blocker (or is it H1?)

Hydroxyzine HCL - H1 blocker (or is it H2)

Xyzal - H1 (or is it H2) blocker similar to zyrtec

Singulair - leukotriene inhibiter

Nothing was changed. I'm fairly stable right now, enough to do Dr. Levine's POTS exercise program.

[sue1234]

I don't know. I've never gone down that avenue---yet. I'm still trying to work out my glucose issues, and then possibly an autoimmune angle, and then I'll go from there.

[LindaJoy]

Hey, Futurehope. Congrats if you have a diagnosis. That's exciting to learn your body.

May I ask, what testing did you undergo for this tentative diagnosis? I've undergone a lot of mast cell testing and have been told, time and again, that I don't have a mast cell problem. I'd like to make sure I've had all the appropriate testing, just to be sure.

Thanks and take care.

Lindajoy

[issie]

There is a "like" button. I just noticed it. Do you have MCAS?

I am currently taking Dexilant - a PPI

Tagamet - H2 blocker (or is it H1?)

Hydroxyzine HCL - H1 blocker (or is it H2)

Xyzal - H1 (or is it H2) blocker similar to zyrtec

Singulair - leukotriene inhibiter

Nothing was changed. I'm fairly stable right now, enough to do the POTS exercise program.

Recently on another forum and also here it was posted about DAO - something that we need when we have too much histamine. Tagament is one thing that lowers DAO - I switched over to Zantec and am doing well with it. There is a possiblity that we could have histamine intolerance and need more DAO and we don't want to lower this. There are other things that can lower it too. I found it interesting that something they recommend for mast cell issues - could be creating more issues for us. (Something new I've learned in the last month in regard to MCAS.) Hope you get your answer and then figure out what to do about it.

Glad you seem to be stablized and GREAT about being able to exercise. Since exercise can degranulate mast cells - you must be doing pretty well on your regimen.

Issie

[futurehope]

LindaJoy,

I asked for a copy of my test results. There were 17 vials of blood drawn. There is no way I could list them right now since I have no idea until I see some of them.

I also gave the doctor blocks and slides from my recent colonoscopy and EGD so that they could send them to the MUSC pathology lab and stain them specifically to look for mast cells.

My tryptase blood test taken locally by my POTS doctor was 4.0...in the normal range, but according to the mast cell forum, anything above 1.0 is suspect.

When multiple body systems are affected with "something", you have to dig deeper to find the underlying cause. Besides MCAS, I suppose some people on this forum could have Ehlers-Danlos or a Mitochondrial disorder, or endocrine issues, just three things that come to mind.

Issie, I had been on other meds like Zantac, Pepcid but I had some side effects I cannot remember right now. I appreciate you reminding me about the DAO. I read about it on the MC forum as well. Maybe I'll be switching. I vaguely remember the Pepcid giving me insomnia. I cannot remember what the Zantac did.

[Christy_D]

We go back for my son's follow up in two weeks to see Dr Afrin. He was very nice and extremely informative.

Christy

[Darlene]

future hope, i emailed Dr afrin, he suspects i have msac too. did he have your dr. run labs, and he wants the results sent to him.?if so, can u tell me the names of the tests u did?

i took rantidine but still have heart burn, i take prevacid now. what is rantidine suppose to help with anyway?

[futurehope]

future hope, i emailed Dr afrin, he suspects i have msac too. did he have your dr. run labs, and he wants the results sent to him.?if so, can u tell me the names of the tests u did?

i took rantidine but still have heart burn, i take prevacid now. what is rantidine suppose to help with anyway?

My POTS doctor, a neurologist, ran the tryptase and histamine tests which turned out negative according to the lab, though my tryptase of 4, according to the MC forum, is higher than the normal of "1". I've recently had biopsies done during an EGD and a colonoscopy which I took along for Dr. Afrin because he wanted his lab to run mast cell testing on them.

As for testing, Dr. Afrin does quite a bit and knows a lot more than any local doctor what tests to do and how to interpret your history in light of your test results. I trust him more than any of my other doctors when its comes to MCAS issues. He is a researcher who sees MC patients all day, so of course he knows more.

I emailed him my list of symptoms (including POTS) and asked him if he thought I should pursue an MCAS diagnosis, and he said "yes". So, I faxed him all my doctors' notes and labs from last year, plus any other items I had showing my dysfunction, and his secretary called and said she would set up an appointment.

As far as I'm concerned, this Dr. Afrin visit was a necessary step in unlocking my multiple disfunctions. If you are able, I would think about pursuing this diagnosis if you suspect it is possible.

[Darlene]

i was looking up high histamine releasing foods, and just about every food they listed are the foods that make me very nauseous. can you drink alcohol? the last time i tried to drink it, it caused me severe tachycardia.

[Darlene]

Issie, you talk about DOA. What is that? I was just reading Isoniazid blocks intestinal DOA. (But, I didn't understand what that meant)

I took Isiniazid for 7 months (was suppose to take for 9), dysautonomia symptoms (which I believe to be caused by MCAS), were severe. Dr. Afrin doesn't take paramount insurance (medicaid). Could Grubb write a referral and have my insurance pay for the visit? Not sure how that works. I see Grubb Thursday, I can ask him then.

[issie]

I just bumped another thread on Histamine Intolerance - the first article cited there talks about DAO. Hope that helps.

Issie

[ramakentesh]

Dr Afrin being the doctor that thinks everyone with POTS has MCAD? And he can diagnose over the internet? mmm interesting when ALL other researchers claim that MCA disorders are relatively rare.

Just because there are many aspects of POTS symptoms that cannot be explained by current etiological theories does not support the argument that mast cell disorder is the primary in all or even many patients.

[futurehope]

Dr Afrin being the doctor that thinks everyone with POTS has MCAD? And he can diagnose over the internet? mmm interesting when ALL other researchers claim that MCA disorders are relatively rare.

Just because there are many aspects of POTS symptoms that cannot be explained by current etiological theories does not support the argument that mast cell disorder is the primary in all or even many patients.

It would be unfair to say that Dr. Afrin thinks all POTS patients have MCAS or that MC disorder is the primary explanation in many patients. I have multiple body systems affected, and a very long history of unexplained symptoms. There are certain markers that Dr. Afrin looks for and if he sees them, he suspects MCAS. I have not been given the diagnosis yet, so it is premature for me to say I have it.

The person who posted about Dr. Afrin suggesting an MCAS work-up for them may have other symptoms you are not aware of. I had listed all my various infirmities that I've had for years for Dr. Afrin, some of which you are not aware of because I have not listed them on my signature on this forum. So, the picture you may have of me is not the total picture. Enough said.

If this doctor aids me and others to improve their health, and he is using his abilities to research, I commend him.

[Christy_D]

I don't believe Dr Afrin is diagnosing over the internet. It is great that he even responds to the questions he is being asked. Like futurehope, we emailed him my son's symptoms, current diagnosis and symptoms that don't fit POTS. We asked him if it was worth pursuing looking further into MCAS. In his response to us, he said whether it was MCAS or not it would be good to have it ruled in or out. In our email, he never said that MCAS was definitely an issue. He is an extremely thorough doctor, spending 1 hr 45 minutes with us and lots of tests.

[Darlene]

well said futurehope and christy.

futurehope, do you ever get this burning feeling inside your body, and frequent diarrhea and urination after an attack? I also feel weird when this is happening, like i might pass out.

[issie]

Just because there are many aspects of POTS symptoms that cannot be explained by current etiological theories does not support the argument that mast cell disorder is the primary in all or even many patients.

It doesn't NOT support it either. It's okay to be skeptical of things Rama - but, if even doctors are not sure about what some of our symptoms means or doesn't mean - we have to be open minded enough to consider the possiblities - even if the current research papers are not there to support it. That doesn't mean that in the future - they won't be there. There may be other explanations down the line - science is advancing. But, when people present with what seems to fit in with this idea and histamine blockers are of benefit - then you go with what seems to make sense at the time. If that changes later ---then you change with it. For now, people are getting help with this. Why? Maybe it's not completely understood yet. But, don't knock it -----if it helps.

Issie

[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

[brethor9]

Hi Linda

I was told by Dr. Afrin that normal tryptase does not mean you do not have MCAS there are alot of variables involved in a diagnosis. Also I was told by the president of the Mastocytosis Forum that any tryptase above 0 is abnormal.....mine was 4.2 but I have many other symptoms that match including severe forms of urticaria, dermographatism, flushing, etc.....tryptase is just a small piece of the puzzle. If you type in Dr. Lawrence Afrin in your search engine his website should come up with email contact information. Good luck and dont give up

Bren

[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

[Maiysa]

I was reading back at some of these posts. My son has Crohn's and I was reading that they are finding large amounts of mast cells in crohn's patients too. I don't have POTS, but autonomic neuropathy, but my mast cell level or tryptase is 11.6. And I'm quit sick. But the doctor here told me not to worry about it. So I'm also grateful for doctors who are accessible for those who can't get out or who are stuck with doctors who don't think 11.6 tryptase is a big deal when it clearly states on the blood test that it's an abnormal reading. But I understand Rama's suspiciousness. I have also read that mast cell activation isn't as rare as they used to think it was. But don't know what that means. But that mastocytosis is still rare. And of course that's only one articles opinion. Sometimes it's best to wait to see what WHO says. (World Health Organization) I hope that makes sense. And just having a tryptase level that is elevated is also supposed to mean that it's positive for some sort of mast cell issue. I think the criteria used to be 4 but I think they have even lowered that. And Bren is right, even if one does not have an elevated tryptase level and has all the symptoms and if they respond to Claritin or an H1 & H2 inhibitor, they are calling it MCAD. IT's just that some doctors are not aware that they changed the criteria for Mast Cell. So reading a blood test would make sense on diagnosis if the symptoms are also there as well as POTS or some form of dysautonomia.

I also heard that they are having a summit or conference where they are going to try to agree on what the official WHO criteria is for EDS 3 also. IT is supposed to be happening soon. There is also new information on this disease that doctors are not aware of as well. I know this because I went to several doctors trying to get a diagnosis after being diagnosed with hypermobility. A few used the old criteria for diagnosis. And I can't blame family doctors as things are changing non stop with diseases. It's easier for us to be aware since we are watching and reading articles to help ourselves and our own disease. Doctors have so many patients now days too. At least here they do.

From what I read EDS 3 is genetic, but interesting that we are all having a lot of these same issues. But what came first the chicken or the egg? Mast Cell, EDS or Dysatuonomia? I think they will have answers very soon since some studies are now being done because of all three of these rare issues showing up in a quite a few of us.

Good health to All.

Maiysa

[futurehope]

well said futurehope and christy.

futurehope, do you ever get this burning feeling inside your body, and frequent diarrhea and urination after an attack? I also feel weird when this is happening, like i might pass out.

I have had two "attacks". There was no burning feeling involved, but diarrhea, extreme wooziness, extreme weakness, high blood pressure (told to me when I was in the ER), and obviously I felt that something was really wrong and that I was going to die or something. It's awful.

Honestly, though, if you go read on a mast cell forum, you will see that this disorder can present in various ways, because it has to do with by-products of mast cell degranulation.....the release of chemicals that should not be released if mast cells were behaving normally.

For years I ignored pursuing this diagnosis because I figured I never had an anaphylactic shock episode, so I did not have mastocytosis. Case closed. I never considered pursuing MCAS at all until I listed my symptoms for the people on the forum, and also for Dr. Afrin (bless his heart), and the consensus was it would be wise to rule it in or out. So, for years I had been at a stalemate. But......

logically speaking, it appeared to me that there had to be an underlying disorder causing a multitude of my symptoms. As Dr. Afrin told me when I just saw him, either I'm incredibly unlucky with all my health issues, or I am correct in my assumption of an underlying cause.

Praise God we have some doctors looking into all of this is all I can say.

[issie]

Looking forward to more answers

Issie

[ramakentesh]

perhaps i was harsh with the diagnosing over the internet comment.

However my advice is to proceed with informed scepticism.

we have to be open minded enough to consider the possiblities

This is exactly my point. Half the statements I hear frequently on this site are assumptions.