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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Anaphylaxis required for diagnosis? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1350601563 Message started by Jewels on 10/18/12 at 12:06:03

Title: Anaphylaxis required for diagnosis?
Post by Jewels on 10/18/12 at 12:06:03

Hello everyone. I am new to the forum and new to mast cells in general. I have been diagnosed with EDS hypermobility type and have a variety of issues that have been loosely linked to mast cell disorders. I recently found Dr. Diana and her information regarding mast cell disorder in those with EDS and became very interested in learning about these illnesses. My big question is does anaphylaxis have to be present for a mast cell diagnosis. At this time I do not have anaphylaxis, but my grandmother has for a very long time. Just medications at this point. She's scared to death to take any medication due to the number of times she's almost died. I am currently working with a mast cell specialist, but we are in the very early stages of researching my issues. It's looking like a mast cell disorder diag will probably not be made due to my lack of anaphylaxix, but I am hopeful that he can help me with my more typical issues (asthma, allergies). Not questioning him, just curious if anyone here does not have anaphylaxix, but yet a mast cell disorder. If so, how was that decision reached?

Title: Re: Anaphylaxis required for diagnosis?
Post by Joan on 10/18/12 at 12:55:40

Some people have anaphylaxis from a mast cell disorder. We call them "shockers." Others don't have full-blown anaphylaxis, but may have some symptoms of it some of the time, such as tachycardia, GI issues, breathing difficulty, pain, hives, blood pressure fluctuations, etc. If they don't have major reactions most of the time, we call them "leakers," because their mast cells leak mediators constantly, but slowly. Shockers have massive degranulations of mast cells within a short period of time and go into anaphylactic shock.

So, the answer is no, you don't have to have anaphylaxis to have a mast cell disorder. MCDs can cause certain abnormal blood tests, e.g., tryptase. Symptoms often occur from eating foods or environmental exposures when IgE allergies are not present. Some people with MCD's have that and true allergies, too.

I'd recommend seeing a mast cell disorder specialist to rule it in or out based on testing.

Title: Re: Anaphylaxis required for diagnosis?
Post by larken on 10/21/12 at 22:42:20

I am a bit of a combo case. I am normally a leaker, but I have gone into anaphylaxis three times over the past three years, all caused by sudden strenuous exercise, like running for a plane.

I feel fortunate that it's a trigger that's relatively easy to control. I warm up well when exercising and arrive in plenty of time for planes these days!.

Title: Re: Anaphylaxis required for diagnosis?
Post by Joan on 10/22/12 at 07:55:44

Any kind of stress, physical or emotional (even including exercise or heat or happy excitement) can trigger mast cells. Pre-medicating with extra antihistamines can help, too.

Title: Re: Anaphylaxis required for diagnosis?
Post by Jewels on 10/25/12 at 10:10:25

Thanks so much everyone. The mast cell specialist has determined that I do not have a mast cell disorder. No testing performed, but I do not have anaphylaxis and that is his final answer. He will be treating me with allergy shots for my extreme reactions to environmental allergens. Testing shows only a very slight allergy to pork. Are there different types of mast cell doctors? Maybe I should have my family doctor order a tryptase test to be on the safe side.

The flushing is really getting on my nerves. My face, chest, neck, and left ear were all flushed for around 3 hours last night. It used to be just here and there, and last for only 20 or so minutes. Usually just one body part or from time to time my face and ears. Just getting worse and worse now. I don't know if that might be because I was off of allergy medication for testing or not. Stress sets it off VERY quickly. Just thinking about it my left ear is now starting to feel hot. My heart rate has been doing crazy things lately. Typically around 65, but it's been bouncing between my low normal to 90s and low 100s the past few weeks. Each doctor visit we're looking to see what kind of crazy we will find. Same with blood pressure. It goes from quite low (80s over 60s) to 120s/80s. I know 120/80 isn't necessarily bad, I'm just not used to it being that high.

In the past year I have been diagnosed with celiac disease, autoimmune pituitary, and autoimmune thyroid. Many years ago I was diagnosed with interstitial cystitis. I don't know what's going on, but for whatever reason my body is attacking itself and doing strange things.

Title: Re: Anaphylaxis required for diagnosis?
Post by Joan on 10/25/12 at 11:34:38

Something is not right here. The "mast cell specialist" says you don't have a mast cell disorder without ordering any testing? This is not a real mast cell specialist! There are a number of specific tests that look for too low and/or too high mast cell mediators. Abnormalities on the tests, especially when there is some relief of symptoms with antihistamines, indicates a mast cell issue. Elevated tryptase is almost always from a mast cell issue.

Flushing is, in fact, a sign of anaphylaxis in mast cell disorders. My flushing either starts with or is sometimes isolated in my ears. They get red and hot. It's one of my early warning signs that something is beginning that needs my full attention. Low or high BP (either one), high pulse rate, diarrhea and nausea (and/or vomiting) are also signs of anaphylaxis. If certain other diseases are ruled out, such as carcinoid syndrome and pheochromocytoma, then there is very little else it could be besides a mast cell disorder.

There are only a handful of specialists in mast cell disorders. If you post your location, someone can recommend a doctor nearby who won't blow off a very serious symptom.

It's certainly possible to have both a mast cell disorder and environmental allergens. I have both.

Title: Re: Anaphylaxis required for diagnosis?
Post by Jewels on 10/25/12 at 13:20:18

Thank you so much Joan. I am in North Carolina. I had no idea those things were symptoms of anaphylaxis. I guess I do have some anaphylaxis symptoms after all, just not the full-blown next to death variety. His indication was basically I don't look the part because I'm not having to use epi pens. Maybe his training was focused only on severe cases. He studied under Dr. Metcalfe. Does this illness come in stages? Eventually could my symptoms morph into full blown anaphylaxis? Seem to be genetic in any way? My flushing almost always starts at the top my left ear then the entire ear. Sometimes it's my face next, other times my right ear first. This started about 2 years ago.

Title: Re: Anaphylaxis required for diagnosis?
Post by Doozlygirl on 10/25/12 at 17:31:24

Something does sound fishy here. Dr Metcalfe has been involved with mastocytosis research for decades, but the NIH is known to to NOT recognize and treat MCAS.

Jewels, just because you are not facing full blown near to death variety of anaphlaxis, doesn't mean you're not facing anaphylaxis. There are four different stages, as listed in this emergency trifold from the TMS:

http://www.tmsforacure.org/documents/TMSERBrochure.pdf

Anaphylaxis Severity
Anaphylaxis symptoms can occur on a continuum:
Grade I: Cutaneous signs such as hives or rash.
Grade II: Cutaneous signs, and hypotension, tachycardia, presyncope, dyspnea or GI distress.
Grade III: Profound hypotension, bradycardia or tachycardia, cardiovascular collapse, confusion, bronchospasm, hypoxia (SaO2 <92) and GI distress
Grade IV: Pulseless electrical activity (PEA) or cardiac arrest.

Dr Afrin told me that Epi is only helpful if I have angioedema/swelling in the throat/difficulty breathing that continues despite taking my other emergency meds. I have had throat swelling about 10 times, and IV Benedryl pulled me out of it, only had epi once (given to me during delayed alergy skin reaction after explosive symptoms came out of nowhere). A different time, a paramedic did not give me Epi, even though I was in "full blown" anaphylaxis, as Benedryl brought me out of it. That line of thinking isn't true. I tend to get really low BP and face syncope/presyncope as my most severe common reaction, which falls under late Grade II/early grade III. Epi doesn't help the really low BP, but dye free Benedryl liquid gels sure do help me.

Years ago, an allergist told me that I should always be prepared as the next time could take less than 1/2 the time to progress.

Did you find that doc on this forum? I suggest finding a recognized mast cell specialist who understands MCAS. They will rule out SM first. Asthma, allergies and IC are all mast cell related, so it is not a stretch here.

Best wishes in finding answers.
Lyn

Title: Re: Anaphylaxis required for diagnosis?
Post by Jewels on 10/26/12 at 05:02:38

Ahh, that makes sense. I did find the doctor here, Dr. Lichtenberger. Sounds like I might need to try to make a trip to VA or SC. If there are any closer than that I'm all ears! Thank you all so much.

Title: Re: Anaphylaxis required for diagnosis?
Post by Jewels on 10/26/12 at 07:32:47

Just got off the phone with my family doctor's office and they have no issues with testing whatever I need. I'm looking around the forum and have found the following tests that have been used for MCAS mostly from Dr. Afrin:

serum tryptase, serum chromogranin A, (chilled) plasma histamine, (chilled) plasma prostaglandin D2, (chilled) urinary N-methylhistamine (24-hour collection preferred over a random collection), (chilled) urinary prostaglandin D2, (chilled/stat) plasma heparin)

GI biopsies CD117, Giemsa, tryptase, CD25 and CD2, and toluidine blue stains. More than 20 mast cells per high power microscopic field = abnormal then do KIT-D816V mutation testing.

24-hour urinary prostaglandin D2 (PGD2)

I have an appointment 10-30-2012 and will hopefully have a decent amount of information to provide her. I don't know how many of these they can do, but we'll see.

Title: Re: Anaphylaxis required for diagnosis?
Post by DeborahW, Founder on 10/26/12 at 15:18:45

It is extremely odd to read that a mast cell specialist would diagnose you with not having any form of mast cell disease without any form of testing whatsoever, especially in light of the fact that MCAS is often diagnosed by testing negative to most things. So, either the doctor is not knowledgeable or you misinterpreted what he told you.

Either way, it is important for everyone to know that there are several different forms of mast cell disease. Some will present with fullblown anaphylaxis, some will present with various stages of anaphylaxis (and then lead to fullblown), some will present with skin issues but not systemic, and the list goes on. My symptoms were never diagnosed by multiple ER doctors or brilliant internal medicine doctors as anaphylaxis. Yet, that is exactly what I was experiencing when I saw those doctors. The reason being that anaphylaxis is tricky and can disguise itself as other conditions if the patient does not have any breathing issues, which I did not.

There are so many symptoms that we all can have that could actually be mast cell disease. Without testing to determine negative or positive, it is very difficult to determine.

As for allergy testing: if I even suspected I could have a mast cell disease, I would NEVER go near allergy testing. That seems like a quick was to make oneself permanently worse or even cause a fatal attack. Now that is just my own opinion, but I feel strongly about it.

Title: Re: Anaphylaxis required for diagnosis?
Post by DeborahW, Founder on 10/26/12 at 15:34:18

Lyn,

You mentioned that you were told to only do an epipen if you had angiodema or throat swelling. Dr. Akin told me to use an epipen if I felt that I was going to pass out. (I don't have breathing issues, yet I do go into full anaphylaxis.) Just thought I would share his advice for me on when to use an epipen. Luckily ever since that advice, I have always stopped my symptoms with meds before they got to that passing out stage, and thus I have never had to use an epi!

Title: Re: Anaphylaxis required for diagnosis?
Post by Doozlygirl on 10/26/12 at 19:45:11

Deborah,
Thanks for sharing what Dr Akin shared. Years ago, Ive had drop attacks and have had my forced sleep episodes (similar to what Lisa faces), but had none of them since recognizing my warning symptoms. I too have learned to treat these episodes much earlier and I lay down immediately when I am presyncope. My presyncope happens when my BP bottoms out and is definitely orthostatic. Grabbing my benedryl, chugging water, and laying down has helped me pull out of it before losing consciousness. Thanks.

Jewels,
Thanks for sharing your docs name. It too bad, as there were high hopes that this doc "got " it. It sounds like he doesn't "get" MCAS and his perspective is from the SM, CM viewpoint. He may read our comments someday, as he has posted on the site. Too bad he couldn't provide guidance or give you support. Thanks for sharing your experience so others can be informed when choosing a doc. Keep us posted.
Lyn

Title: Re: Anaphylaxis required for diagnosis?
Post by Lisa on 10/27/12 at 00:59:54

I'd like to step in here for a moment please. Doozlygirl, I don't think we can just write off Dr. L based only upon Jewel's experience. We don't know what tests he ran and why he came to his conclusions. Let's not be rash and go and write off a good doctor who just came out from under Dr. Metcalfe's tutilage. I'm not saying that Jewel is wrong. I'm only saying that it takes a great deal to become a physican and to get into the NIH isn't for just any old doctor. You've got to have some pretty excellent qualifications to get to that spot.

Yet what my suspicion is is that the doctors who come out of the NIH and Dr. Metcalfe's mentorism are going to think and behave as he does. Dr. Metcalfe does not fully agree with the MCAS diagnosis and considers it "controversial" according to another member here. He is known as a hard liner for ONLY the SM diagnosis and patients who come out of the NIH are often given the diagnosis of IA and not MCAS. In fact, he has never been known to give the IA diagnosis. And if you consider that Jewel is still unsure as to whether or not she goes into anaphylaxis, in telling a doctor that she doesn't, the doctor is going to take her word for it and rule it out then as a possible diagnosis. So, if you think about it, if Jewel came back with zero results of any kind of alteractions, which others here have done as well, and she's not going through anaphylaxis, then that ends up giving the doctor NOTHING TO GO ON! Are you seeing the thought process here?

This is something that Dr. Akin and Dr. Castells both have also done with patients here on the site. In fact, Heather just recently saw Dr. Castells and she gave Heather a diagnosis of IA and not MCAS! Why? Because the only marker seen off with Heather is the High Affinity IgE marker and due to lack of studies, this has not been directly diagnostic of anything but Chronic Urticaria studies. Even Dr. Castell's hands are tied! But because Heather goes into anaphylaxis, this was the reason why IA was the diagnosis. Is it a part of MCAS? Probably, but doctors, especially ones with big reputations, have to go by the books in the States and it's really tricky business if they step outside of their comfort zone.

So, let's not be rash to judge Dr. L yet. We also must remember that all of us, especially in the beginning, are totally ignorant as to what tests are run on us and what they indicate and what the doctor is seeing. I remember very well in the beginning as to how hard it was to just have all kinds of testing done without a single clue as to what it was or what it meant and when my tests returned all normal in the beginning it was extremely discouraging.

I think Jewel that you should go on to another specialist and Dr. Afrin is known for thinking outside the box, which may be necessary in your case. I am willing to bet that if Heather went to him, that he would run some of the other MC marker tests which are rarely run on us and end up finding more proof, something that Dr. Castells didn't do. Would that mean that Dr. Castells is a total incompetent? NO WAY! It's just their methods are different. Does that make Afrin better? NO to that either. He just thinks outside of the box but he has is weaknesses too, like ALL OF US.

Remember everybody, each case is a case and is individual and with a disease as complex and difficult to diagnose as this we MUST HAVE PATIENCE WITH OUR DOCTORS!!! We have way too few of them as it is and Dr. L is only beginning in his journey into MCASlandia. We MUST give him time and understanding. He seems to be a caring man and he seems to me genuinely INTERESTED and willing to learn. Just the fact that he is a member here and is willing to listen to us and our stories and challenges shows that he's got the right heart and intentions and any doctor who is that caring towards learning more shows that he will grow with time!!

Be KIND please! We all are novices when it comes to medicine!

Lisa

Title: Re: Anaphylaxis required for diagnosis?
Post by redbird on 10/27/12 at 02:16:30

I would like to add just a tad to what Lisa has said here....the reason that Masto is so hard to diagnosis is that most of us are not alike....it would be so much easier if that were true...folks have the same symptoms for the measles, chicken pox or even cancer most of the time but with us it is hard to find a few people who suffer from this disease in the same way..or have the same symptoms etc..
I also know that some doctors like to think outside the box and some follow the guidelines(for lack of a better word)....and I also find it hard to write off any doctor who knows anything about masto...they are too hard to find..
just my thought
redbird

Title: Anaphylaxis required for diagnosis?
Post by DeborahW, Founder on 10/27/12 at 03:10:52

There is too much judgment going on here, and I really don't approve of it. As this is a forum, everyone is entitled to share their opinion. Everyone reading needs to understand that this is their opinion. What you choose to do with that opinion is your choice.

Now, I am not going to defend Dr. L or defend Jewels. However, it appears that everyone is getting away from the point. Jewels stated that she felt that she had no testing done at her appointment and that she does not have anaphylaxis. We don't know if she doesn't have anaphylaxis based on her opinion or the doctor's opinon.

What we can see is that she was told to go off of meds to do allergy testing. Do I personally agree with doing that? Absolutely not. My allergist told me that he would never have me do that due to possible dangerous reactions, and he tested me by drawing blood and doing blood tests.

We also hear that Jewels was told to begin allergy shots. Would I personally do that if I was having constant flushing? No way. To me flushing is indictating some sort of mast cell symptoms and my personal opinion is that allergy shots would make one worse, possibly permanently so.

I don't see why we are jumping to conclusions regarding that Jewels has been told she told she doesn't nave IA or MCAS. From what she reported, the only thing she mentions is that she doesn't have a mast cell disease. She doesn't say that the doctor specifically mentioned the other ones and it is not fair to the doctor to say that he must not be one to diagnose MCAS and only diagnoses IA instead. No one knows what labels and conditions he diagnoses, so let's not say that he isn't open minded because that isn't fair to him, especially in light that Jewels (the patient who saw him) doesn't say that.

So, the concern for Jewels is that she believes he told her she has no mast cell disease. What is her next move? Jewels, I think that since you are in NC, you are close to Dr. Afrin and you should go see him. It doesn't mean that you are ripping on Dr L to get a second opinion. In fact, all good doctors know that second opinions are important to patients and they don't take it personally. My doctor is Dr. Akin, but if I felt that Dr Castells knew more about MCAS/IA (I have IA), I wouldn't mind going to her and I am sure he wouldn't be insulted because I did so either.

On a side note, IA and MCAS are both the same mast cell disease but one is a more extreme version of the other. This comes from when I posed this question to Dr. Akin. I, myself, don't actually understand what that means entirely, but they are both mast cell disease and in the same "family" shall we say.

Lastly, discussion is not allowed to be a roast of Dr. L or Jewels. I believe what Jewels has written. I believe that perhaps there could be more to the story -- I know that my memory stinks and I could report something and unknowingly leave out part of the important details.

Jewels, should Dr. L want to add any information, he woud not be able to here because he can't talk about your case. If you would like to post that he is welcome to, then he could if he were interested. I can't have anyone doctor bashing and the doctor is stuck by not being able to explain things. I also won't have anyone patient bashing, so if anyone is about to start bashing Jewels, hold off because I won't allow it on the forum.

Jewels, I think it is good that you shared your experience, because people can decide for themselves what they choose to take from it. The purpose of this post, though, was not to discuss Dr. L (in fact she never mentioned his name until specifically asked) and to help Jewels find her next move and next doctor to see.

Title: Re: Anaphylaxis required for diagnosis?
Post by Jewels on 10/28/12 at 04:22:04

Oh goodness, sorry I created all this! I want to start by saying that my mother and I have both very much been pleased with Dr. L. He's very young, but very kind and interested in helping. A scientist for sure. I like to think that if I end up with tests that can prove I have a mutation that Dr. L might be willing to treat me. It probably wouldn't be his cup of tea, but at least he knows SM and if the treatments are the same..... who knows. He's within an hour drive of my home and 40 minutes of work.

I am completely new to mast cell anything. I simply came upon Dr. Diana's info out of TX and decided I should look into it. Especially since I have severe asthma, terrible environmental allergies, autoimmune thyroid (new as of this week), autoimmune pituitary, celiac disease, and interstitial cystitis. For family history: My mother had endometriosis, my aunt sister and grandmother have had ovary cysts, and I kid you not - Every single female on my mother's side has had extensive medical issues mostly revolving around the endocrine system, heart, and colon. And we all have migraine headaches. We all pretty much seem to have a mystery illness and years and years later nobody has figured it out for any of us. I feel that we likely all have Ehlers Danlos Syndrome. I know that myself, sister, and mother do. I know heart and colon issues come along with that, but something very serious is going wrong in my family and I am determined to figure out what it is. I am personally finding that I don't know my own symptoms anymore because I'm used to feeling this crappy all of the time. Feeling bad is my normal.

All of that aside, I was sure to let Dr. L know that I am mast cell ignorant. He acknowledges that some of my issues have been linked with mast cells, but to him I simply do not look the part of mast cell or ehlers danlos syndrome. I have learned why that is on both counts. He studied in the NIH and apparently SM is what they work with. He didn't seem interested in my flushing and was looking for my throat closing up. I did not know all of the symptoms of Anaphylaxis, but even if I had it wouldn't have mattered. My mother and I both discussed how oddly my blood pressure and pulse were acting as well as my body temperature at the last appointment. I do not have the symptoms he is looking for. My grandmother does, but not myself. He told me a few times that mast cell disorder is a very serious and severe illness and that people with it can almost die every day of their lives.

He also studied Marfan's. I am probably the farthest thing from a Marfan's look that there is. I am short (5'0")and chunky (overweight), I am not tall, skinny, lanky, and pale. My chest does not cave in. I am EDS - Hypermobility and he admits he is not familiar with that diag and does not intend to dispute my doctor's diagnosis or attempt to treat it. He has advised that I do not tell doctors that I have EDS because he has seen too many patients end up on narcotics that basically ruin their lives. I can appreciate his trying to save me from that. My impression though is that he does not believe I have EDS because his idea of EDS is again very severe extreme illness. I have the least severe variation of EDS that exists.

Dr. L does not appear to believe there is more than one mast cell disorder. Now that I know more about this I have taken the steps to get as much testing completed as I can and will then attempt to get an appointment with Dr. Afrin. He's close and seems to be very interested in finding an answer. I would love to find that I do not have a mast cell illness, but I want to be sure one way or the other. If I do not, then I keep searching for whatever it is that is destroying our bodies.

As far as testing goes, Dr. L reviewed previous testing from my other doctors (allergy skin, allergy blood) and performed his own environmental allergy test. His team seemed to be as shocked by my allergy skin testing as the previous allergy team that tested me a few years ago. I continued reacting so much that they did a recount on some of the spots. 6 days later I still have one reactive spot on my back from the skin test. I wish I knew which one it was. Whatever it is, I need to avoid it at all costs. He said he feels no need to continue further testing at this time. I am not one to fight or argue with doctors, so I will have the testing performed elsewhere and if I find something he might acknowledge I may contact him in the future.

Title: Re: Anaphylaxis required for diagnosis?
Post by Joan on 10/28/12 at 09:25:17

Jewels,

These things happen on the forum from time to time. It's not an easy way to communicate, and sometimes we think we know what's going on, but really don't have enough information to come to an accurate conclusion. Luckily, we have a forum founder/administrator who keeps the goals of the forum at the forefront and moderates when something controversial comes up. The thing we all have in common is wanting, first and foremost, to help patients find out what's going on in their bodies and to get the best available treatment.

What you've just experienced is not uncommon among mast cell patients (or other patients with possible rare conditions). MCAS is still a controversial diagnosis in the eyes of most doctors.

Although at this point there's no way to tell whether his assessment is accurate in your case, you have doubts, and that's why you need to continue searching. You'll know when you feel satisfied that MC disease is definitively ruled in or out. First, all the conditions that can cause similar symptoms must be eliminated. You have some signs that could point to a mast cell disorder, and others that may not be related. Often MC patients have other immune or auto-immune conditions, but they're not necessarily related to MC disease.

I believe your plan is a good one, to do preliminary testing and to see Dr. Afrin. Dr. Afrin will be a good choice, because he's currently researching markers that can be used to definitively diagnosis MCAS. He will also test for SM. If you haven't already checked with his office, do ask what testing they like to have in advance. Some doctors prefer to have some tests done at their own facilities, so you wouldn't want to have to repeat them. Most MC docs do have some they prefer to be done ahead of an appointment.

Regarding your allergy testing, you have a right to the results of your skin and blood tests. It's very important to get those so, as you said, you can avoid the things that caused reactions. You might also look into a low histamine diet to see if any foods are triggering you. The URL is posted on this forum for the Chronic Urticaria Society website that has a chart of low histamine foods and what to avoid. For a lot of people, this is a good place to start to see if foods are triggering them.

Good luck, and let us know how you're doing. What you're trying to do for your whole family is very admirable!

Title: Re: Anaphylaxis required for diagnosis?
Post by Doozlygirl on 10/28/12 at 14:28:50

Jewels,
I have seen Dr Afrin twice and he diagnosed me with MCAS affter a local "expert" told me I didn't have a mast cell disorder after reviewing my low trypase and my skin biopsy.

I first saw Dr Afrin in May and at that time, he didn't want any additional mediator testing done beforehand, as he preferred to run it in his own lab, where he had a better shot of ensuring the samples were kept chilled from collection through testing. You may want to call and see if that changed at all.

Feel free to send me a PM if you have any specific questions reagrding my experience.

Lyn

Title: Re: Anaphylaxis required for diagnosis?
Post by DeborahW, Founder on 10/29/12 at 02:24:56

I agree with Doozygirl. I have also heard that Dr. Afrin likes to have the testing done in his own labs to ensure proper results.

Title: Re: Anaphylaxis required for diagnosis?
Post by Jewels on 10/30/12 at 04:02:04

Thank you guys so much! My family doctor's office is in the process of sending my referral and medical records to Dr. Afrin and I am in the process of contacting all of the specialists I have seen to send my records. My family doctor appeared to be overwhelmed by the information I provided her today, but willing to treat me if she needs to. I have talked to Dr. L's office today and they believe that if I can find proof of a mast cell mutation that he will be willing to work with Dr. Afrin to treat me.

Title: Re: Anaphylaxis required for diagnosis?
Post by goldielove on 10/30/12 at 11:23:25

MY last post was forgotten :( I wrote but then somehow someone wrote right after me and I never had my question answered but it goes along with what Jewles just wrote I did write that I am sorry I have not been on the forum as I needed time to regroup and rethink what I am talking and to try and think positivly this group is wonderful and a world of knowledge One of the things I would like to address is what is meant by a mutation basically all of my testing came back negitive based only on my symptoms I was dx with a mcad by two mast cell Dr's I had dermographism and pots maybe that was something that is common to mcad but I was told in mcad you do not anywhere see any increase in mast cells and its strickly dx on your symptoms anyway about a month ago I recieved back my GI bx from two years ago that was retested for mast cells what I was told was that I had over 80 mast cells in my colon and it was still producing tryptase and that is very abnormal so that basically confirms my disease but here is the but why was I told that in mcad you should not see any increase in mast cells anywhere if you have MCAD this can get very confusing when you see more than one Dr. b/c they can tell you such different things I am now being refered to a gentic MD for more testing for another possible disorder UGH on the bright side I guess its bright not really I broke down and cried I was approved for disability today it was a happy but sad day for me and hubby, my thoughts are I have done all that I was told to do and am I better yes but can I function well no ok that is my two cents happy to be back :)

Title: Re: Anaphylaxis required for diagnosis?
Post by Joan on 10/30/12 at 16:30:16

Hi Goldie,

Glad you're back, but sorry this has been a confusing process for you! MCAD is an umbrella term, and it can include people with abnormal test results and those with symptoms, but normal tests.

The important thing now is that you're being tested and getting some answers. That will lead to tweaking your meds so that you can feel better. If you don't mind saying, who are the mast cell doctors that you've seen and where are they?

Hope getting to the bottom of this will give you some peace of mind.