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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> New, with questions http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301240726 Message started by kirkmc on 03/27/11 at 04:45:26

Title: New, with questions
Post by kirkmc on 03/27/11 at 04:45:26

Hello.

I've come here to ask some questions and get some information. Here's my story.

A couple of months ago, I had an incident when I was out walking, and I felt my hands start swelling. When I came home, I could feel this swelling throughout my body. It wasn't visible; there was no edema. But it lasted for a while, and the next day, I felt it again. At the end of the day, the feeling increased, and, thinking it was an allergic reaction to something, I took an antihistamine, and it got slightly better.

The next day I went to see my GP. He said he thought it was some kind of allergy, and gave me some cortisone. I took that for 4 days, and the swelling went away.

A few weeks later, the same thing happened, and it seemed that walking set it off. Back to the doctor, who was, by now, intrigued, and who ordered a bunch of blood tests to check for allergies. Another episode - after the tests came back negative - led him to start wondering about this problem, and he mentioned that he no longer felt it was an allergy, but mentioned mastocytosis, because, oddly enough, given the rarity of the disease, he had a patient affected by it.

So, recently, this swelling feeling has been occurring pretty much every day. I notice the feeling first in my fingers - I write for a living, and type a lot, so when my fingers are affected I feel it right away. Then the feeling spreads to my feet, and sometimes I get a kind of antsy feeling all throughout my body. Antihistamines seem to reduce it a bit, but not entirely. I've noticed some triggers that increase it, such as red wine. It generally begins late morning, and waxes and wanes during the day, usually being strongest at night.

Looking up some info about mastocytosis, I've seen a number of symptoms that I've had, some for a long time. I have some other issues - notably a neurological problem, which certainly has no relation - but so far it seems this has something to do with histamine.

I'm fortunate to have a very good, very curious GP; this is rare where I live (in a rural area). He's going to look into this as much as he can. But I'm trying to find what sort of differential diagnoses could be in play. It seems that there are actually very few diseases that lead to increased histamine, and, since I do feel a reduction in symptoms when taking antihistamines, it seems likely that this is the cause.

So, what should I - and my doctor - be looking at? What other conditions could lead to this, if it's not mastocytosis? What are the main tests that are used to diagnose this?

Thanks for any help you can offer.

Title: Re: New, with questions
Post by Josie on 03/27/11 at 06:07:10

hello Kirkmc ,

I am Josie and I have a condition known as idiopathic angiodeama , my diagnosis is not complete .

This is a very informative and lovely forum ;-) By GP do I guess you are in the UK ?? I am in Bristol , UK .

Without your full list of symptoms it is difficult to clearly ascertain a direction . I am very happy you have a good GP .

I think mastocytosis is a possibility . I also think a condition called heridatory angiodeama may be worth investigating for . mastocytosis is defined by the world health organisation . there are 3 vids on you tube titles mast cell activation symtomology . These are by the top mastocytosis doctors in the US .

In testing for mastocytois there are conditions which need excluding which mimic mastocytoisis . these are carciniod syndrome and pheaocryocythoma . These are simple tests .
carciniod = measurement of 511HA - 24 hour urine collection , chromatogranin A - blood test , a chemical from the condition
These 2 tests together are conclusive .
for the pheao - a 24 urine collection for cateclamines . if this is negative , no phoaeo .

For mastocytois , you need a measurement of mast cell tryptase first this is a blood test . This chemical comes out of mast cells only and when they burst , releasing histamine and other chemicals .

In this post you are describing swelling , which is known as angiodeama - swelling of tissues . In light of this I think testing for the causes of angiodeama is a wise route to take .
Angiodeama can be from 3 broad groups - autoimmune , kinin based and histamine based . So each of these groups needs testing for .

Autoimmune is where your immune system attacks your own tissues .Which through various processes causes swelling . A broad work up for autoimmune diseases and some specific for certian conditions is the practice . These include but not exclusively :-
CRP / ESR , ANA , plasma electropharesis , urine elrctropharesis , thyroid - free t3 , free t4 and thyroid peroxidase enzymes . Adrenal - adrenal antibodies . Lupus as before . Antibodies IGE , IGA , IGG, IGD .

Compliment is your inborn immunity , these levels need testing to see if they reveal anything . In terms of angiodeama the one that shows clearly in compliment is heridatory angiodeama . The tests here are C1 and C1 esterase function ( done together ) C2 , C3 and C4 .

From your first post , with the information I have , I think this is an important test to have . This is the kinin route of angiodeama ( swelling )

For histamine based the test for mastocytosis is done initially . Tests for other released chemicals can be done . Depending on where you are , these may be offered by a medical team r may ( in the Uk ) need to be sought privately at the current time . This is because these chemicals come from more than mast cells ( histamine releasing ) so are not seen as diagnostic . In this it is not conclusive but in a picture with symptoms and other factors can aid diagnosis .

These are 24 hour urine collection for histamine , prostiglandin (s ) , methylhistamines ( lasts longer in the body ).

To explain , mastocytosis has extra mast cells , mishapen , which are triggered by many factors ( see articles in triggers by Deb our forum lead ) these cells contain histamine , prostoglandins , heparin and other chemicals . The triggers lead the mast cells releasing the contents and the symptoms come from the chemicals and the level of the chemicals released . So in mastocytosis - not everyone - but in most cases the level of mast cell tryptase is high all the time .

Having a normal tryptase does not mean your natural level if mast cells are behaving . They can also be triggered by various things . A new diagnosis of mast cell activation syndrome has been sanctioned by the world health organisation . the diagnostic criteria have been published but it remains anew diagnosis with specific criteria .

With all these possibilities you may benifit from a immunologist doing this work or a mast cell specelist dependent upon where you are living .

Whilst all this is happening it will help you to keep a food / triggers and symptom diary as it may uncover some triggers for you .

This forum is full of so much great information . In each area there are articles which will help you ;-) The masto cell activation and conditions which mimic them section will give greater depth of the things I have mentioned ;-)

What allergy testing have you had ? as various types exist .

Please ask away , as we talk about EVERYTHING here ;-)

I hope this helps you on this road

Josie

Title: Re: New, with questions
Post by Starflower on 03/27/11 at 06:37:49

Hi kirkmc,

Welcome to the group!

It sounds like your symptoms are more annoying than disabling or even life-threatening (which is good!!). At this point, there are two things I would recommend to you...

1. A basic physical... are you generally in good health?

2. A baseline tryptase, which is a blood test that can be done at any time. A normal level doesn't completely rule out mastocytosis, but it would certainly make it a less likely explanation.

Has anyone in your family ever had swelling like this? (Ask, don't just assume). If so, then I would also ask to be tested for HAE, starting with complement levels. However... if the swelling goes down when you take antihistamines, then HAE (hereditary angioedema) is not the cause.

A lot of unrelated things can cause mast cell symptoms... cancers, autoimmune disorders, chemical exposures... that doesn't mean you have mastocytosis. Everybody has mast cells. On the other hand, sometimes people with indolent SM have rather subtle symptoms for decades before they get a diagnosis. All you can do is just get the baseline tryptase and see if anything turns up.

It's great that you have a GP who's willing to work with you and look for answers! As your test results come back be sure to get copies... you're always welcome to post them here to get our feedback.

Heather

Title: Re: New, with questions
Post by kirkmc on 03/27/11 at 08:01:42

Thanks for your replies.

To answer some of your questions:

I'm not in the UK; I'm a lapsed American living in France.

My doctor has already done the basic auto-immune tests, and he says he can rule out anything in that direction.

My general health is not too bad. I have a neurological condition (which is definitely not causing these symptoms), I'm a bit overweight (due to some meds I took for a year or so for chronic pain), and my blood pressure is a bit high (I'm being tested by nephrologist for a few things before starting on BP meds). I do, however, have some problems with hypoglycemia, and this for about a year and a half. It's not clear what's causing this. In recent times, I had some serious acid reflux - this was about 2 1/2 years ago - which lead to me taking meds for a while. (I've noted that this can be a histamine-related symptom.) It came on very suddenly, with no real reason.

No one in my family has had anything like this. My family is very small (only my mother is left).

My GP knows me very well, so he's able to rule out a lot of things easily. He's done plenty of blood tests, and they've all been normal. One exception: I have slightly low potassium, which is why I've seen a nephrologist. This was discovered in 2002, and no doctor has been able to explain why. I also have a chronic vitamin D deficiency; again, no idea why, but it may be a problem of malabsorption.

Thanks again for your help. I'll not many of the things you've said and mention them to my GP.

Title: Re: New, with questions
Post by Lisa on 03/27/11 at 11:06:39

Hi Kirk and welcome to our forum!

I think it's very intriguing that you call yourself a "lapsed" American!! haha!! Very interesting way to say that you've been living abroad for a while. I guess that makes me one too because I've been living in Brazil for over 20 years, but I don't feel lapsed, well, except when the brain fog sets in, however! haha!! Brain fog is another word to say cognitive difficulties when we begin reacting.

Kirk, you are in good luck, France has a masto authority, Dr. Olivier Hermine and I've got his email and cell phone number. I'm going to give it to you in a PM and you can try writing to him.

Also, I will send you the contact information for Dr. Luis Escribano of Toledo Spain. Dr. Luis has a mastocytosis research center and is one of our highest authorities in this disease.

I've only spoken with Dr. Hermine only once, so I can't tell you how he is, but Dr. Luis is tremendous is will do everything he can to help figure out what is going on with you for he not only knows well the SM - systemic mastocytosis diagnosis, but he also knows the harder to find forms of the disease including the non-clonal form. He's really an excellent doctor and won't leave a stone unturned. So, for my money you'd be better off going to Toledo, if you can.

As to your symptoms, they do sound like masto, but it is important to do a check out for the other things that Josie mentions. Let me list them for you for she misspelled a couple of the exams. They are hard to remember and confusing since most of us only go through them once. Most of us who do not have any skin lesions end up going through these tests looking for the differencials and I went through the search for the carcinoid syndrome TWICE and even then kept my masto specialist on pins and needles until we had firmer proof.

The tests for Carcinoid Syndrome are:

24 Urine - 5-HIAA this is for methyl serotonins
Blood Serotonines
Chromogranin A - CGA

If any one of these are high, then more testing looking in the direction of the Carcinoid syndrome is needed. However, I do not believe that this will create this angioedema you are experiencing. So I tend to think that it's not really necessary except for the purpose of ruling out yet one more disease

As to the pheochromocytoma, this, and the carcinoid tumors are called Neuroendocrine tumors and they secrete hormones that cause all kinds of reactions. The carcinoid tumors are the tumor which gives off a constellation of symptoms that mimicks mastocytosis so very closely that there is often great confusion amongst doctors. My oncologist had a really tough time with me since I get hypertensive in a crisis, which mimics the carcinoid crisis - it took a while for us to find out that mastocytosis can create hypertension in anaphylaxis. However, once the crisis is over, the pressure should return to normal.

Yet, Josie's suggestion of the pheochromcytoma, although it does not produce the same constellation of symptoms as the carcinoid does, is a very valid suggestion since the neoendocrinal tumor is connected to the adrenal glands and this is what pushes the pressure up and it would not only be increased on a daily basis, but also go even higher in a crisis. I believe that Josie's correct in that the catecholamines must be tested, but in truth, Kirk, what you need to do for this investigation is to find an expert in neoendocrine tumors because these tumors are rare and there is a whole battery of exams which are used in complement to the major markers for these tumors. They are very difficult to find and challenge even the experts. I was seen by the two highest authorities in these tumors here in Brazil and my case confused them totally, but then, it should have been for although all of my symptoms lined up with the carcinoid syndrome, not a single test they did came back altered!! Why? Because I've got mastocytosis. In order to find a rare disease, you have very few exams which will point to the disease and unless you KNOW what you are looking for, it's way too easy to miss it!!!

Here, I'm going to make this easy for you, since I've already been down this path. If you go onto the ENETs webpage: http://www.neuroendocrine.net/excellence.html
you will find that they have listed a hospital in Paris which has become a research center for these tumors. Send an email to the people on the site asking for the contact information of these doctors, for they don't list it.

You can also go to the Carcinoid Cancer foundation which is an EXCELLENT site for support and information. http://www.carcinoid.org/patient/treatment/find-a-doctor. If you will scroll down you will find a doctor listed in Paris and can write to him. I know some of the people at the Carcinoid center foundation site and they are extremely helpful.

If you were to write to the doctor that is listed for France, and described some of the symptoms you are showing, he may be able to help you to know whether or not you really had to go to see him. His name is Philippe Ruszniewski and they list his email. As I said, I don't know that angioedema is one of the symptoms going on with NETs , but who knows. As to taking antihistamines and improving, this is not a sign that it is only mastocytosis or angioedema going on with you for these NETs do have histamine involvement and those patients must take antihistamines as well. Like I said, it take an EXPERT in these tumors to investigate you properly. Any old oncologist can't do it for they are extremely difficult and even those who are authorities in the disease have found themselves challenged by cases. So, it's worth investigating Kirk.

As to the masto tests, yes, tryptase is one of our major markers, but there are now recognized forms of masto which the high tryptase is not a marker. This has made the researchers/authorities take another look at this marker as well as the disease and they are finding out new things about the diagnostic processes as well as the forms of masto that they hadn't considered before due to this discrepancy amongst masto patients.

The problem with this disease, Kirk, and that which challenges the doctors is that not every patient who has the disease will consecutively show every marker. And example is my case in that my tryptase is normal, but my urine histamines are high, my blood and urine serotonin levels are way below normal and I have no way to test the prostaglandins. My case is very difficult and it was only through the pathological testing of biopsies that we found the answers. Not the normal case, but an example of how difficult it is to work up this patient. Only a few doctors really know how to hunt down masto and this is why unless you are in the hands of a doctor who REALLY knows it well, you won't find your diagnosis. I was in th ehands of an immunologist who had treated only 3 patients before I showed up in his office, but he had never diagnosed one before. He got totally lost with my case and didn't know whether or not to proceed with the hunt. I found a masto specialist and she knew how to do it. She is a dermatologist/pediatrician and encountered a number of the children who are the great majority of masto patients.

As Heather said, it's great that you've got a GP who has already encountered a masto patient for if it is that you have this, then your doctor can continue taking care of you after it's been found. However, this doctor is also able to seek out for other things and rule out a bunch of issues, helping to narrow down the field. But again for these two diseases, that of mast cell disorders and neurendocrine tumors, you need to find experts to do this workup due to how very difficult it is to diagnose. But, there's still other things that must be hunted for in your case and I have confidence that they will find it.

As to the low potassium and vitamin D, yes, this is found in masto patients, but it will be found in also the NETs patients - any disease which creates malabsorption will do this.

As to the reflux, this is also what I've got and this is typical for masto patients - our histamine levels are so high that it hikes up the gastric levels in the stomach. I was tested with a Phmeter and my reflux was found to be only during the day, something very unusual and it ruled out a number of other possibilities. Now that we know it's masto, it makes sense for when you are most active, while awake, you are constantly calling your mast cells into action and they are constantly dumping histamines. Thus the reflux only during the day.

I hope this is a help to you, Kirk. I'll PM you now with those contacts.

Good luck!!

Lisa

Title: Re: New, with questions
Post by Josie on 03/27/11 at 11:34:06

Hi Lisa ,

Thanks for clarifying my spelling ;-) and the other things I have mentioned .

Josie

Title: Re: New, with questions
Post by kirkmc on 03/27/11 at 12:07:17

Lisa,

Thanks so much for all the info. I'm going to research some of what you've said, and talk to my doctor as we go on with the tests.

Interestingly, you mention adrenal glands. I have a CT scan at the end of the week to look at them. The nephrologist I'm seeing is very confused by my low potassium - it's not very low, as could occur with certain tubulopathies (I was actually diagnosed with something called Gitelman's syndrome some years ago; I went to Paris to see a specialist in that disease, and he said the diagnosis was wrong, that my potassium wasn't low enough). So the new nephrologist wants to see if there's anything in the adrenal glands, and he's looking at the renal arteries as well. And he's also doing some blood tests that can only be done in the hospital. But the low potassium isn't a malabsorption problem; my urine potassium is high, so it's clearly coming in, then going out through the kidneys.

It's worth noting that when I have these swelling symptoms, my BP does not go down. I've had my doctor take it, and I've taken it myself at home.

Thanks again. A lot to read about and understand...

Kirk

Title: Re: New, with questions
Post by Lisa on 03/27/11 at 12:25:47

Hi Kirk,

As to the low potassium, I just had a test of mine come back accusing low potassium too. This is why I know that it can happen. I began eating bananas by the bunches and taking extra vitamines and it's come back up into normal ranges. As to vitamine D other's have said that their levels a very low too, but I've never tested mine, so I don't konw how mine are reflected here.

With all the diarrhea we all get, Kirk, it's not surprising that this happens with us. Now, whether or not you have these issues, I don't you for you don't mention having problems with diarrhea. But you are smart in pursuing these answers for you need to trace it back as to what is going on to cause this.

As to the pressure issues, it's good your BP doesn't drop. however, masto can cause increased pressure and decreased pressure and it doesn't always have a full connection with a crisis, but the tendancy is to show that when you're reacting, however. My pressure went down to 70/40 today, my lowest ever! This was when i was restign this afternoon.

You see, Kirk, the consistant Mast cell degranulation can be an issue as well as the acute mast cell degranulation. So, whether ist's a chronic situation or acute situation you body will react differently. The fact that you ahve excercise involved is very suspicious since the angioedema is a symptom of anaphyalxis and masto patients are the kings of excercise anaphylaxis. So, I can't blame your doctor to think masto.

But patients aren't doctors and I'm really glad you have a doctor who is pursing this for you for this is exactly what you need!! so, keep pushing for answers, Kirk - you'll find them!!

Glad I could help!

Lisa

Title: Re: New, with questions
Post by kirkmc on 03/27/11 at 21:37:54

I don't have diarrhea. Is that a "deal-breaker" symptom for mastocytosis? (Ie, one that everyone has?)

I made a list of the symptoms that I do have often enough that they seem to be continual. Some only started in the past couple of years. I've left in a couple of symptoms that are most likely caused by a neurological condition I have:

Arthritis
Muscle contractures and spasms
Dizziness
High bone density
Vitamin D deficiency
Low serum potassium
High urinary potassium
High blood pressure
Cold hands and feet
Essential tremor
Tinnitus
Weight gain
Acid reflux
Bloating
Hot flashes
Ammonia/chlorine smell in nose
Allergic reactions, with swelling and irritated mucous membranes, mediated by cortisone and/or antihistimines
Occasional itching with no visible lesion
Occasional eczema

Title: Re: New, with questions
Post by Josie on 03/28/11 at 01:04:21

Hi Kirk ,

Thanks for the list ;-)

Regards the potassium question i see your point . In this respect you may have low in and lots out as your body produces some potassium from biological processes . In light of this high urine potassium I think your doctor should check your pituatry as it controls many of the glands and hormone levels and so in turn salt balance . This includes your adrenals . i can discuss exact hormones etc if you wish but i dont want to over load you .

In respect to potassium the blood level is important and if it is high or low range it can affect your heart rate and rythym . You haven't said how low it is , But a heart tracing of electricity is advisable when it is out of range to make sure it does not need more quicker replacement to avoid any problems . This is done with little stickers on your chest , which conduct , the signal is picked up and transfered to a graph which , when analysed , will show if any action is required . This , in a worse case scenario will be an intravenous potassium infussion . these are a daily practice in medicine . I say this to reassure you it is easily rectified .

In the longer term , increased dietry potassium will help counteract the loss until the cause is uncovered and remidied .

Potassium and magnesium are very closely bound in their metabolism and levels . With a low potassium , although urinary loss is a likely cause , a check of magnesium level within normal range is required for us to keep potassium . So potassium will not rise without enough magnesium . So a check of this level is also wise .

Regards the diarrhoea , it is a common symptom but its not a deal breaker . Are you on any medications which are typically constipating ? As you have bloating.

I can see the symptoms which are more neurological . have these worstened since you potassium has been low ? As potassium has a role in all muscle contraction and I would be interested to know if this has changed . I have spasms in all my muscles at various times . 2 of the chemicals released from mast cells have the ability to cause spasms of smooth muscle. Smooth muscule , is designed for constant work with a very high threshold for fatige. Skletal muscule , is stronger but is more easily fatigued .

My symptoms which were felt to be neurological are :-
leg , arm spasms
wobbly
ataxic gait , with increased activity , left leg dragging
loss of feeling in hands from little finger accross
loss of grip
I ahve been fully worked up by neurology with a conclusion of carpel tunnel in my right hand . I attribute my arm and leg spasms to full lymph nodes pressing on nerves and angiodeama . This affects both the visable layers of external skin . But it also affects the layers in between organs and the organs themselves. So for me this is pelvic oragns being swollen and pressing on nerves causing pain and spasms .

The research regards mast cells in the neurological system is lacking . A condition we describe as brain fog , is well documented . This comprises concentration difficulties , irritability and is a recognised symptom of mast cell activation .

I am fortunate not to have contractures . These can be very painful . has physiotherapy had anything to offer you in this ? I hope I am not going over old ground for you . I just wandered .

I metioned autoimmunity . is your arthritis rhumatoid or oesto ? As rhumatoid arthritis is autoimmune . There is a discussion in the genral section about this . Any autoimmune disease means more compliment cascades ( 1-9 ) which acts as a magnifying glass on mast cell problems . So good control / treatment of any RA will have a positive impact on compliment activation and so the effects of that .

I hope this helps ;-)

Josie

Title: Re: New, with questions
Post by kirkmc on 03/28/11 at 01:17:04

The potassium is not very low - it's been as low as 3.4 or 3.5, and recently it was 3.7. But the nephrologist is slightly concerned since he can't figure out why I'm losing potassium through the kidneys.

Back in 2002, when this was discovered, I had dozens of tests to try and find out what was wrong, and, as I said above, was diagnosed as having Gitelman's syndrome. But that's not what I have. At the time, everything was tried - taking magnesium, taking potassium, but neither of them raised the potassium level. Interestingly, it was around this time that I found I had a vitamin D deficiency. When I started taking daily vitamin D supplements, the potassium went up. Recently, both my vit D and potassium were low, but the nephrologist I'm seeing now doesn't believe there is a link.

As for diarrhea/constipation, no, I don't take anything that would go either way. I do, however, eat a bowl of muesli every morning for breakfast, and have rarely been constipated, in part because of that (at least that's my opinion).

I have physical therapy for the muscles, and my general back pain. I have a mild scoliosis, along with arthritis (osteo) in several locations.

Dang, reading all this makes it sound like I'm falling apart. It's not that bad, really!

Title: Re: New, with questions
Post by Josie on 03/28/11 at 04:22:51

Hi Kirk ,

Excellent , You are correct it is low but not worryingly so . Your nephrologist will look at your pituatry as he/she will know they are connected .

Regards the vitamin D , I think ( my opinion ) that at sometime in the past your calcium level has been high due to your high bone density . The body has a feedback loop so when you don't need vitamin d to make calcium your body absorbs less . This comes from control of parathyroid hormones . So a look at their function may give your answer regards the low vitamin d , that doesn't go up with suplementation. essensially from your bodies point of view you have enough calcium right now . I assume by the fact you know your bone density is high you have had a bone scan . A repeat will be worth doing if your Vit d remains low to ensure the system is working ;-)

Is you urea high ? or low ?

Anyway enough of that . many of us here have had reactions to varying levels . from rashes and swelling to more worrying . I can see from the list that you have had some .I imagine you have a naughty list as I do . When i found this forum i found a place where other understood this in me and how it has affected me on all levels . I talk alot but actually its the stuff i say very little about which are my biggest concerns .

Anaphylaxis , in those truely allergic follow a pattern in the most part . In those of us with triggers not true allergy , our reactions can follow several different patterns . I have mine documented in a booklet and guide I take with me to ED and whenever I go out .

Reactions happen by several routes . Most doctors only understand IGE allergies . This is where you ahve something your body thinks is bad . You make antibodies to it and mark your immune system mast cells with the antibody . next time you meet it it couples with the antibodies and bursts mast cells dumping histamine and other chemicals into your system . This gives the reaction

These allergies can be tested for with skin and blood tests .

Mast cells can be activated and burst by many other routes . The next best understood is compliment . Compliment is a cascade of chemicals which are your inborn immunity . They are 1-9 with a sub group of 3a 4a and 5a which are termed anaphltoxins .

Compliment normally acts on harmful non self things . Its process brings about several effects .
mast cell bursting ( degraulation )
anaphltoxins :- smooth muscle contraction - bowel , stomach , lungs , uretogenitil system . porus blood vessels = swelling and secondery mast cell activation ( de granulation )

In infection , autoimmune disease and sometimes just because we have compliment jumping into action over harmless self cells .

Many other sources of mast cell activation exist . these are termed secretogouges . These are our triggers . Some are finding biological explination others haven't yet . Due to the nature of these triggers no 2 mast cell patients will ahve exactly the same problems . But we have things in common .

Deb , the forum lead did not like fizzy pop when she was young as it made her tummy hurt , when I read this I was like , yep , me too . Everyone thought I was wierd not liking a famous brand of brown fizzy drink , but it made my tummy hurt so that was that .

It can also change , one day your ok with something , the next day not ;-( baffling , but thats just sometimes how it is .

I am glad you are having physio ;-) we all feel like that ;-) its talking about it all .

Flushing does not necessary equal histamine release . There are 3 articles in the symptoms section on this .

I hope you are well today ;-)

Josie

Title: Re: New, with questions
Post by DeborahW, Founder on 03/28/11 at 05:12:50

Flushing can be caused by a variety of things. For most of us here, it us due to mast cell activation. However, there are actual conditions that also cause that. For example, I also have rosacea. That causes flushing, but I would say that when I flush, mine is from my mast cells degranulating. How can I tell? Once I started histamine blocker meds, my flushing diminished. If I trigger up mast cell wise, I will immediately flush. However, I will pop a zyrec or allegra and the flush will disappear within minutes. So, that tells me it is from mast cells in my case.

Josie mentioned a variety of allergy and anaphylactic types. That really won't concern you if you have mast cell disease, because the specialists look at it in more simple terms. You are either triggering or not. You are either going into anaphylaxis or not. If you are doing either of those, then you figure out what meds will stop a flare; what meds will prevent triggering, what food and lifetime changes you need to make, and what your particular triggers are.

We don't want to get overly complicated because it just doesn't apply here and the simple list I just made will get the job done and help one to get back to enjoying life. I am glad that you have found us, because there are many people here who can share their own experiences and give you suggestions. Years ago I was one of the sickest mast cell people around. Now I am probably one of the healthiest. It all revolves around educating yourself, finding the right specialist, and taking charge of your own destiny.

Title: Re: New, with questions
Post by DeborahW, Founder on 03/28/11 at 05:35:35

One other question I have for you is what antihistamine did you try that helped with the swelling? I bet that it only helped a bit because you didn't take the best choice or didn't take enough. Allegra and Zyrtec are the preferred meds over claritin. For example, I can take a Zyrtec AND an allegra at the same time if needed! (That is my doctor's instruction, not my guesswork.). I try to take minimal meds, but I am a shocker (anaphylactic),so I stay aware and act preventatively if I start any symptoms.

Those with mast cell disease are all different from each other. There is mastocytosis, which means having too many or mutated in shape mast cells. There is Idiopathic Anaphylaxis, which I have. That is where the mast cells are normal in shape and size, tryptase levels are normal, all tests are normal. Yet we suffer Masto symptoms, including shock. There is mast cell activation, which is similar ir IA but doesn't always mean shock, although it can. You see, there are all types and the meds which help are similar but not identical based on the individual. The key is figuring our if you have a mast cell disease. One thing you could ask your gp is to try you on daily preventative histamine blockers and see if that helps.

Title: Re: New, with questions
Post by kirkmc on 03/28/11 at 21:29:14

Thanks for the heads up on different antihistamines. I was first taking loratadine, which didn't do much, then rupadatdine, which does a bit more. I didn't know that certain antihistamines would be better.

For now, I've been taking the latter daily, because the symptoms, which initially were every few weeks, are more or less daily.

However, this week, I'm taking some different meds. I have a CT scan on Thursday (for my adrenal glands), and the protocol for anyone with allergies is to take antihistamines and cortisone for three days before the scan (because there will be an injection of an iodine-based contrast medium). So I'm taking desloratadine in the morning, and hydroxine in the evening, along with 3 x 5mg of prednisone.

After that, I'll go back to my GP and talk about trying different antihistamines.

One thing - you said that with the two meds you take, symptoms are relieved in minutes. My experience with the rupatadine, which is the one I've taken that works best, is that it takes an hour. Do the others really work that quickly? Are they not in tablet form?

As for anaphylxis - are there different degrees of this? In other words, would my swelling be considered anaphylaxis, or is that only when it gets more serious?

Title: Re: New, with questions
Post by DeborahW, Founder on 03/28/11 at 23:45:51

I'm not familiar with any of those meds actually. For mast cell disease, the most common meds prescribes by the Masto specialists are Zantac, allegra, Zyrtec, singular, hydroxyzine. Then we have more powerful ones that are actual mast cell stabilizers.

If you have mast cell disease, iodine bases tests are very dangerous.

I believe that we have different degrees of anaphylaxis. That is just my theory. However, I feel that all of symptoms are those different degrees and that if they increase enough, they result in full-blown anaphylaxis.

Lisa: can you offer up some advice here? Lisa is one of my moderators and the most knowledgeable person we have on the forum medically speaking about mast cell disease (except for Nancy Gould, who only drops by occasionally). So, I'd like to see what advice she offers here .

Title: Re: New, with questions
Post by Starflower on 03/29/11 at 00:29:19

Let me decode the medications kirkmc mentioned:

loratadine = Claritin
desloratadine = Clarinex (2nd generation Claritin)
"hydoxine" = hydroxyzine (Atarax, Vistaril)

rupadatdine is a new H1 antihistamine (it's also a PAF antagonist)... I would love to try it if it was available in the US!

So here's how I see the contrast situation...

Yes, iodine contrast is dangerous for people with mast cell disorders. If it was me, I would ask three questions:

- Is this scan absolutely necessary?
- Could it be done with a different kind of contrast solution?
- Do I feel protected from a life-threatening situation?

The pre-medications you're taking (H1 antihistamines plus 15mg of prednisone) are less than what I would take. Here's what Dr. Castells recommends on the TMS website:

- 50mg prednisone (once 24 hrs prior and once 1-2 hrs prior)
- 25-50mg Benadryl (or equivalent H1) 1 hr before the procedure
- 150mg Zantac (or equivalent H2) 1 hr before the procedure
- 10mg Singulair 1hr before the procedure

http://tmsforacure.org/documents/castells_emergencyplan.pdf

Going back for a second...

Iodine contrast is a known degranulator. Many people (even normal people) experience flushing, itching, dizziness, etc... Does that mean that everybody is in danger of a life-threatening reaction? Not really. Kirkmc: regardless of whether you have a mast cell disorder or not, you might sail through this procedure no problem. But... there's also the chance that this could be your first experience with anaphylaxis. It SUCKS. Even if it's not life-threatening, it feels really, really awful. Is the scan worth it? Only you and your doctor can decide. If you decide to go ahead, I would follow Dr. Castells instructions for pre-medication. It can't hurt.

Heather

Title: Re: New, with questions
Post by kirkmc on 03/29/11 at 00:43:19

Regarding the scan - I just sent an e-mail to the nephrologist who ordered it explaining the problem, and what I'm currently taking. When I saw him last, about 6 weeks ago, I mentioned the swelling issue, but at the time, it had only happened a couple of times. Since then, it's pretty much every day. With the pre-scan medications, my symptoms are much stronger today, so I asked if a) I should change them, and b) if it's really safe to do the scan with an iodine contrast agent. (I don't know if the scan is worth doing without the contrast agent.)

The reason for the scan is to look for an explanation to my low potassium problem. I'd say it's very useful to have, because after this he's going to give me high BP medication, and the choice of meds depends, in part, on whether anything shows up in the scan.

I've had CT scans with contrast in the past, and never had any reaction, other than feeling very warm. I would assume that being in a hospital environment, any negative reaction would be dealt with quickly and correctly (I assume they get this from time to time). Nevertheless, I can imagine that it wouldn't be a very enjoyable day...

One thing to point out: the protocol here is to take the meds I mentioned for three days before the scan, whereas you suggest just taking them on the day of the scan. I think the logic is that a three-day treatment probably protects more than a single day...?

Again, thanks for the info.

Title: Re: New, with questions
Post by Starflower on 03/29/11 at 01:15:41

It's not that I recommend pre-medicating within 24 hours of the exam... that's what Dr. Castells recommends. Is your doctor an expert in mast cell disorders? Dr. Castells is. Maybe the pre-medication you're taking is enough for someone with "allergies." Maybe not. I don't know since I'm not a medical doctor. All I know is that Dr. Castells (and other doctors like her such as Cem Akin, Luis Escribano, etc...) recommend that mast cell patients pre-medicate on a 24hr/1hr prior schedule like the chart I showed you. (Lisa can give you the REMA protocol from Dr. Escribano... it's very similar).

You're in a catch-22 since you don't know yet if you're a mast cell patient or not. All I know is that Dr. Castells' protocol is very unlikely to cause any harm... and it could definitely prevent your first episode of anaphylaxis. Very few people have life-threatening breakthrough symptoms on those doses. If I was having a scan tomorrow I would take them in addition to the antihistamines, Singulair, etc... that I'm already taking on a daily basis.

Anaphylaxis is nothing to fool around with. I hate to dwell on the "life-threatening" aspect of it, but truth be told... it can kill you. Only you can decide who you trust with your life.

Heather

Title: Re: New, with questions
Post by Starflower on 03/29/11 at 01:18:12

By the way... some of the most common BP medications are dangerous for mast cell patients, especially ACE inhibitors and beta blockers.

Heather

Title: Re: New, with questions
Post by DeborahW, Founder on 03/29/11 at 01:35:08

Ahh, so that explains those meds! Thanks Heather!

Of the meds you are taking, IF THIS IS MAST CELL DISEASE, only the hydroxyzine will have much effect. The other 2 simply aren't the preferred ones as they don't work nearly as well as the ones I listed. Hydroxyzine is a powerful one, though. I take that as my emergency med only, because it is more than I need on a daily basis and it knocks me out.

One thing to consider is this: with mast cell disease, it can often lie dormant in people for years. Then something triggers it to activate. The way that I look at it is that since there are different degrees of how sick we get with mast cell disease, we have to avoid things that could push us to a more severely sick level. Let's say that you do have mast cell disease. Right now you only have swelling (which seems worrisome from a safety viewpoint.) What if the iodine pushed you to a worse level and now you had other anaphylactix syptoms, such as hives, diarrhea, blood pressure drops, and organs affected? It is harder to get rid of the new symptoms on a permanent basis once they appear. So if you can keep them from appearing, that is to your advantage.

Now that is not to say that you cannot get rid of symptoms once they appear. Some people do. I have forced my symptoms back into hiding, but I do it through diligent avoidance of triggers and awareness of what those triggers are. Plus I take daily preventative meds and I totally changed my lifestyle to prevent symptoms. I don't have masto, though. I have Idiopathic Anaphylaxis, so in a way, perhaps mine is easier controlled. I don't really know. (Sometimes I feel IA is easier to have....only during an actual attack it is probably easier to be fatal! Yikes! So, you can see why I am so careful.)

Now, as to is Dr. Castell's protocal for pre-medicating better than your doc's or not? Well, there are only a handful of mast cell disease researchers/specialists in the WORLD. Dr. Castells is one of them. That means she knows the disease better than most people on the planet. If this is what she orders up, then you rest assured that it is the safest way to go. The best thing you could do is to request that your doctor email Dr. Castells and consult with her regarding your case and the best way to premedicate for a test using iodine. (I can give you her email if you would like it.)

Now, back to your original question: do you have mast cell disease? That is a hard one, as your only symptom is swelling. There are so many causes of swelling and usually mast cell people have more symptoms. However, this is a rare disease and it affects everyone differently, which is exactly the reason that anything is possible with it and you could turn out to have mast cell disease. It is tricky!

Title: Re: New, with questions
Post by kirkmc on 03/29/11 at 01:55:06

Sigh... If only life were simpler. I have to say, I have another rare condition (a cerebral vascular malformation, which has hemorrhaged several times), and I've been through this complex process of trying to process a whole lot of new information at once, and it's frustrating.

In any case, thanks again for all the info. I sent an email to the nephrologist who's ordered the CT scan, and, while I was out seeing my physical therapist, he called back and left a message, basically saying that it's not a good idea to do the scan under these conditions. (He asked me to call him back, but he was busy, so I'll get him on the phone later today.) So at least he does see that this is problematic right now. He did say that he could do an MRI instead, so we'll see about doing that. I've had several MRIs with gadolinium as a contrast agent, and that is not allergenic.

As for triggers, that's interesting. I'd had some mild swelling occasionally, but the first time this got "serious" was one Friday, after the person who cleans my house once a week had vacuumed in my office. Vacuum cleaners, of course (unless they have HEPA filters) spit out nearly as much dust as the suck in, and I recall smelling the dust strongly. During the day, I started feeling weirder and weirder, and in the evening, the swelling felt very strong. The same thing happened a month later, on a Friday, after my office had been cleaned. So perhaps the dust is a trigger? I did a blood test last week for dust-specific IGEs, and am waiting for the results.

In addition to the swelling, I do have some irritation of mucous membranes: generally the nose and mouth, but sometimes my eyes sting. This is almost exactly the same feeling I get from old books - I suspect that I'm allergic to "old book mold," and have an appointment with an allergy doctor in a couple of weeks to investigate that.

Thanks for the heads up about beta blockers and ACE inhibitors. I've taken beta blockers before to try and reduce essential tremor, but, while it worked, it made me too tired. (I am, unfortunately, very, very sensitive to medications, and need small doses of almost everything.) I'll mention the ACE inhibitor thing to the nephrologist.

Sigh...

Again, many thanks for all your help.

Title: Re: New, with questions
Post by DeborahW, Founder on 03/29/11 at 02:31:26

Happy to help, of course! One last piece of info to share: people with mast cell disease often have no or few allergies. Yet we react as if we are highly allergic. You are right in that the vacuum and any other cleaning agents could be a trigger. I have a cleaning lady and she knows not to use anything with odor and to make sure that I am not in the room when she uses any cleaning sprays, etc.

Title: Re: New, with questions
Post by kirkmc on 03/29/11 at 03:06:03

I have had allergies in the past, when I lived in a different area. (I currently live in the mountains, where the air is cleaner.) I am definitely allergic to old books - I discovered this last year when doing some research on a project. Having bought some old books - not very old, just a few decades - I started having severe reactions when reading them. I don't, however, know of any other allergies; I have no food allergies, for example.

Title: Re: New, with questions
Post by DeborahW, Founder on 03/29/11 at 03:32:48

Sounds like ebooks are the way to go for you! ;). I love my kindle!

Title: Re: New, with questions
Post by kirkmc on 03/29/11 at 03:39:57

Ebooks: yes and no. The problem is that these are out-of-print books, and there's no other way to get them. One was a 16-volume set of something, which I ordered from a reseller in a different country; I had to send it back, because I couldn't read it.

I'd planned to see an allergy doctor about that, before these symptoms came up that I have now, to see what I can do about it.

This said, a friend suggested scanning them and making my own ebooks. It's something I'll consider.

Personally, I'm an iPad guy myself. :-)

Title: Re: New, with questions
Post by DeborahW, Founder on 03/29/11 at 04:35:02

Oh yes, my husband loves his iPad as his ebook also! So, I am intrigued: you have mentioned that you are researching and use old books. I would love to know what you do and what type books you research. Is it literature or a different area? My doctorate work specialized in English Renaissance Lit, specifically Shakespeare. So, I just love to hear what other people are researching an writing about!

Title: Re: New, with questions
Post by kirkmc on 03/29/11 at 04:41:19

I'm a huge Shakespeare fan, but, no, that's not it. I'm currently researching Ralph Waldo Emerson and the Transcendentalists.

I'm a freelance writer, but I don't get paid for this stuff. I'm doing the research for a potential book - fiction or non-fiction, I haven't decided yet. I'm hoping that I can do writing that is less ephemeral than what I do for a living (writing about computers, digital music, etc.).

Title: Re: New, with questions
Post by Josie on 03/29/11 at 05:31:37

Hi Kirk ,

My brother is a poet and also has a large libuary . I can't go in there now . I do wander if other factors are involoved in the dust as that dust will carry other particles from the other home , cats , pollens , cleaning agents etc . An idea is to ask them to hoover off any dust before they post them . I know the pages may be very fragile so a cold blast from a hairdryer would do it . The covers should be able to be damp dusted .

I have written a a book about my experiences as I have been ill since 2008 . I did not get to specalist doctors quickly , so I am now disabled. Writing has been a really important thing for me in accepting my illness . I also still have daily symptoms as my med regiemn is tweaked . I am under the care of specalists now so I am doing better this spring . Pollen is a problem for me . In my reading I found that when you move area it takes a period of time to get reactive to new pollens . Up to 2 years . They can also be blown for 15 miles . If you have a mast cell disease ........... then it acts as a magnifying glass over allergens . Mine in test land and minor , but in reality I am very sensitive . Mine are dust , grass and cats . I can't be in the same room as the hoover ( with a hepa filter ) and as Deb described I can't have any fragrances . I found I was especially sensitive to vinegar based cleaners and alcohol based . I am down to 2 products from my local supermarket . But they work .

Do you swell any after bathing ?

Is the phase 2 claratyn available over the counter in france ?? As if heather likes it ill be over ( From England ) to get a suitcase full .

Regards the CT , I am very glad your nephrologist has made that descision . I had a reaction to CT contrast . It was horrid . I had anaphylaxis and 7 doses of adrenaline .This is because its half life ( how long it is active in your system is 24 hours . This was my 3rd CT with contrast . I will never have iodine based contrast again ;-). I have had 3 MRI's with no problems . 2 since I got ill No contrast . I know the contrast is felt to be NON allergenic . But I urge you to be cautious as most things I react to are NON allergenic !!!!!!!!!!!! But I react by the other pathways i described before . The pre medication protocol is not just for CT DYES but for any surgery or invasive procedure . It may not be necessary , but it won't harm you to be pre medicated ;-)

I am in the dark ages tech wise . I only just got wifi for the first time !!! So I have ebooks on my laptop .

I hope the meds are helping today ;-) I have just moved and its 5pm One of those days where resting is what I need to do ;-) I am having amazing results with hyroxizine . I am on 25mg twice a day now . Since last summer I have had singulair , ranitidine and hydroxizine added . Each works on a differnt symptom for me . Singulair on exteranal swelling and my chest , Ranitidine on my bowel spams and swelling and resultant flushing and frquency / diarrhoea . and hyroxizine on my brain fog and bladder spasms .

Josie

Title: Re: New, with questions
Post by kirkmc on 03/29/11 at 07:37:11

Re books and cleaning: this is all new (except for the books, which I first discovered last year). I never had any reactions to the few cleaning products used in our home.

I don't swell after bathing (showers). But I do swell a couple of hours after eating. Apparently, it's too late for it to be a food allergy, and I don't have food allergy symptoms (hives, diarrhea, etc.).

What's phase 2 claritin? FWIW, no allergy meds are over the counter in France; they all require a prescription. This said, they're all covered by our single-payer, state-run, socialist health care system. (Sorry, I had to throw that in. :-) )

Re the CT scan: the doctor will order an MRI. He said it's not quite as good as a CT for what he wants to see, but given my current symptoms, he doesn't want to risk the iodine.

Title: Re: New, with questions
Post by Joan on 03/29/11 at 08:21:39

Hi Kirk,

Your symptom list caught my eye, and there is much there that could suggest a mast cell disorder. As others have said, though, additional possibilities need to be ruled out.

I'm relieved that your doctor has changed your test, but I believe it might be wise to pre-medicate before an MRI with gadolinium. Also, make sure you are really hydrated before the test and drink a lot of fluids after it to help clear it quickly from your system. The reason I say to consider pre-medicating is that it may be rare that gadolinium causes mast cell degranulation, but you don't want to be the rare one that has a reaction. If you pre-medicate as Dr. Castells recommends, any reaction would be suppressed or much milder and gentler.

About 20% of masto patients also have true allergies (about the same as the general population). I happen to have both. Positive allergy tests will not rule a mast cell disorder in or out, but they'll give you more information. Still, they can show you some things to avoid that may be triggering you. Allergens, such as mold, dust, etc. can be triggers of mast cell disorder symptoms, as they can cause the mast cells to degranulate, but it's not always a true "allergy." Same with certain chemicals and perfumes/fragrances.

If you have allergy testing done, it might be wise to have the blood tests rather than the skin testing, since it's recommended to never go off your antihistamines for skin testing. Antihistamines can mask reactions in skin testing. I'm sure you know about exercise induced anaphylaxis. This can be related to mast cell disorders or not. Taking your antihistamines an hour before exercise can help.

One very important thing you can try that might relieve some symptoms is a low histamine diet. You can find it at this address:

www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

This diet removes foods which either contain high levels of histamine or which cause direct mast cell degranulation. These foods are very common triggers of symptoms in mast cell disorder patients (IA, MCAD, and SM) You must avoid everything on the list for a period of time before you will notice fewer symptoms, if high histamine is one of the culprits. I would say you should notice improvement within days to a couple of weeks at most. If I were you, I'd stay on that diet until you have a confirmed diagnosis of yea or nay on both allergies and mast cell disease.

The most common foods that people eliminate and notice a big health difference might be leftover foods and fish. If you want to save leftover food to use later, it must be frozen as soon as possible after cooking. As both leftovers and fish age, certain bacteria in them proliferate that produce high levels of histamine. Tuna is the worst fish for this, and it can produce toxic levels of histamine within half an hour of its death.

Diarrhea is a common symptom, but not everyone with a mast cell disorder has it. It can also be masked by diet or supplements, especially calcium, and it can vary in severity a lot week to week or day to day.

You mentioned high bone density. Is that still in the normal range?

One more FYI, I had tightness in my joints without visible heat or swelling. I believe it was part of the inflammatory reaction of masto in my case, as it rarely happens now since I'm on the correct antibiotics.

Intermittent cognitive impairments can occur from mast cell activity. We call it "brain fog," and it usually comes and goes, depending on the level of wellness we are having at the time and which meds we are taking. Well, good luck in figuring this out! It's a process....

Title: Re: New, with questions
Post by Riverwn on 03/31/11 at 07:12:47

Hi Kirk,
Joans advice is excellent. Kirk please listen to her about the diet. IF this is mast cell related, you wont start to get a handle on it until you delete those foods from your diet (you can test them later, adding one back at a time but you need to be stable first).

High bone density isnt a problem, its just a genetic marker, Low bone density---now THAT is a problem LOL

Hugs,
Ramona

Title: Re: New, with questions
Post by kirkmc on 03/31/11 at 22:06:43

A brief update.

I had upped the dosage of rupatadine that I was taking to two a day. It made me a bit tired, but did a better job of reducing my symptoms. I saw my GP this morning, and I mentioned the two meds that had been recommended here, so gave me a script for cetirizen (Zyrtec). I have an appointment with an allergy doctor in two weeks, so we're going to wait and see what he says, or if he's familiar with mast cell disorders.

This morning, to see what happened, I decided to not take the rupatadine. What a mistake; I felt like crap, as if I got a sudden flu.

BTW, how do you define the "brain fog" that has been mentioned? I get a couple of cognitive symptoms, and I'm wondering if it's the same thing.

Title: Re: New, with questions
Post by Josie on 03/31/11 at 23:15:20

Hi Kirk ,

Brain fog , the doctors call it mixed organic brain syndrome , for me is a mix of being unable to concentrate , poor memory - forget what prog I am watching in the ad break , irritability from minor to shouting for no reason . I have a paper on it by one of the Masto specialists et al . I will pm you my email address . I have some other bits that may be of interest .

In my experience allergy doctors can be very open to the concept of mast cell activation by means other than allergy , the typical route to anaphylaxis I mentioned , or be completely blinkered to the possibility . They will ahve the ability to work you up for allergies . You do not need to come off your antihistamines for testing and more importantly you shouldn't as it could be dangerous for you . I understand why you tested your meds . Now you know you need them . I have been here . In my early days of this i wandered if I needed them and i did as you have done , and found out I did .

They may want to stop antihistamines BUT they can do blood tests , on them with no affect on the results . They are called RAST,s , for a large number of allergens . These and patch testing only test for allergys . The chemical they are looking for is immunoglobulin E . This is the marker which attaches to mast cells to wait for the next encounter with the substance . So you may trigger by another route and/ or you may have allergys . As Joan said 20% of ppl have an allergy . But having one does not rule out mastocyctosis .

I have both , swelling ( angiodeama ) and allergies .

You can also come out negative to foods you react to on contact or eating . An oral challenge is possible of any food but should only be done in controled conditions .

The fact you felt so grotty without you antihistamines shows they are working and histamine is involved in your illness . There may still be the other things i mentioned in my first post as those release histamine amoungst these other hormones .

In the next 2 weeks it will be really useful for you to keep a diary of all foods and products you use and all symptoms with timings . As it may show connections you are not seeing currently . I sussed many of my triggers this way .

I hope you are having a good day ;-)

Josie

Title: Re: New, with questions
Post by Lisa on 04/01/11 at 05:10:20

Hi Kirk, good question!

Brain fog is a real symptom of masto and it's basically an incapacity to think clearly. When the mediators get intense, they interfere with the neurological system and this is why we will find ourselves suddenly being unable to think straight. Sometimes it's mild, other's it can be so strong that you sit there wondering what hit you and even what is wrong. Just to try to form a sentence can be extremely difficult and I've come to the place of realizing that if I have to say to myself "WHAT IS WRONG" this this right here is the warning sign that the Brain fog has hit and I'm about to lose it!! I have literally sat on my couch saying to myself, What is wrong? What do I do? What is wrong? and not being able to answer it!! I would equivilate it to almost like diabetic patients who are about to go into a seizure!! I have diabetic friends and they are billingual as I am. When they both (father and daughter) have their sugar getting way too low, they can't speak or understand orders in Portuguese and they find it easier to function in English, their native tongue! They've found themselves doing things that they can't figure out how or why they did it. Masto brain fog doesn't get to this point, thank God, but it gets close! Although I'm still able to reason in Portuguese, it's such hard work that I prefer not to! If I'm asked a question, I'll not be able to find the words to answer it and get this kind of strained look on my face as I'm struggling just to concentrate! Yet, I"ve trained myself that if I find that I'm asking myself as to "what is wrong" then this is the warning sign that I'm about to explode into activity and that I must hit in with the antihistamines or I'm in trouble!!! I find that when this is happening, it seems like I move and do everything in slow motion and that my body responds that way as well.

So, this is what brain fog is. Thankfully it appears to be temporary!!

Lisa

Title: Re: New, with questions
Post by kirkmc on 04/01/11 at 05:29:18

So it turns out that I had a severe allergic reaction today. Interestingly, the most serious episodes I have had have been on Fridays, the day a cleaning person cleans our house.

So I was working, and I had taken an antihistamine late morning. It worked for a few hours, but around 3pm, I started feeling symptoms in my mouth and nose. I was tired, so I went downstairs to lie down in bed. After about 15 minutes, I started having some trouble breathing. It got worse, to the point that I was almost gasping for breath. I went to my doctor's, and he said that, first, it was not an anaphylactic reaction - my BP was high. Second, I mentioned that there's a cleaning product that the person uses on the tiles on the ground floor, and that I could smell it more than usual. The fact that this has happened on days when the house was cleaned suggests that it's related.

So when we came home, we opened all the windows (fortunately, it's the warmest day of the year), and my wife washed the floor with plain water. After I had been away for a while, the symptoms reduced, but when we came back in the house, I could feel them increasing immediately. I've been outside for a while; while I have some symptoms, it's much less than earlier. The sun will go down soon, so we'll have to close the windows, but I'm pretty much convinced that this is some kind of systemic allergic reaction to a cleaning product.

I'll know more over time. We're not going to use this again, and we're going to open windows as much as possible. I see an allergy doctor in 2 weeks. We'll see.

As my doctor said this afternoon, I hope it's an allergy to a cleaning product; the alternative is not very nice.

Title: Re: New, with questions
Post by Lisa on 04/01/11 at 05:50:17

Kirk, I'm sorry to tell you this but your doctor does NOT understand mast cells and most certainly does not know mastocytosis. Anaphylaxis can indeed happen with hypertension for there is a rare hypertensive variant form of masto. My pressure has gone up to 220/110 with contrast injection!! All of my crises have hypertension during them but there are other times when the mediator release is not so acute and I will have my pressure go down as far as 60/40!!!! I've also got POTs which is called and Orthostatic condition and my pressure has been seen by my angiologist as high as 230/110 just because I was standing waiting in her office. This is a well enough known situation for anyone who knows mast cells. But not every doctor knows about this and my masto specialist learned about this with me!! She didn't know either and she's a specialist in masto!! There's a lot to learn about this disease!!!

I have information as to Orthostatic Hypertension and I also have other information as to the hypertensive form. If you PM me with your email, I'll be glad to forward this information on to you so that you can give it to your doctor.

Lisa

Title: Re: New, with questions
Post by Lisa on 04/01/11 at 05:52:28

Oh, and yes, it sounds like you are reacting to the perfumes in the cleaning products or the products themselves.

A question for you, have you written to Dr. Hermine or to Dr. Escribano asking for their help yet? I would recommend this to you for although you have the public health system, you may find that getting a referral long and difficult. It would be better to write to either one of these doctors to see what they could do for you.

Lisa

Title: Re: New, with questions
Post by Josie on 04/01/11 at 06:08:45

Hi Kirk ,

I am glad you are ok . I am worried for you though .

Your doctor is falling into a classic problem , that he doesn't beleive in serious reactions without low blood pressure . It is possible , you may have had a low and your body compensated with high pressure . This is a common occurance. It is known as compensated shock .

Abut half my serious reactions have had high blood pressure when it was measured .

I think In the current moment you need to keep yourself well dosed up on antihistamines . I also think your current presciptions are not sufficient to prevent these reactions . Mine wasn't until very recently . Seeing your GP is not wanting to prescribe any more , You can purchese a number of antihistamines over the counter .

you have benadryl -
and
Hydroxizine - 25 mg twice a day is working for me

ranitidine is avilable here OTC - in 75mg tablets . Most of us here are on 150mg twice a day or 300mg twice a day . In your situation I think 300mg twice a day would be good .

You can buy chlorpheramine mealate - Piriton - liquid bendryl or this can be used for emergencies .

I am not saying any of this to concern you . BUT you need to keep yourself safe . Please trust your body and seek help if you need it ;-)

If you can email the company who make the cleaning products you can identify these ingredients as avoids ;-)

I know you want this to be an allergy and for now it may be . Do I recollect you saying your GP's existing allergy tests came out negative ? I know a mast cell problem feels like the worst thing . With the right doctors to work with , they can offer the tools to help you be safe .

What symptoms did you feel in your mouth and nose ?? With inhalants , like cleaning materials , I tingle / swell in my mouth , my nose blocks and is unbearably itchy . I suspect removing yourself from the trigger helped a great deal . Did your doctor listen to your chest or anything like that ?? could you talk to him through your breathing .

I hope your breathing has settled ;-) I completely understand the can't breathe moment .

Josie

Title: Re: New, with questions
Post by kirkmc on 04/01/11 at 21:26:26

Thanks. What I'm trying to figure out now is this: the swelling is one thing, and that suggests a possible mast cell problem. But what happened yesterday did not involve any swelling; it was more like an asthma attack (I'm guessing slightly, having only seen one person have an asthma attack once). I had trouble breathing not because my throat was swollen, but because of something affecting my lungs. How does this fit in with mast cell disorders?

I do understand that there could be an underlying disorder, and a reaction to something - in this case a cleaning product - could set off some kind of attack. But the next step is to know whether it's simply this product that has been causing my previous problems, or whether it's a trigger.

Again, thanks to all of you for your help.

Title: Re: New, with questions
Post by DeborahW, Founder on 04/02/11 at 00:56:19

Kirk,

We all have different symptoms with mast cell disease, and those symptoms can change from one attack to another. For example, I never have swelling and rarely have breathing problems. Yet, I go into fullblown anaphylaxis that no ER recognizes due to my lack of classic symptoms. My typical symptoms are (in this order): flushing, diarrhea, feeling hot, sense of doom, severe body tremors, brain fog, passing out due to blood pressure plummeting. SOMETIMES, however, my symptoms will go straight to tongue tingling, then diarrhea and passing out. Or I might go straight to chest feeling tight, as if someone is pressing on it. I don't have swelling problems then, just that feeling. For me, this symptoms is the most dangerous because I get no warning and I know that what will follow will be passing out if I don't get histamine blockers right away. With all of these symptoms I can take an extra allegra or zyrtec and even a singulair if needed, and then the symptoms will stop within 10 minutes of taking the meds.

So, yes, your symptoms could be mast cell related!

Josie and Lisa are both completely correct in their advice. The only think I would want more info on is that Josie suggested Benedryl as one of the daily meds, and I know on this forum that there have been discussions as to the reasons that this is not a good idea for daily longterm use. I don't remember the discussion, but I am sure that someone who does can jump in and mention it here.

Title: Re: New, with questions
Post by DeborahW, Founder on 04/02/11 at 00:57:49

I forgot to mention that when I first got sick (like you), my doctor just kept insisting I had the flu and just to ignore it. After numerous ER trips, I never returned to that doctor!

Title: Re: New, with questions
Post by Josie on 04/02/11 at 01:09:56

Hi Kirk ,

I am relieved that your throat wasn't swollen ;-) mast cells and the chemicals produced , histamine and others , can definately cause bronco ( lung tube ) constriction ( narrowing ) . It can also cause swelling of the airway tubes further reducing the middle space which air moves through ( lumen ) The difficulty in breathing comes from trying to breathe past the restriction.

This is a serious symptom . I suspect that away from the cleaning products it improved even by the time you got to the GP . ;-)

I am pleased you are seeing an allergist . I just wanted to share my experience with you .

In your response i sense you trust your doctor and that is good IF they know what they are doing in very specalist areas . My GP also has another mast cell patient . It helps me as he understands how hard it is to control and the doses of antihistamines required to produce stability . When I first met him , October , he told me he had been guided by the local immunologist to give double the standard dose . BUT even though he knows this he does not make decisions about my symptoms . His line is , if I am feeling ill , call an ambulance . In the meantime we are seeking opinion as you are .

I had a reaction , which sounds very similar to yours yesterday in oct 07 . I had no chest infection , but a VERY tight chest , made worse with inhaling bath foam vapor , where you could hear me coming with the wheeze . This was before I got consistently poorly . I was put on salbutamol 4 puffs 6 times a day and a steriod inhaler . The salbutamol is to relieve the tightness ( broncoconstriction ) and the steriods reduce any swelling . It is best taken long term as it works well and helps prevent and/ or reduces the severity of swelling in a reactive situation .

This is a medium inhalant reaction for me . So I completely understand ;-)

I am now on symbicort 200/6 . Which contains along acting version of salbutamol and steriods .I have 2 puffs twice a day . In a situation like you were yesterday. I have 4puffs straight away or 6 if I am progressing.

I am now on montelukast ( singulair ) 10mg ( up to twice a day at the mo ) , which was developed for little ones with asthma , which is not controlled with inhalers . It works on blocking the activity of leucotrines , which a re involved in airway restriction form both sources .

I am in the same situation as deb , but I do get serious airway compromise . I do itch , flush , swell ( not always ) , wheeze , heart rate up , dizzy , very wheezy , throat close . I can do no early symptoms and be dizzy wheezy and throat close in 3 minutes . Or itch for half hour , then get worse . Or itch , stop and hours later do more serious symptoms .

I / we / you don't know which direction this is going to go . A good site for reference for what is a serious symptom the EPI PEN website is very informative . Looking there and the mastocytosis website will give you a source of confirmation of the advice we are giving .

Your GP is not alone in having his view , he is just not aware of the many varients of mastocytosis . I have paper by the top specalists , which may be useful for you to read . The vids on you tube , mast cell activation symptomology are also good .

So all you can do to control your symptoms is very important. I spent a period of time not knowing why these things were happening to me .

I hope you are feeling better today ;-)

Josie xxxx

Title: Re: New, with questions
Post by kirkmc on 04/02/11 at 01:20:43

Thanks, I am feeling better. It did start improving when I left the house, but the doctor's office is just a few minutes away, so it took a bit. By the time I left, though, I wasn't gasping any more. Once I came home, I felt it right away.

The weather is lovely here in the mountains: it's probably around the mid-20s (celsius), and we had lunch outside for the first time this year. All the windows have been open since the sun came up over the mountains, and when I came back from the hotel, while I could feel a bit of constriction in my breathing, it's ok now. I did feel irritation in my nose, eyes and mouth, though, and am continuing with extra doses of antihistamines (it doesn't seem that doubling or tripling the standard dosage has any risk, other than some drowsiness).

I'm probably going to see my GP again next week, just to update him on what has happened. I didn't ask yesterday about an inhaler, but I think I'll ask if this is something I should have in case I have such symptoms again.

Title: Re: New, with questions
Post by Josie on 04/02/11 at 01:35:21

Hi Kirk ;-)

If you find yourself in that situation again , get your wife to video you on your mobile as many of us experience similar problems .

My sister had the very same with my niece 2 weeks ago . It seems she may be our next generation . My mum had symptoms more mild than me but perfumes and cleaning products have bothered her for many yrs .

A check of you peak flow would be useful . Its a hand head machine , with a tube you breathe into , which measures your exhaled lung volume . This will get your current level .It may be back to normal or slightly below . It will also give you reference if you have to measure it when restricted again .

I am pleased it is so lovely and you are able to have lunch outdoors ;-) xxx

Josie

Title: Re: New, with questions
Post by DeborahW, Founder on 04/02/11 at 01:35:55

One thing that I will share with you: while it is very necessary to be aware of your symptoms (especially in the early days of your investigation to figuring out what is wrong with you) it is easy to get so focused on how we feel that we actually can trigger ourselves into feeling poorly. For example, if I talk too long about my symptoms, I will actually start to feel sick! I do best by staying aware but not focuing on my symptoms 24/7. Now I am in the good position of not needing to investigate my condition as you need to. I already have done all that. At this point, it is second nature for me to avoid my triggers without needing to consciously focus on them all the time. I realize that I am lucky to be at that point, and it took me 10 whole years of being really sick and undiagnosed with no meds! However, it is a fact that STRESS and anxiety (worrying) will trigger our symptoms. So, be careful, be aware, but don't get obsessed with how you feel every second. You will know if you are going along in your day and suddenly something feels wrong. You might not want to go seeking your symptoms though in at attempt to see if they are triggering or feeling normal.

Title: Re: New, with questions
Post by Josie on 04/02/11 at 02:03:36

Hi Deb ,

I agree . I live and deal with symptoms as they happen . It can be easy to go over that line from looking after yourself and being self aware to it being everything you are .

To discover my triggers I used a dairy and just documented without trying to "work stuff out " . I then reviewed it every month . If I reacted I text messaged myself my symptoms , as a record as when the doctors asked me what had happened I couldn't remember . This is because my brain fog would take over .

I transferred these messages with foods , drinks , everything relevant. Over a period of a year i sussed many triggers this way . Things like gelatin took a while to emerge as I reacted to it in various forms . These were Epi pen or near miss level reactions .

I also discovered my corn flour problem from the diary and cleaning products ;-)

My advice about peak flow , is based on gold standard care for asthma , regardless of trigger . ;-) Established asthma is a known risk for serious anaphylactic reactions . Its on the TMS emergency plan ;-)

Many hugs

Jose