URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

[Guest guest]

Hi Group, I have pondered a lot about this subject recently and have hesitated as to how to really put all this information into words without appearing like someone saying "because my daughter has it everyone must have it." But as everyone searches for relief and answers I can't help but to jump in and again review symptoms of mastocytosis and hopefully if you can identify with some of these you may have another avenue to look down.

As all of you that know Alena and I, you know it has been two years of hell. It has been two years of fighting and crying and begging to get the bottom of what was wrong with my little girl. And bear in mind, she was tested for mastocytosis three times and all three times had different answers. Once a biopsy negative for urticaria pigmentosa (a form of mastocytosis) but a dermatologist wanting to diagnose her anyway. (that doctor turned out to say some things that didn't make sense so I got rid of her quick) then she had another set of biopsies and one pathologist read them as positive and one read them as negative and the dermatologist was on the fence. Then we moved to Ohio and started the circle all over again, this time armed with information the biopsies were done a third time, however, I halted the pathology department from staining them "their" way and doing them under the advice of a prominent mast cell researcher Dr. Schwartz. Whammo there were those nasty little mast cells. The other two sets of biopsies had been stained wrong from the beginning. So not to make this email too lengthy please discuss mastocytosis if you can relate to any of the following:

CUTANEOUS MANIFESTATIONS

PHYSICAL URTICARIAS~LIKE COLD, ETC

DERMOGRAPHISM

FLUSHING~ESPECIALLY "DRY" FLUSHING(NO SWEATING INVOLVED)

PRURITIS~ITCHING

MAST-CELL MEDIATOR-RELATED

GASTROINTESTIONAL COMPLAINTS

PALPITATIONS/TACHYCARDIA

LIGHTHEADEDNESS, DIZZINESS, SYNSCOPE

ANAPHYLAXIS

RESPIRATORY SYMPTOMS

ALTERED COGNITIVE FUNCTIONS (ie~POOR ATTENTION, IRRITABILITY, IMPAIRED MEMORY PERSONALITY CHANGE)

PEPTIC ULCER DISEASE, GASTRITISI, DUODENITIS, MALABSORPTION

ORGAN INFILTRATION

HEPATOMEGALY

SPLENOMEGALY

SKELETAL LESIONS

ARTHRAIGLAS

BONE-MARROW INFILTRATION

LYMPHADENOPATHY

CONSTITUTIONAL SYMPTOMS

WEAKNESS

FATIGUE

MALAISE

FEVER

WEIGHT LOSS

I also encourage to watch your "spots" if you hive and get brown spots be very aware! If you are bruising, do your brown spots go through the yellow green phase or are you left with a fawny colored spot? Or do you have several mole looking spots? TMEP people have squashed spidery looking spots. One of the biggest problems I have run across in the mastocytosis literature is that they spots they describe are either one or the other and don't really explain the vast differences in them. Some people have one spot others have hundreds. I know a woman who only gets spots when she is having a very bad spell. One thing everyone does agree on is that every mastocytosis patient is different, there are not any two alike. The symptoms I am listing are just a set of the "norm" however, there are several others. There are other medicines available to mastocytosis sufferers that patients have found to be wonderful with serious side effects like Gastrocrom. Doesn't make you sleepy and it stabilizes the mast cells. It can also be made into a very wonderful cream that soothes the skin.

There is also a link between miscarriages and mast cells. Hair loss and mast cells. I mean the list goes on and on. These mast cells wreck havoc when there are too many and help heal our wounds when there are just the right amount. I have information and pictures I would be glad to share if anyone wants them, just email me directly.

Ok enough ~ Love, ~Alena's Mom who reminds you to watch your spots )

[Guest guest]

Only a few people know this (until now, LOL), but because of 's

questions to the group a while back about the physical appearance of hives,

spots, etc., I started looking closer at my own symptoms and the possibility

of mastocytosis. You see, I realized I was answering 'yes' to too many of

her questions. I've read a ton of stuff online, asked and Myra some

questions (and they have both been wonderfully helpful, thank you so much,

ladies), and have been lurking on the masto board, learning everything I

can. It's amazing how difficult it is to admit 'out loud' that I may have

masto - I guess saying it makes it more real... besides, the cause of my

hives was supposed to be something simple, like my teeth... not this. But

the more I see and read, the more convinced I am that the possibility is

very real in my own case. Because money is extremely tight right now, and we

don't have insurance, I don't know when I will be able to get testing done,

but I fully intend to as soon as I can.

What really got me was the bruise thing. Every time I hive, I later have a

few spots where there are bruises. I always thought they were normal

bruises, probably caused during unconscious scratching and rubbing, but

those brown spots don't go through the color change a normal bruise does.

And they sometimes last for weeks, fading away very slowly, and always

staying brownish. Never bothered pointing them out to a doctor, because I

thought I was causing them. I don't heal well - a small scratch can last for

weeks. And I always scar terribly. I have osteoporosis, which I have always

blamed on prednisone - I'm sure it added to it, but now I wonder if it is

solely to blame (I believe mast cells in the bone marrow can also cause

osteoporosis - is that correct, ?). My teeth break for no good reason

- just had another one go this past weekend - seems to also be a problem for

some masto patients, and is also a sign of osteoporosis. I've been through a

ton of testing for gastrointestinal problems: Within an hour or two of

eating, I have to literally run to the bathroom, " get the hell outta my way,

I gotta go NOW. " I always have reflux, some days the GERD is extremely bad,

and it can be so painful - yet no reason has been discovered. I've been told

by doctors they assume I have hives throughout the digestive tract (well,

doc, we both know what 'assume' means). Diet doesn't seem to make much

difference, just the act of eating seems to do it (which I've noticed some

masto patients have said as well). My bones and joints hurt all the time, to

some extent - some days I can barely get around, it gets so bad; I did test

positive for rheumatoid factor, but who knows if that is the only reason. I

have asthma, which translates into breathing problems. I cannot tolerate the

heat, get very weak and light headed from it, have a hard time cooling down

if I get too hot, and have progressed into shock just from getting too hot

(and I'm talking heat levels that don't bother 'normal' people). I have

multiple forms of physical urticarias - DPU, dermographia, and cholinergic.

I am a shocker (anaphylaxis). These can ALL be symptoms of masto. And

masto's about the only thing I have NOT been tested for, amazingly. I agree

1000% with , if you share any of these symptoms, especially any

bruises or other marks during or after your hives, get it checked out.

Insist on a skin biopsy to check for urticaria pigmentosa, and make sure it

is done properly.

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

,

I was tested for mastocytosis and it was negative - or was it. I have no

lesions or brown/bruise spots at all. I have dermographism and lately have

had some asthma like symptoms. My summer was rather mild and now that the

fall is kicking in, I am starting with hiving again. I am still on the

allegra 180 twice a day but have added back the 10mg of singular and it

seems to be working.

I do have the masto test results and they weren't very conclusive. Yes

there were mast cells but not in unusual numbers. Since you have been

through this with Alena: what do they biopsy (regular skin, a hive), what is

the correct stain and how does one reach Dr. Schwartz?

I had to unsubscribe for a while during the summer because I lost my access

to the net at work. My husband finally relented (I made him crazy) and

bought a computer. Yesssss. The last message I read from you was the visit

to the pediatrician with a shopping cart of files and papers gathered to

make your case. What happened?

in Pa.

>

>Reply-To: urticaria

>To: " UrticariaEgroups (DOT) Com " <urticaria >

>Subject: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

>Date: Wed, 3 Oct 2001 15:48:55 -0400

>

>Hi Group, I have pondered a lot about this subject recently and have

>hesitated as to how to really put all this information into words without

>appearing like someone saying " because my daughter has it everyone must

>have it. " But as everyone searches for relief and answers I can't help but

>to jump in and again review symptoms of mastocytosis and hopefully if you

>can identify with some of these you may have another avenue to look down.

>

>As all of you that know Alena and I, you know it has been two years of

>hell. It has been two years of fighting and crying and begging to get the

>bottom of what was wrong with my little girl. And bear in mind, she was

>tested for mastocytosis three times and all three times had different

>answers. Once a biopsy negative for urticaria pigmentosa (a form of

>mastocytosis) but a dermatologist wanting to diagnose her anyway. (that

>doctor turned out to say some things that didn't make sense so I got rid of

>her quick) then she had another set of biopsies and one pathologist read

>them as positive and one read them as negative and the dermatologist was on

>the fence. Then we moved to Ohio and started the circle all over again,

>this time armed with information the biopsies were done a third time,

>however, I halted the pathology department from staining them " their " way

>and doing them under the advice of a prominent mast cell researcher Dr.

>Schwartz. Whammo there were those nasty little mast cells. The other two

>sets of biopsies had been stained wrong from the beginning. So not to make

>this email too lengthy please discuss mastocytosis if you can relate to any

>of the following:

>CUTANEOUS MANIFESTATIONS

>PHYSICAL URTICARIAS~LIKE COLD, ETC

>DERMOGRAPHISM

>FLUSHING~ESPECIALLY " DRY " FLUSHING(NO SWEATING INVOLVED)

>PRURITIS~ITCHING

>

>MAST-CELL MEDIATOR-RELATED

>GASTROINTESTIONAL COMPLAINTS

>PALPITATIONS/TACHYCARDIA

>LIGHTHEADEDNESS, DIZZINESS, SYNSCOPE

>ANAPHYLAXIS

>RESPIRATORY SYMPTOMS

>ALTERED COGNITIVE FUNCTIONS (ie~POOR ATTENTION, IRRITABILITY, IMPAIRED

>MEMORY PERSONALITY CHANGE)

>PEPTIC ULCER DISEASE, GASTRITISI, DUODENITIS, MALABSORPTION

>

>ORGAN INFILTRATION

>HEPATOMEGALY

>SPLENOMEGALY

>SKELETAL LESIONS

>ARTHRAIGLAS

>BONE-MARROW INFILTRATION

>LYMPHADENOPATHY

>

>CONSTITUTIONAL SYMPTOMS

>WEAKNESS

>FATIGUE

>MALAISE

>FEVER

>WEIGHT LOSS

>

>I also encourage to watch your " spots " if you hive and get brown spots be

>very aware! If you are bruising, do your brown spots go through the yellow

>green phase or are you left with a fawny colored spot? Or do you have

>several mole looking spots? TMEP people have squashed spidery looking

>spots. One of the biggest problems I have run across in the mastocytosis

>literature is that they spots they describe are either one or the other and

>don't really explain the vast differences in them. Some people have one

>spot others have hundreds. I know a woman who only gets spots when she is

>having a very bad spell. One thing everyone does agree on is that every

>mastocytosis patient is different, there are not any two alike. The

>symptoms I am listing are just a set of the " norm " however, there are

>several others. There are other medicines available to mastocytosis

>sufferers that patients have found to be wonderful with serious side

>effects like Gastrocrom. Doesn't make you sleepy and it stabilizes the

>mast cells. It can also be made into a very wonderful cream that soothes

>the skin.

>

>There is also a link between miscarriages and mast cells. Hair loss and

>mast cells. I mean the list goes on and on. These mast cells wreck havoc

>when there are too many and help heal our wounds when there are just the

>right amount. I have information and pictures I would be glad to share if

>anyone wants them, just email me directly.

>

>Ok enough ~ Love, ~Alena's Mom who reminds you to watch your spots

>)

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Jackie you already know how proud I am of you and how very brave I think you

are. And yes you are right about the osteoporosis. My limited

understanding is that with the increase of mast cells there is an increase

with heparin in your blood which then wrecks havoc on your bones.

Believe me even admitting now that Alena has it is so hard for me to

swallow. I had to face that no wonder antibiotic was going to rid her body

of this mess and I also have to admit it is going to be a very big part of

our lives from now on. And 50% odds are great that she could outgrow this

but given the fact we are fairly certain that my sister in law died from the

luekemia form it is a real concern.

However, it does give it a name and does rule out other things, like lupus

and such. And it just gives you another wonderful family to join because

the mastocytosis society is a group of beautiful people working hard for a

cure. Maybe while searching for a cure for Mastocytosis they may stumble on

something that will help CU'rs. That is why I am actively trying to get my

state senators to commit to supporting the Rare Disease Act, which will

provide additional funding to NIH who is doing some tremendously wonderful

research now.

And I will never doubt that life's got nothin' on you Jackie, You are tough!

Love,

Re: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

> Only a few people know this (until now, LOL), but because of 's

> questions to the group a while back about the physical appearance of

hives,

> spots, etc., I started looking closer at my own symptoms and the

possibility

> of mastocytosis. You see, I realized I was answering 'yes' to too many of

> her questions. I've read a ton of stuff online, asked and Myra some

> questions (and they have both been wonderfully helpful, thank you so much,

> ladies), and have been lurking on the masto board, learning everything I

> can. It's amazing how difficult it is to admit 'out loud' that I may have

> masto - I guess saying it makes it more real... besides, the cause of my

> hives was supposed to be something simple, like my teeth... not this. But

> the more I see and read, the more convinced I am that the possibility is

> very real in my own case. Because money is extremely tight right now, and

we

> don't have insurance, I don't know when I will be able to get testing

done,

> but I fully intend to as soon as I can.

> What really got me was the bruise thing. Every time I hive, I later have a

> few spots where there are bruises. I always thought they were normal

> bruises, probably caused during unconscious scratching and rubbing, but

> those brown spots don't go through the color change a normal bruise does.

> And they sometimes last for weeks, fading away very slowly, and always

> staying brownish. Never bothered pointing them out to a doctor, because I

> thought I was causing them. I don't heal well - a small scratch can last

for

> weeks. And I always scar terribly. I have osteoporosis, which I have

always

> blamed on prednisone - I'm sure it added to it, but now I wonder if it is

> solely to blame (I believe mast cells in the bone marrow can also cause

> osteoporosis - is that correct, ?). My teeth break for no good

reason

> - just had another one go this past weekend - seems to also be a problem

for

> some masto patients, and is also a sign of osteoporosis. I've been through

a

> ton of testing for gastrointestinal problems: Within an hour or two of

> eating, I have to literally run to the bathroom, " get the hell outta my

way,

> I gotta go NOW. " I always have reflux, some days the GERD is extremely

bad,

> and it can be so painful - yet no reason has been discovered. I've been

told

> by doctors they assume I have hives throughout the digestive tract (well,

> doc, we both know what 'assume' means). Diet doesn't seem to make much

> difference, just the act of eating seems to do it (which I've noticed some

> masto patients have said as well). My bones and joints hurt all the time,

to

> some extent - some days I can barely get around, it gets so bad; I did

test

> positive for rheumatoid factor, but who knows if that is the only reason.

I

> have asthma, which translates into breathing problems. I cannot tolerate

the

> heat, get very weak and light headed from it, have a hard time cooling

down

> if I get too hot, and have progressed into shock just from getting too hot

> (and I'm talking heat levels that don't bother 'normal' people). I have

> multiple forms of physical urticarias - DPU, dermographia, and

cholinergic.

> I am a shocker (anaphylaxis). These can ALL be symptoms of masto. And

> masto's about the only thing I have NOT been tested for, amazingly. I

agree

> 1000% with , if you share any of these symptoms, especially any

> bruises or other marks during or after your hives, get it checked out.

> Insist on a skin biopsy to check for urticaria pigmentosa, and make sure

it

> is done properly.

>

> Air hugs,

> Jackie

>

> Life is tough, but I'm tougher.

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

,

>>>And 50% odds are great that she could outgrow this but given the fact we

>>>are fairly certain that my sister in law died from the

luekemia form it is a real concern.<<<

As you know, my heart goes out to you and your family. Uncertainties like

this are hard to face, but I know you will get through it. You are also a

very strong lady! And, you know you have all of us in your corner to help

you through this. Any time, we're here.

A question: Do you know how common it is for multiple members of the same

family to have masto? From what I've been reading, I get the impression it

is not real common, but has been known to happen. My brother, as I believe

I've mentioned, has leukemia and also suffers from hives. I phoned him a few

weeks back and told him to get another evaluation done, and to have them

look specifically for masto. If I know him, I'll have to fly up there and

personally escort him to the doctor, though. Such is life...

I also have not found any info on whether or not masto is an autoimmune

disorder. Things I have read seem to suggest it is, and I would think it is,

but not certain. Any idea?

Big hug,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi , I hate to answer you this way but nope you probably were not

" really " tested for masto. However, all is not lost. If you can get the

block of the biopsy (the uncut, undyed portion) I could help you make

arrangements for Dr. Schwartz to look at them. The lab would have to follow

specific instructions from Dr. Schwartz.

Lawrence B Schwartz, MD PhD

Virginia Commonwealth University,

1112 East Clay Street

McGuire Hall - Room 4-114

Richmond, VA 23298-0263

Phone: 804 828-9685 fax: 804 828-0283

I have got to tell you, this guy knows his stuff. There is also a blood

test, which honestly I think if you even think you might have masto would

very much be worth you looking into. It tests specifically for systemic

masto (another form of masto) brown markings or red mole looking things or

squashed spider marks would be indicative of cutaneous form of masto called

urticaria pigmentosa (pigmented hives) or TMEP (the squashed spider looking

ones) Anyway back to the testing for systemic mastocytosis there is a blood

test called

alpha protryptase it is also done by Dr. Schwartz's lab and he is the only

doctor that can do this. It is a $60 test and the test can be done when you

are on your meds (gotta love those kinds of tests) it can be drawn by your

local lab and flash frozen and sent. If you want information on this let me

know. I had to fight very hard for Alena's doctors to run this one.

As for the rest of Alena's story~I found some great pictures on the net of

these brown/fawny marks. Alena has them on her legs, I always thought they

were toddler bumps and bruises, my middle daughter has them and my oldest

daughter bruises easily and the fact that the hives would always bring them

on, I didn't think a thing of them except maybe deep tissue damage from the

hives. Well, needless to say they were masto spots. Her doctor finally was

convinced I wasn't crazy, he didn't yet believe she had masto but soon

would when her biopsy was taken, things were not sitting well with me, so I

contacted the pathology lab directly and made them be in constant contact

with Dr. Schwartz and he sent them a protocol to follow and used a special

stain called " anti tryptase specific " the toludine blue and giemsa stain

will NOT pick up the mast cells that have already degranulated and those

must be counted as well. The allergist was pleased that the

biopsy/pathology report confirmed what he thought she should be diagnosed

with. He is a gem to say the least. Dr. Schwartz confirmed her diagnosis

with a block of an old skin biopsy and he is also currently rereading the

ones done at the Cleveland Clinic.

When I called her pediatrican to tell him of her diagnosis he did not bother

to apologize for tellling me to " give up " on her and " let it go " and she

would only be diagnosed with CIU. He will never lay another finger on my

little girl again, they have a wonderful nurse practioner that will handle

Alena's care from here on out, along with Dr. Melton (allergist) at the

Cleveland clinic of course.

If you need anymore information you know where to find me (knee deep in

homework that is hee hee)

Love, ~Alena's Mom

To: <urticaria >

Sent: Wednesday, October 03, 2001 8:54 PM

Subject: Re: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

> ,

>

> I was tested for mastocytosis and it was negative - or was it. I have no

> lesions or brown/bruise spots at all. I have dermographism and lately have

> had some asthma like symptoms. My summer was rather mild and now that

the

> fall is kicking in, I am starting with hiving again. I am still on the

> allegra 180 twice a day but have added back the 10mg of singular and it

> seems to be working.

>

> I do have the masto test results and they weren't very conclusive. Yes

> there were mast cells but not in unusual numbers. Since you have been

> through this with Alena: what do they biopsy (regular skin, a hive), what

is

> the correct stain and how does one reach Dr. Schwartz?

>

> I had to unsubscribe for a while during the summer because I lost my

access

> to the net at work. My husband finally relented (I made him crazy) and

> bought a computer. Yesssss. The last message I read from you was the

visit

> to the pediatrician with a shopping cart of files and papers gathered to

> make your case. What happened?

>

> in Pa.

>

>

> >

> >Reply-To: urticaria

> >To: " UrticariaEgroups (DOT) Com " <urticaria >

> >Subject: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

> >Date: Wed, 3 Oct 2001 15:48:55 -0400

> >

> >Hi Group, I have pondered a lot about this subject recently and have

> >hesitated as to how to really put all this information into words without

> >appearing like someone saying " because my daughter has it everyone must

> >have it. " But as everyone searches for relief and answers I can't help

but

> >to jump in and again review symptoms of mastocytosis and hopefully if you

> >can identify with some of these you may have another avenue to look down.

> >

> >As all of you that know Alena and I, you know it has been two years of

> >hell. It has been two years of fighting and crying and begging to get

the

> >bottom of what was wrong with my little girl. And bear in mind, she was

> >tested for mastocytosis three times and all three times had different

> >answers. Once a biopsy negative for urticaria pigmentosa (a form of

> >mastocytosis) but a dermatologist wanting to diagnose her anyway. (that

> >doctor turned out to say some things that didn't make sense so I got rid

of

> >her quick) then she had another set of biopsies and one pathologist read

> >them as positive and one read them as negative and the dermatologist was

on

> >the fence. Then we moved to Ohio and started the circle all over again,

> >this time armed with information the biopsies were done a third time,

> >however, I halted the pathology department from staining them " their " way

> >and doing them under the advice of a prominent mast cell researcher Dr.

> >Schwartz. Whammo there were those nasty little mast cells. The other

two

> >sets of biopsies had been stained wrong from the beginning. So not to

make

> >this email too lengthy please discuss mastocytosis if you can relate to

any

> >of the following:

> >CUTANEOUS MANIFESTATIONS

> >PHYSICAL URTICARIAS~LIKE COLD, ETC

> >DERMOGRAPHISM

> >FLUSHING~ESPECIALLY " DRY " FLUSHING(NO SWEATING INVOLVED)

> >PRURITIS~ITCHING

> >

> >MAST-CELL MEDIATOR-RELATED

> >GASTROINTESTIONAL COMPLAINTS

> >PALPITATIONS/TACHYCARDIA

> >LIGHTHEADEDNESS, DIZZINESS, SYNSCOPE

> >ANAPHYLAXIS

> >RESPIRATORY SYMPTOMS

> >ALTERED COGNITIVE FUNCTIONS (ie~POOR ATTENTION, IRRITABILITY, IMPAIRED

> >MEMORY PERSONALITY CHANGE)

> >PEPTIC ULCER DISEASE, GASTRITISI, DUODENITIS, MALABSORPTION

> >

> >ORGAN INFILTRATION

> >HEPATOMEGALY

> >SPLENOMEGALY

> >SKELETAL LESIONS

> >ARTHRAIGLAS

> >BONE-MARROW INFILTRATION

> >LYMPHADENOPATHY

> >

> >CONSTITUTIONAL SYMPTOMS

> >WEAKNESS

> >FATIGUE

> >MALAISE

> >FEVER

> >WEIGHT LOSS

> >

> >I also encourage to watch your " spots " if you hive and get brown spots be

> >very aware! If you are bruising, do your brown spots go through the

yellow

> >green phase or are you left with a fawny colored spot? Or do you have

> >several mole looking spots? TMEP people have squashed spidery looking

> >spots. One of the biggest problems I have run across in the mastocytosis

> >literature is that they spots they describe are either one or the other

and

> >don't really explain the vast differences in them. Some people have one

> >spot others have hundreds. I know a woman who only gets spots when she

is

> >having a very bad spell. One thing everyone does agree on is that every

> >mastocytosis patient is different, there are not any two alike. The

> >symptoms I am listing are just a set of the " norm " however, there are

> >several others. There are other medicines available to mastocytosis

> >sufferers that patients have found to be wonderful with serious side

> >effects like Gastrocrom. Doesn't make you sleepy and it stabilizes the

> >mast cells. It can also be made into a very wonderful cream that soothes

> >the skin.

> >

> >There is also a link between miscarriages and mast cells. Hair loss and

> >mast cells. I mean the list goes on and on. These mast cells wreck

havoc

> >when there are too many and help heal our wounds when there are just the

> >right amount. I have information and pictures I would be glad to share

if

> >anyone wants them, just email me directly.

> >

> >Ok enough ~ Love, ~Alena's Mom who reminds you to watch your spots

> >)

> >

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

There is no written evidence of a familial connection however, I am not

convinced, I know there is a man whose mother and grandmother both had masto

as he does. Also there is a family with three children that have masto. I

know a mother right now being tested for it and her son has it. I think

honestly there is not enough research on this question, however, I do

believe someday there will be when the undiagnosed cases come to be

diagnosed. The problem I see is that if NIH has $500,000 to use for

research in grants, I doubt they will spend it on genetic type links as

opposed to getting new drugs approved and new testing methods approved.

I am not sure how sick your brother is but I believe that if they have the

masto type of leukemia it is a very rapidly progressing disease.

As far as Masto being an autoimmune disorder, I will ask a dear friend and

get back to you.

Love, ~Alena's Mom

Re: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

> ,

>

> >>>And 50% odds are great that she could outgrow this but given the fact

we

> >>>are fairly certain that my sister in law died from the

> luekemia form it is a real concern.<<<

>

> As you know, my heart goes out to you and your family. Uncertainties like

> this are hard to face, but I know you will get through it. You are also a

> very strong lady! And, you know you have all of us in your corner to help

> you through this. Any time, we're here.

>

> A question: Do you know how common it is for multiple members of the same

> family to have masto? From what I've been reading, I get the impression it

> is not real common, but has been known to happen. My brother, as I believe

> I've mentioned, has leukemia and also suffers from hives. I phoned him a

few

> weeks back and told him to get another evaluation done, and to have them

> look specifically for masto. If I know him, I'll have to fly up there and

> personally escort him to the doctor, though. Such is life...

>

> I also have not found any info on whether or not masto is an autoimmune

> disorder. Things I have read seem to suggest it is, and I would think it

is,

> but not certain. Any idea?

>

> Big hug,

> Jackie

>

> Life is tough, but I'm tougher.

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

,

When they take the biopsy, is it from one of these brown spots? I have no

brown spots, just welts which come and go. When the GP took the plug of

skin, I suggested he take a piece from my forearm where the hives appear.

As I said in a previous e-mail to Jackie, the endo doctor suggested a test

for masto and a bunch of other things to rule them out. I have my Lupus

results and I want to re-type them in an e-mail for Myra to look at.

I recently saw my allergist again, during a visit for my son. He was more

interested in my saga than my son's asthma which is under control. I may go

back to him and ask for this test. He is the only one willing to try new

things. He openly admits, he is stumped by my hives, but he is willing to

listen and is constantly giving me names of other doctor's to see. My

husband wants me to look for a world famous specialist in urticaria - as if

any existed. I have Dr. Volcheck (sp?) in mind based on what Terry has been

saying. Distance is no object to me - I crazy (nothing to do with the urt),

I'll go anywhere.

Back again to my original question, do they need a plug of skin from a brown

spot (former hive)?

in Pa.

>

>Reply-To: urticaria

>To: <urticaria >

>Subject: Re: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

>Date: Wed, 3 Oct 2001 19:11:53 -0400

>

>Hi , I hate to answer you this way but nope you probably were not

> " really " tested for masto. However, all is not lost. If you can get the

>block of the biopsy (the uncut, undyed portion) I could help you make

>arrangements for Dr. Schwartz to look at them. The lab would have to

>follow

>specific instructions from Dr. Schwartz.

>

>Lawrence B Schwartz, MD PhD

> Virginia Commonwealth University,

> 1112 East Clay Street

> McGuire Hall - Room 4-114

> Richmond, VA 23298-0263

>

>Phone: 804 828-9685 fax: 804 828-0283

>

>I have got to tell you, this guy knows his stuff. There is also a blood

>test, which honestly I think if you even think you might have masto would

>very much be worth you looking into. It tests specifically for systemic

>masto (another form of masto) brown markings or red mole looking things or

>squashed spider marks would be indicative of cutaneous form of masto called

>urticaria pigmentosa (pigmented hives) or TMEP (the squashed spider looking

>ones) Anyway back to the testing for systemic mastocytosis there is a

>blood

>test called

>alpha protryptase it is also done by Dr. Schwartz's lab and he is the only

>doctor that can do this. It is a $60 test and the test can be done when

>you

>are on your meds (gotta love those kinds of tests) it can be drawn by your

>local lab and flash frozen and sent. If you want information on this let

>me

>know. I had to fight very hard for Alena's doctors to run this one.

>

>As for the rest of Alena's story~I found some great pictures on the net of

>these brown/fawny marks. Alena has them on her legs, I always thought they

>were toddler bumps and bruises, my middle daughter has them and my oldest

>daughter bruises easily and the fact that the hives would always bring them

>on, I didn't think a thing of them except maybe deep tissue damage from the

>hives. Well, needless to say they were masto spots. Her doctor finally

>was

> convinced I wasn't crazy, he didn't yet believe she had masto but soon

>would when her biopsy was taken, things were not sitting well with me, so I

>contacted the pathology lab directly and made them be in constant contact

>with Dr. Schwartz and he sent them a protocol to follow and used a special

>stain called " anti tryptase specific " the toludine blue and giemsa stain

>will NOT pick up the mast cells that have already degranulated and those

>must be counted as well. The allergist was pleased that the

>biopsy/pathology report confirmed what he thought she should be diagnosed

>with. He is a gem to say the least. Dr. Schwartz confirmed her diagnosis

>with a block of an old skin biopsy and he is also currently rereading the

>ones done at the Cleveland Clinic.

>

>When I called her pediatrican to tell him of her diagnosis he did not

>bother

>to apologize for tellling me to " give up " on her and " let it go " and she

>would only be diagnosed with CIU. He will never lay another finger on my

>little girl again, they have a wonderful nurse practioner that will handle

>Alena's care from here on out, along with Dr. Melton (allergist) at the

>Cleveland clinic of course.

>

>If you need anymore information you know where to find me (knee deep in

>homework that is hee hee)

>

>Love, ~Alena's Mom

>

>To: <urticaria >

>Sent: Wednesday, October 03, 2001 8:54 PM

>Subject: Re: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

>

>

> > ,

> >

> > I was tested for mastocytosis and it was negative - or was it. I have

>no

> > lesions or brown/bruise spots at all. I have dermographism and lately

>have

> > had some asthma like symptoms. My summer was rather mild and now that

>the

> > fall is kicking in, I am starting with hiving again. I am still on the

> > allegra 180 twice a day but have added back the 10mg of singular and it

> > seems to be working.

> >

> > I do have the masto test results and they weren't very conclusive. Yes

> > there were mast cells but not in unusual numbers. Since you have been

> > through this with Alena: what do they biopsy (regular skin, a hive),

>what

>is

> > the correct stain and how does one reach Dr. Schwartz?

> >

> > I had to unsubscribe for a while during the summer because I lost my

>access

> > to the net at work. My husband finally relented (I made him crazy) and

> > bought a computer. Yesssss. The last message I read from you was the

>visit

> > to the pediatrician with a shopping cart of files and papers gathered to

> > make your case. What happened?

> >

> > in Pa.

> >

> >

> > >

> > >Reply-To: urticaria

> > >To: " UrticariaEgroups (DOT) Com " <urticaria >

> > >Subject: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

> > >Date: Wed, 3 Oct 2001 15:48:55 -0400

> > >

> > >Hi Group, I have pondered a lot about this subject recently and have

> > >hesitated as to how to really put all this information into words

>without

> > >appearing like someone saying " because my daughter has it everyone must

> > >have it. " But as everyone searches for relief and answers I can't help

>but

> > >to jump in and again review symptoms of mastocytosis and hopefully if

>you

> > >can identify with some of these you may have another avenue to look

>down.

> > >

> > >As all of you that know Alena and I, you know it has been two years of

> > >hell. It has been two years of fighting and crying and begging to get

>the

> > >bottom of what was wrong with my little girl. And bear in mind, she

>was

> > >tested for mastocytosis three times and all three times had different

> > >answers. Once a biopsy negative for urticaria pigmentosa (a form of

> > >mastocytosis) but a dermatologist wanting to diagnose her anyway. (that

> > >doctor turned out to say some things that didn't make sense so I got

>rid

>of

> > >her quick) then she had another set of biopsies and one pathologist

>read

> > >them as positive and one read them as negative and the dermatologist

>was

>on

> > >the fence. Then we moved to Ohio and started the circle all over again,

> > >this time armed with information the biopsies were done a third time,

> > >however, I halted the pathology department from staining them " their "

>way

> > >and doing them under the advice of a prominent mast cell researcher Dr.

> > >Schwartz. Whammo there were those nasty little mast cells. The other

>two

> > >sets of biopsies had been stained wrong from the beginning. So not to

>make

> > >this email too lengthy please discuss mastocytosis if you can relate to

>any

> > >of the following:

> > >CUTANEOUS MANIFESTATIONS

> > >PHYSICAL URTICARIAS~LIKE COLD, ETC

> > >DERMOGRAPHISM

> > >FLUSHING~ESPECIALLY " DRY " FLUSHING(NO SWEATING INVOLVED)

> > >PRURITIS~ITCHING

> > >

> > >MAST-CELL MEDIATOR-RELATED

> > >GASTROINTESTIONAL COMPLAINTS

> > >PALPITATIONS/TACHYCARDIA

> > >LIGHTHEADEDNESS, DIZZINESS, SYNSCOPE

> > >ANAPHYLAXIS

> > >RESPIRATORY SYMPTOMS

> > >ALTERED COGNITIVE FUNCTIONS (ie~POOR ATTENTION, IRRITABILITY, IMPAIRED

> > >MEMORY PERSONALITY CHANGE)

> > >PEPTIC ULCER DISEASE, GASTRITISI, DUODENITIS, MALABSORPTION

> > >

> > >ORGAN INFILTRATION

> > >HEPATOMEGALY

> > >SPLENOMEGALY

> > >SKELETAL LESIONS

> > >ARTHRAIGLAS

> > >BONE-MARROW INFILTRATION

> > >LYMPHADENOPATHY

> > >

> > >CONSTITUTIONAL SYMPTOMS

> > >WEAKNESS

> > >FATIGUE

> > >MALAISE

> > >FEVER

> > >WEIGHT LOSS

> > >

> > >I also encourage to watch your " spots " if you hive and get brown spots

>be

> > >very aware! If you are bruising, do your brown spots go through the

>yellow

> > >green phase or are you left with a fawny colored spot? Or do you have

> > >several mole looking spots? TMEP people have squashed spidery looking

> > >spots. One of the biggest problems I have run across in the

>mastocytosis

> > >literature is that they spots they describe are either one or the other

>and

> > >don't really explain the vast differences in them. Some people have

>one

> > >spot others have hundreds. I know a woman who only gets spots when she

>is

> > >having a very bad spell. One thing everyone does agree on is that

>every

> > >mastocytosis patient is different, there are not any two alike. The

> > >symptoms I am listing are just a set of the " norm " however, there are

> > >several others. There are other medicines available to mastocytosis

> > >sufferers that patients have found to be wonderful with serious side

> > >effects like Gastrocrom. Doesn't make you sleepy and it stabilizes the

> > >mast cells. It can also be made into a very wonderful cream that

>soothes

> > >the skin.

> > >

> > >There is also a link between miscarriages and mast cells. Hair loss

>and

> > >mast cells. I mean the list goes on and on. These mast cells wreck

>havoc

> > >when there are too many and help heal our wounds when there are just

>the

> > >right amount. I have information and pictures I would be glad to share

>if

> > >anyone wants them, just email me directly.

> > >

> > >Ok enough ~ Love, ~Alena's Mom who reminds you to watch your

>spots

> > >)

> > >

> >

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at

>http://explorer.msn.com/intl.asp

> >

> >

> >

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > If you do wish to unsubscribe then you can click on the following link:

> > urticaria-unsubscribeegroups

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> >

> > This list is in the service of those who suffer from Chronic Urticaria

>(hives). We strive to support and lift each other as a worldwide

>cyber-family.

> >

> > We share whatever needs to be shared to help one another in our struggle

>with Chronic Urticria. Information provided in this forum is not to be

>taken

>as medical advice. Always consult your health professional before trying

>anything new.

> >

> > Any posting that is off the main topic of Chronic Urticaria, we post

>with

>a prefix of NCU -. This is done out of respect for those who do not wish

>to

>read such postings.

> >

> >

[Guest guest]

, I would say YES, however, the last biopsy they did on Alena was NOT

from a brown spot (which had me very upset) HOWEVER if stained correctly

those nasty little mast cells should show up. One VERY IMPORTANT thing as

Myra pointed out is a skilled pathologist. And I say it from the top of my

lungs~PATHOLOGY PATHOLOGY PATHOLOGY. There is a good chance the plug

you had taken is pieced in a block that another slice could be taken of and

sent to Dr. Schwartz's lab and have him stain it. I hope this helps. Love,

~Alena's Mom ps I do have an article on how the biopsy should be done

I could snail mail to you if needed.

URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

> > > >Date: Wed, 3 Oct 2001 15:48:55 -0400

> > > >

> > > >Hi Group, I have pondered a lot about this subject recently and have

> > > >hesitated as to how to really put all this information into words

> >without

> > > >appearing like someone saying " because my daughter has it everyone

must

> > > >have it. " But as everyone searches for relief and answers I can't

help

> >but

> > > >to jump in and again review symptoms of mastocytosis and hopefully if

> >you

> > > >can identify with some of these you may have another avenue to look

> >down.

> > > >

> > > >As all of you that know Alena and I, you know it has been two years

of

> > > >hell. It has been two years of fighting and crying and begging to

get

> >the

> > > >bottom of what was wrong with my little girl. And bear in mind, she

> >was

> > > >tested for mastocytosis three times and all three times had different

> > > >answers. Once a biopsy negative for urticaria pigmentosa (a form of

> > > >mastocytosis) but a dermatologist wanting to diagnose her anyway.

(that

> > > >doctor turned out to say some things that didn't make sense so I got

> >rid

> >of

> > > >her quick) then she had another set of biopsies and one pathologist

> >read

> > > >them as positive and one read them as negative and the dermatologist

> >was

> >on

> > > >the fence. Then we moved to Ohio and started the circle all over

again,

> > > >this time armed with information the biopsies were done a third time,

> > > >however, I halted the pathology department from staining them " their "

> >way

> > > >and doing them under the advice of a prominent mast cell researcher

Dr.

> > > >Schwartz. Whammo there were those nasty little mast cells. The

other

> >two

> > > >sets of biopsies had been stained wrong from the beginning. So not

to

> >make

> > > >this email too lengthy please discuss mastocytosis if you can relate

to

> >any

> > > >of the following:

> > > >CUTANEOUS MANIFESTATIONS

> > > >PHYSICAL URTICARIAS~LIKE COLD, ETC

> > > >DERMOGRAPHISM

> > > >FLUSHING~ESPECIALLY " DRY " FLUSHING(NO SWEATING INVOLVED)

> > > >PRURITIS~ITCHING

> > > >

> > > >MAST-CELL MEDIATOR-RELATED

> > > >GASTROINTESTIONAL COMPLAINTS

> > > >PALPITATIONS/TACHYCARDIA

> > > >LIGHTHEADEDNESS, DIZZINESS, SYNSCOPE

> > > >ANAPHYLAXIS

> > > >RESPIRATORY SYMPTOMS

> > > >ALTERED COGNITIVE FUNCTIONS (ie~POOR ATTENTION, IRRITABILITY,

IMPAIRED

> > > >MEMORY PERSONALITY CHANGE)

> > > >PEPTIC ULCER DISEASE, GASTRITISI, DUODENITIS, MALABSORPTION

> > > >

> > > >ORGAN INFILTRATION

> > > >HEPATOMEGALY

> > > >SPLENOMEGALY

> > > >SKELETAL LESIONS

> > > >ARTHRAIGLAS

> > > >BONE-MARROW INFILTRATION

> > > >LYMPHADENOPATHY

> > > >

> > > >CONSTITUTIONAL SYMPTOMS

> > > >WEAKNESS

> > > >FATIGUE

> > > >MALAISE

> > > >FEVER

> > > >WEIGHT LOSS

> > > >

> > > >I also encourage to watch your " spots " if you hive and get brown

spots

> >be

> > > >very aware! If you are bruising, do your brown spots go through the

> >yellow

> > > >green phase or are you left with a fawny colored spot? Or do you

have

> > > >several mole looking spots? TMEP people have squashed spidery looking

> > > >spots. One of the biggest problems I have run across in the

> >mastocytosis

> > > >literature is that they spots they describe are either one or the

other

> >and

> > > >don't really explain the vast differences in them. Some people have

> >one

> > > >spot others have hundreds. I know a woman who only gets spots when

she

> >is

> > > >having a very bad spell. One thing everyone does agree on is that

> >every

> > > >mastocytosis patient is different, there are not any two alike. The

> > > >symptoms I am listing are just a set of the " norm " however, there are

> > > >several others. There are other medicines available to mastocytosis

> > > >sufferers that patients have found to be wonderful with serious side

> > > >effects like Gastrocrom. Doesn't make you sleepy and it stabilizes

the

> > > >mast cells. It can also be made into a very wonderful cream that

> >soothes

> > > >the skin.

> > > >

> > > >There is also a link between miscarriages and mast cells. Hair loss

> >and

> > > >mast cells. I mean the list goes on and on. These mast cells wreck

> >havoc

> > > >when there are too many and help heal our wounds when there are just

> >the

> > > >right amount. I have information and pictures I would be glad to

share

> >if

> > > >anyone wants them, just email me directly.

> > > >

> > > >Ok enough ~ Love, ~Alena's Mom who reminds you to watch your

> >spots

> > > >)

> > > >

> > >

> > >

> > > _________________________________________________________________

> > > Get your FREE download of MSN Explorer at

> >http://explorer.msn.com/intl.asp

> > >

> > >

> > >

> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > If you do wish to unsubscribe then you can click on the following

link:

> > > urticaria-unsubscribeegroups

> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > >

> > > This list is in the service of those who suffer from Chronic Urticaria

> >(hives). We strive to support and lift each other as a worldwide

> >cyber-family.

> > >

> > > We share whatever needs to be shared to help one another in our

struggle

> >with Chronic Urticria. Information provided in this forum is not to be

> >taken

> >as medical advice. Always consult your health professional before trying

> >anything new.

> > >

> > > Any posting that is off the main topic of Chronic Urticaria, we post

> >with

> >a prefix of NCU -. This is done out of respect for those who do not wish

> >to

> >read such postings.

> > >

> > >

[Guest guest]

,

Who knows where that plug of skin went! Do send the article and I will take

it to my old allergist (not the specialist who thinks he knows too much).

>

>Reply-To: urticaria

>To: <urticaria >

>Subject: Re: URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

>Date: Thu, 4 Oct 2001 15:04:51 -0400

>

>, I would say YES, however, the last biopsy they did on Alena was NOT

>from a brown spot (which had me very upset) HOWEVER if stained correctly

>those nasty little mast cells should show up. One VERY IMPORTANT thing as

>Myra pointed out is a skilled pathologist. And I say it from the top of

>my

>lungs~PATHOLOGY PATHOLOGY PATHOLOGY. There is a good chance the plug

>you had taken is pieced in a block that another slice could be taken of and

>sent to Dr. Schwartz's lab and have him stain it. I hope this helps.

>Love,

>~Alena's Mom ps I do have an article on how the biopsy should be done

>I could snail mail to you if needed.

> URTICARIA IS A SYMPTOM OF MASTOCYTOSIS

> > > > >Date: Wed, 3 Oct 2001 15:48:55 -0400

> > > > >

> > > > >Hi Group, I have pondered a lot about this subject recently and

>have

> > > > >hesitated as to how to really put all this information into words

> > >without

> > > > >appearing like someone saying " because my daughter has it everyone

>must

> > > > >have it. " But as everyone searches for relief and answers I can't

>help

> > >but

> > > > >to jump in and again review symptoms of mastocytosis and hopefully

>if

> > >you

> > > > >can identify with some of these you may have another avenue to look

> > >down.

> > > > >

> > > > >As all of you that know Alena and I, you know it has been two years

>of

> > > > >hell. It has been two years of fighting and crying and begging to

>get

> > >the

> > > > >bottom of what was wrong with my little girl. And bear in mind,

>she

> > >was

> > > > >tested for mastocytosis three times and all three times had

>different

> > > > >answers. Once a biopsy negative for urticaria pigmentosa (a form

>of

> > > > >mastocytosis) but a dermatologist wanting to diagnose her anyway.

>(that

> > > > >doctor turned out to say some things that didn't make sense so I

>got

> > >rid

> > >of

> > > > >her quick) then she had another set of biopsies and one pathologist

> > >read

> > > > >them as positive and one read them as negative and the

>dermatologist

> > >was

> > >on

> > > > >the fence. Then we moved to Ohio and started the circle all over

>again,

> > > > >this time armed with information the biopsies were done a third

>time,

> > > > >however, I halted the pathology department from staining them

> " their "

> > >way

> > > > >and doing them under the advice of a prominent mast cell researcher

>Dr.

> > > > >Schwartz. Whammo there were those nasty little mast cells. The

>other

> > >two

> > > > >sets of biopsies had been stained wrong from the beginning. So not

>to

> > >make

> > > > >this email too lengthy please discuss mastocytosis if you can

>relate

>to

> > >any

> > > > >of the following:

> > > > >CUTANEOUS MANIFESTATIONS

> > > > >PHYSICAL URTICARIAS~LIKE COLD, ETC

> > > > >DERMOGRAPHISM

> > > > >FLUSHING~ESPECIALLY " DRY " FLUSHING(NO SWEATING INVOLVED)

> > > > >PRURITIS~ITCHING

> > > > >

> > > > >MAST-CELL MEDIATOR-RELATED

> > > > >GASTROINTESTIONAL COMPLAINTS

> > > > >PALPITATIONS/TACHYCARDIA

> > > > >LIGHTHEADEDNESS, DIZZINESS, SYNSCOPE

> > > > >ANAPHYLAXIS

> > > > >RESPIRATORY SYMPTOMS

> > > > >ALTERED COGNITIVE FUNCTIONS (ie~POOR ATTENTION, IRRITABILITY,

>IMPAIRED

> > > > >MEMORY PERSONALITY CHANGE)

> > > > >PEPTIC ULCER DISEASE, GASTRITISI, DUODENITIS, MALABSORPTION

> > > > >

> > > > >ORGAN INFILTRATION

> > > > >HEPATOMEGALY

> > > > >SPLENOMEGALY

> > > > >SKELETAL LESIONS

> > > > >ARTHRAIGLAS

> > > > >BONE-MARROW INFILTRATION

> > > > >LYMPHADENOPATHY

> > > > >

> > > > >CONSTITUTIONAL SYMPTOMS

> > > > >WEAKNESS

> > > > >FATIGUE

> > > > >MALAISE

> > > > >FEVER

> > > > >WEIGHT LOSS

> > > > >

> > > > >I also encourage to watch your " spots " if you hive and get brown

>spots

> > >be

> > > > >very aware! If you are bruising, do your brown spots go through the

> > >yellow

> > > > >green phase or are you left with a fawny colored spot? Or do you

>have

> > > > >several mole looking spots? TMEP people have squashed spidery

>looking

> > > > >spots. One of the biggest problems I have run across in the

> > >mastocytosis

> > > > >literature is that they spots they describe are either one or the

>other

> > >and

> > > > >don't really explain the vast differences in them. Some people

>have

> > >one

> > > > >spot others have hundreds. I know a woman who only gets spots when

>she

> > >is

> > > > >having a very bad spell. One thing everyone does agree on is that

> > >every

> > > > >mastocytosis patient is different, there are not any two alike.

>The

> > > > >symptoms I am listing are just a set of the " norm " however, there

>are

> > > > >several others. There are other medicines available to

>mastocytosis

> > > > >sufferers that patients have found to be wonderful with serious

>side

> > > > >effects like Gastrocrom. Doesn't make you sleepy and it stabilizes

>the

> > > > >mast cells. It can also be made into a very wonderful cream that

> > >soothes

> > > > >the skin.

> > > > >

> > > > >There is also a link between miscarriages and mast cells. Hair

>loss

> > >and

> > > > >mast cells. I mean the list goes on and on. These mast cells

>wreck

> > >havoc

> > > > >when there are too many and help heal our wounds when there are

>just

> > >the

> > > > >right amount. I have information and pictures I would be glad to

>share

> > >if

> > > > >anyone wants them, just email me directly.

> > > > >

> > > > >Ok enough ~ Love, ~Alena's Mom who reminds you to watch your

> > >spots

> > > > >)

> > > > >

> > > >

> > > >

> > > > _________________________________________________________________

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> > >http://explorer.msn.com/intl.asp

> > > >

> > > >

> > > >

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> > > > This list is in the service of those who suffer from Chronic

>Urticaria

> > >(hives). We strive to support and lift each other as a worldwide

> > >cyber-family.

> > > >

> > > > We share whatever needs to be shared to help one another in our

>struggle

> > >with Chronic Urticria. Information provided in this forum is not to be

> > >taken

> > >as medical advice. Always consult your health professional before

>trying

> > >anything new.

> > > >

> > > > Any posting that is off the main topic of Chronic Urticaria, we post

> > >with

> > >a prefix of NCU -. This is done out of respect for those who do not

>wish

> > >to

> > >read such postings.

> > > >

> > > >