- masto

[Guest guest]

,

Excuse me for butting in here, but why were you tested for masto in the

first place? (hypothetical question, no need to answer if you don't care to)

In other words, obviously someone along the line thought there was a

possibility that you may have masto, otherwise why would you have been

tested for it. And if that test was done incorrectly, you may have been

given an incorrect dx. In which case, you may want to have further testing

done, by someone you know is qualified, like Dr. Schwartz.

Just my thoughts...

Air hugs,

Jackie

Life is tough, but I'm tougher.

----Original Message Follows----

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

> >)

> >

>

>

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