Re: Mast cells and CU

[Guest guest]

Debbie, my hives don't go away in 24 hrs. either. Somestimes they will hang

around

for a couple of days. I have noticed since I switched off tagamet to zantac

they will disappear within 24 hours. I love that. I have also changed from

atarax to benedryl.

Successful combo for me. I am sorry you are having a hard time. Hang in

there. Love Carolyn

[Guest guest]

Hi Joanne,

I have chronic urticaria; cold urticaria, and

sometimes I do experience a kind of burning sensation

when I get hives. The burning/swelling sensation is

mostly on my fingers;palms and toes;feet. It is also

very painful and the more I scratch, the parts will

turn get hot red and it feels warm too.

Ermmm...got some questions, do people with

chronic urticaria have to go and test for Masto.? Are

there any other test they need to do? (I am not very

sure, so need some help! LOL!)

Take care, everyone!

-Elisa

--- Sheryl tundra_12@...> wrote:

Joanna -

I primarily have cold urticaria but sometimes have

flushing of my chest as well for no

" apparent " reason.

I rarely get bumps or lumps, when I flare up it

looks

and feels like a bad sunburn. After about 5

minutes,

the burn turns to itching, which lasts another 5

minutes or so and then it subsides. I never

swell up

either. I guess I'm lucky in that respect.

-Sheryl in NJ

--- carpetvct@... wrote:

> Jackie -

>

> You are right there is no test to rule out Masto.

> Not even a bone marrow. I

> don't have any other symptom except a little

joint

> pain which comes and goes.

> I am not taking any meds b/c nothing as

helped. I

> have even tried

> Gastrocrom with no results. Do people with

CU have

> the burning skin

> sensations. Not itching........ its more

like a

> burn.

>

> Thanks

> Joanna

>

__________________________________________________

[Guest guest]

Hi Elisa. If everything else has already been ruled out - thyroid, cancer,

parasites, autoimmune problems, sensitivities and allergies, etc etc etc,

and you still don't know what the cause is of your hiving... AND if you have

any of the other symptoms of masto going on as well (see below), then yes,

masto should be considered. If you have multiple symptoms of masto, then

testing is a must. You can't just rule it out through testing, though. Just

because a test comes back negative does not mean you don't have it. It can

only be ruled in...

Bear in mind no two patients have the same set of symptoms. Severity greatly

varies as well. BUT, if you do have CU and any (even one) of these other

symptoms, then masto should be considered. The list is long, but these are

the more common symptoms....

Urticaria Pigmentosa (not all masto patients have this, but all people with

UP have masto) - presents as various markings, for example:

- bruise-like marks that don't go away and don't change color (they stay

brownish)

- red mole-like growths

- reddish or brownish markings that look like a squashed spider

Gastrointestinal problems (chronic) - GERD (reflux), diarrhea, constipation,

or a combo of both, nausea, vomiting, heartburn

Physical urticarias - solar, cholinergic, cold-induced, dermographism, etc.)

Irritability

'Brain fog' - inability to concentrate, memory problems

Blood pressure problems (fluctuations, or your 'normal' b/p is abnormally

high or low)

Swollen lymph glands, spleen, and/or liver

Bone problems - osteoporosis, fractures, pain

Headaches, including migraines

Itching with or without urticaria or other rash

Strange sensations in the body - tingling, burning

Breathing problems - asthma, feeling short of breath

Dizziness or fainting

Fatigue

Flushing (sensation of warmth, like in menopausal hot flashes, may turn red)

There are currently 5 tests for masto: bone marrow biopsy, flow cytometry of

bone marrow aspirate, 24 hour Methyl-Histamine urine test, skin or spot

biopsy of a lesion (like a hive or UP spot), and Alpha-Pro-tryptase blood

test. Currently, the NIH requires either 1 major (positive bone marrow biop)

and 1 minor OR 3 minor positive tests to confirm a masto dx.

Air hugs,

Jackie

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[Guest guest]

Hi Joanna, I will suggest you get a second opinion, perhaps have your biopsy

slides sent to Dr. Schwartz at the U of Va. Alena has red spots on her face

and ears and her new allergist said it was TMEP. They are very different

from the bruise looking marks she has on her legs. Which are the urticaria

pigmentosa marks and even those she only has maybe five or six right now.

Although if she is hiving badly will have many more and the colors vary as

well from brownish/fawny to a raspberry looking mark. Her tiny red dots on

her face are always there. I honestly believe you need to explore masto

with some more detail. Have you ever joined the mastocytosis society?

There a couple of wonderful people that I could get you in contact with.

Much Love,~Alena's Mom (who has chronic urticaria and masto)

Re: Mast cells and CU

> Dear :

>

> I don't know what to think any more with this crazy thing of mine. I've

had

> two skin biopsy both indicated an increase in Mast Cells. The conclusion

of

> the biopsy indicate I have what is called Telangiectasia Macularis

eruptiva

> perstans Supposedly a rare form of Masto. The problem is this........The

> researches at NIH have told me that it is not Masto b/c Tmep is always

> associated with Urticaria Pigmentosa and I don't have any UP spots and

have

> not ever had them. So, to say the least I'm very confused here.

> Furthermore, I have been checked for the tryptase and histamine and both

were

> normal. That is why I'm looking into CU. I guess the most important

piece

> of information for me is if other people on this line have these tiny red

to

> pink pin dots that are flush to the skin and that don't go away.

>

> Thanks

> Joanna

>

>

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

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>

> 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

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>

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>

>

[Guest guest]

The spots were biopsed three times. All indicated an increase in mast cells.

Tmep has the smallest amount of increase in mast cells. The researches have

now all agreed that they don't believe Tmep exists independently. (without

UP or some other form) I have been on the Masto site and they don't complain

of burning. The only time they get the burning is if they go into shock and

then it subsides. Their problems are more internal. Bone pain and GI

problems and shocking. My skin burns on a regular basis non stop. Theirs

does not..... Does anyone else on the line have this non stop burning of

the skin? (And I do mean burning Not itching)

Thanks a bunch

Joanna

[Guest guest]

Yes, Joanna, I get surface burning as well as the itchy pin prickles all

over. I have patches of my skin surface on my legs that even go numb for a

few days at a time after a bad " burning " episode.

form California

[Guest guest]

Hi

Is the burning 24/7? Have you had a skin biopsy? I also feel the pin and

needles. Horrible way to live thats for sure.

Keep in touch

Joanna