Re: reply to Molly Re Fixing Frannie/masto

[Guest guest]

Molly,

Frannie finally got her diagnosis, after several frustrating years. She,

like 's daughters and myself, has mastocytosis. There is no cure right

now, but a lot of doctors out there seem pretty confident that one will be

found... We shall see... Masto can be controlled with all of the same meds

that CU'ers take, plus oral Gastrocrom. According to Frannie's book, that

one drug made a huge difference for her. She started out with pain that she

described rather bluntly as feeling like she constantly had a stick up her

vagina. Over time she developed strange skin rashes (urticaria), stomach

problems, and other pains. On the Gastrocrom, she felt like a new person.

I can attest that Gastrocrom has done wonders for me as well. I have

systemic masto (meaning that other systems of the body besides the skin are

involved, Frannie also has systemic I believe), and taking the Gastrocrom

orally has stopped a bunch of my problems in their tracks - namely constant

diarrhea, brain 'fog' and crippling bone pain and chronic headaches. I still

get some stomach problems but now am learning what I can and can't eat -

before the gastrocrom, just eating period would make me sick. Now, as long

as I eat small amounts of food and watch the histamine-containing/releasing

foods, I do okay. The bone pain is still there, and flares when I get cold

and damp, but it is no where near as bad as it was. The headaches are not as

severe, nor as frequent as they were.

As this disease progresses, more and more symptoms seem to creep out. To

give you an idea of how it can progress, here's my story: I started with

good old-fashioned hives as a child (which we mistakenly thought were

mosquito bites), plus some reflux as I got older (around school age). By the

time I was about 10 or so, I was experiencing fainting 'spells.' In

retrospect, I believe I've had this disease pretty much all my life. When I

went thru puberty, the hives stopped, as did the reflux and fainting. I was

healthy as could be all through my teens. Had a twin pregnancy, and about

halfway thru I had hives - totally covering my body - for one day. Then two

years after my girls were born, had severe endometriosis and lost all the

'plumbing' except for one piece of ovary (to prevent menopause).... I

mention the endo because it is believed now that endometriosis is an

autoimmune disorder, and I've always felt it was somehow tied to my hiving.

Also, I've noticed a lot of the women both in our group and in the masto

group have had it.... Two years after that, the endo returned. I was

scheduled for my second surgery on a Monday, and the Thursday prior to that,

I awoke feeling extremely nauseated, and had a major headache. I was

experiencing what I thought were hot flashes (now I know I was probably

flushing); this stuff lasted all day. The next day (Friday), still felt the

nausea and was still flushing, and I was covered in giant hives. Sunday I

ended up in ER in full anaphylatic shock. That was the beginning of hell.

This was 14 years ago, and I've been sick ever since. Only in the past 2-3

years have the symptoms other than hives been getting more pronounced,

basically daily things now rather than here and there like they were. Or at

least they would be without the Gastrocrom...

Most mastocytosis patients have to go through years of b.s. before they

finally get a proper diagnosis. The average is 10 YEARS! That is so totally

criminal, in my opinion. I think one reason for this is masto is currently

labeled as a rare disease; there are only about 5000 known cases. Many

doctors have not even heard of it, and very few know anything about it.

DOCTORS DIAGNOSE WHAT THEY KNOW - they don't know masto, they aren't going

to diagnose it. AND masto is also believed to be grossly under-diagnosed,

and the majority of those people not yet dx'd have been either mis-diagnosed

with something else, or have been stuck with " idiopathic chronic urticaria "

or some other such nonsense. CU is a symptom of SOMETHING, not a disease in

itself.

Part of the problem is no two people's symptoms are identical. Look at

's two girls... And of course the old problem of being able to rule it

in but not out. One reason for this is that when they run tests looking for

a masto dx, what they are actually looking for is signs of mast cells in the

body. Well, everybody has mast cells - they are an important part of the

immune system - it's just that masto people have too much. So, say the dr.

decides to do a bone marrow biopsy. Well, mast cells tend to congregate in

different areas at different times. If they don't hit the right spot when

they take the sample for a biopsy, they won't find any mast cells (or not

enough to justify a masto dx). Doesn't mean you can then rule out masto,

could just mean they looked in the wrong spot at that time. But what if they

do find some? Does that mean it's definitely masto? Not really, but masto

can definitely be ruled in. It could also mean you have an infection or

injury at that spot and normal mast cell activity is taking place. Most of

the time, a firm dx is decided upon after several tests confirm presence of

mast cells, plus based on symptoms. AND that's after ruling EVERYTHING else

out.. So you can see why it's a tough dx to get.

At this point, I only have a clinical diagnosis, with no testing to back it

up. Everything else has been ruled out (in most cases, ruled out many times

- I can't begin to count how many repeated tests I have had done for some

stuff), and I have clear symptoms which are progressing. I actually had the

clinical dx about 12 years ago, but no one bothered to tell me they even

suspected it. I had to figure it out for myself. Then when I recently asked

for copies of my medical records, what do I see there? Mastocytosis!

Grrrrr!!! (Sorry to rant, but I'm still ticked about it.)

Anyhow, hope this all answers some of your questions. Sorry to be so

long-winded...

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com