Hello .. I am Ellen from Olympia, Wa

I usually find ways to deal with any health condition that comes my way.  
I HAVE STOPPED ALL PILLS... THEY ALL HAVE SIDE EFFECTS OR IS THAT AFFECTS.  For knee pain and back pain I was taking all kinds of things---it went all the way to GOOD DRUGS....I have discovered I can limit my standing, sitting and laying ...keep changing keep on the move by sitting when needed etc.

The doc's wanted high blood pressure..(just learned to take deep breaths and check how I feel)...changed my diet for most of things they wanted to give pills for.  

The doc gave me prednesone about 15 years ago...for nose or throat infection--I stopped breathing.. ended up in the hospital for a week--allergic reaction.  I gained weight by hugh amounts...and I have only learned to stop gaining and to maintain the large amount for some reason!! (oh and had the nervious break down that the doc said I would have from so much prednesone.. he said it was a wonder it didn't kill me)  Of course they were never sure why I quit.. I guess you would say almost quit breathing...

MY Skin: I started having skin issues in the second grade, I sure don't know how to spell all the skin conditions I have had.. but I am allergic to everything.. soap, bar-clothes, perfumes, several fruit and fruit drinks, things like air fresheners, any thing with preservatives run right thru  .... the conditions is in the family, my father-to my grandkids.
I have had pains in my legs since I was a teenager, now I have pain all over my body from arthritis.
I started Vilitigo in my 40's.. that is where you turn white..your skin pigment goes away.. it stopped around my neck...
Now I have Mast Cell disorder...
AND THE DOC'S SAY IT IS SO RARE...THAT THEY DON'T KNOW WHAT TO DO WITH ME.. OR WHAT TO TELL ME.. they took a biopsy to tell I had the disorder.. have scanned me.. and xRayed me...

The worst part is that I started pointing out my conditions summer of 2011... but they didn't do anything for me until December.  Now I hurt and itching and burning.. it seem to get the worse towards evening.
I have found that lotion seems to help my feet and sometimes my hands.. can't seem to be able to get enough on my back.  They keep testing to see if has gone to the bone.  I have always had what I will call tummy problems.. but now I have to be careful where I go and know where the bathroom is.  I seem to have pain when hungry an throat burns when I drink some drinks.  Soda-like gingerale help with the stomach problems.

I guess I am looking for what comes next.. how far does the Mast Cell disorder go.. I had one source say Osteoporosis... weak bones.

Ellen in Olympia...  I am finding that us folks with bodies that react to things around use seem to be more in tune to our world and what they call the other side???!!!  What do you think??

Was it a skin biopsy that came back positive for mastocytosis?  Are you saying you have had multiple bone marrow biopsies, and they came back negative?  Do you have spots that itch and welt when you rub them?

Yes it was a skin biopsy that was positive. No bone marrow..just a scan that was to tell bone condition and it was so unclear that they did multable xrays to see what the collected sites of high metabolism ..which occurs at cancer sites...and he said "but yours is arthritis or inflamation...

I have an itch... then the spots show up.. and they are the most uncomfortable later in the day.. and my hands, sometimes parts of my legs and feet will go from itching to burning.  In a real bad case I will have itching all the way up my back into my hair.  Also I have diarrhea sometimes so bad that I have to rest afterwards.  That happen less often since I do not drink anything stronger than coffee.

In trying to find answers I found  Cem Akin --and I hope I have connected my doctor with Cem.. he has the info and I will see him this week. My doc visit will be the first time since the scan...I will be asking him about massage, for all my joints and pain along with acupuncture...

I am trying to change my diet even more...I have always had to be careful of what I eat..--- no.. or very little Choc, soda, salad dressings but I sure could look up other things I should stay away from.  Any processed food have never been good for me.. some of them really make me tired.. or foggy.

Since I have started having these itching problems .. I seem to cry easy in the morning ..    have you heard of that before.   Just cry a couple of good crys and then your done for the day...

Thanks so much for the info .. and I will read more of stie..Ellen

Hi Ellen,

Here's the link to a low histamine diet that will tell you foods to avoid and others that might not bother you.  It's not the same for everybody, but it might be a place to start to see which foods contain high levels of histamine or can cause direct histamine release.

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

If you feel better on the diet after a few weeks, you can start adding one "new" food again every couple of days.  That way you'll know if food has been a problem and, if so, which foods are causing your symptoms.

Try to read as much as you can before your doctor appointment so you'll know about tests the doctor should do and which medicines might be helpful to you.

Your symptoms can be part of anaphylaxis or something else.  The best case will be that the doctors will confer, give you a diagnosis and treatment to help you feel better.