Hi, I have been ill quite some time.  I know at this point I have a salycilate intollerance.  Took me awhile to figure that one out.  For the past year I have been seeing a very good allergist/immunollogist.  He suggested testing for masto.  I tried to talk to him about Mast Cell Activation disorder. He said that is the same as matocytosis ...so he is not knowledgable in this area.  He did run some tests, waiting for triptaise to come back, but got the skin biopsy back and it was negitive.  He said " good you don't have mastocytosis"...but I didn't even think I had it in the skin anyway.  I know you have to have a bone biopsy for the test of the systemic mastocytosis...but my doc. doesn't... This is very disappointing to me. I feel like I have done more research than he has.  I'm feel very hopeless.
My symtoms are strait forward- I have a trigger and have anaphalatic reaction.  I  had to quite my job because I started having reactions there weekly.  I have been unable to go into parts of my house in 6 months. I want to move but my husband thinks I will have the same reaction in a different house.
 There is some kind of trigger...I can not find! I have a reaction at the local Walmart!  I am fine at the Walmart a town over!

I also recieved my denial letter today for disability...According to them I am not disabled but I can not go into my house with out wearing a medical mask.  How am I supposed to get a job if I have to wear a medical mask when I walk out of my bedroom?  Sorry to be Debbie Downer but life just sucks right now.
On a high note my doc wrote me a script for ketotifen...so at least there is hope for my future!
Thanks for lisening!
Would love any advice.
Pam

Hi Pam,!!

Ana's right, you don't have any need to lose hope yet.  Just the fact your doctor put you on Ketotifen is a help.   Did you give your doctor any information on MCAS?   Most of us have to teach our doctors, believe it or not.   In my town not a single doctor knew about masto except one allergist and when I stepped into his office he flatly refused me as his patient and said it's too hard to work with me and he wasn't interested in taking me on as a patient  -  too lazy for we masto patients give work to our doctors!!!   But if you gently give literature which reinforces what MCAS is and work with your doctor without making him feel threatened by you, you may gain progress.   My dermatologist never even knew about MCAS even though she was a masto specialist.   She specialized in UP and knew well Systemic Mastocytosis but I've introduced her into a whole new world of MCAS and she's become even more interested than she was before.  I keep sending her more information and the more she reads, the better she gets and I don't feel like I'm the one teaching anymore!  


So, go slow, but keep giving your doctor literature.   A good doctor will WANT MORE!!

Lisa

Thanks girls for the encouragement!  To answer some of your questions...Deborah I would love to have your docs info!!!  I live on the West side of Indy but went up to the Carmel area just a few weeks ago to see a dermotologist.  Thank you! Thank you!  I really do like my doctor but he is extrememly over worked and hard to get to see, then when I am there he has to leave the office 2 or 3 times.  He has dubbed me his most difficult patient.  I'm the one that encourage him to give me the script for ketotifen...he said he had only prescribed it one other time but he would see if it would work for me.  So he is willing it is just aggrivating cause I am not a doctor and I do not play one on TV!
A coulple of months back I decided it was time to see a new doctor.  I was so excited this doctor was supposed to be so good, and I was able to see him within a week.  I had high expectations!  In my mind he was going to see all the data and look at it from a different angle and I would leave knowing everything was fine. What really happend:  I was rejected as a patient...I didn't even know doctors did that! He said he knew my allergist and he did all the tests that he would have asked for and that we would have to re-invent the wheel....I had all the results in front of me...I think he just did not have a dx and didn't want to mess with me.  I cried all the way home, and it was a long drive!
My doc has ran urine N metylhistamine or Prostaglandin D2, we are waiting on the 2nd tritaise. I think the 1st one was slightly elevated. He has ran lots of tests, I have even had my vocal cords looked at. (fun side note: when they looked at my vocal cords we did a baseline then I ate a small trigger food and you could actually see where my throat started to swell and then I started holding my vocal cords the wrong way.  So I went back and had had speech therapy on how to breathe when my throat is starting to swell.)   I have not had a bone marrow test done, not sure I care to...I guess the bottom line is... I don't care what they call this I just want to be better!
My triggers are very high, high and sometimes moderate salycilates. Water?? I was actually reacting to water.  We have an osmosis system. So I tried every kind of bottled water.  Someone on the salycilates forum recomended distilled and that has worked for me. I drink distilled with no minerals added.
Mold.  I can walk in a building and tell you if it has or ever has had a mold problem. (Great talent right?) I could not be in my house at all for a few months in the summer.  Long story slightly shortened...we lived in motels for 3 weeks, my daughter and I camped in the car for a couple of days, then I went a bought a tent and slept in it a week...begged my husband to go back to the motel, so we did, then I got on Am Track with my little medical masks and went to my parents house in AZ.  Stayed there a couple of weeks.  (That is were I was able to figure out the salicylates) Came home only to find I was still reacting to the house...so we did what anyone would do that is out of money....we insulated and put new flooring in the mini-barn and I live in it almost a month. My sweet husband stayed out there with me.  A few days before I left for AZ I was bound and determined to find what was setting me off.
All of a sudden there was water running out of a wall, so I thought it has to be mold!! We had contractors, plumbers, roofers, mold inspectors , and mold remediators out.  They could not tell where the water was coming from and could not find any extordinary mold source. We were all clueless but I was sick, angry, tired of living in a tent and maybe slighty bonkers!  I started ripping down walls, wearing my N-95 ofcourse.  No one else was going to figure it out so I did.  We did not find were the water was coming from BUT we did find mold!  The duct work had come apart, the insulation was covered with mold, every time the air condition, or furnace came on those sporse were thrown everywhere!  After the furnace guy fixed the duct work, we turned on the air and the leak started again, the airconditioner drain was clogged...had nothing to do with the mold but led us to it.  We have wiped everything down in our house with a bleach water mix. ( I was tested for every mold an I am not allergic to any.)
I do have some pets left we gave some away, we have a couple of dogs and cats.  I'm really hoping they are not the problem, there is no real way to test except to rid of them...that would break my heart...they are usually what keeps me smiling! Although I do not touch the cats and try not to touch the dogs often.  When it gets warm out I was thinking of locking the dogs outside and locking the cats up in the garage for a week or so and seeing if that helps.  In the back of my mind I can't help but think there is mold spores still stuck in the house.
I do well in my bedroom with my super giant aircleaner!
Sorry to ramble- but honestly you guys are the experts...so maybe you know something I dont.
One of you asked if I had spots, no, I have red blotchy flushing on my chest and neck, they tested a blotch and they said it was neg. for Masto.
Also he has tested me for the carcenoid and other uncommon things.
I do have a high ANA, I have for about 15 years, I was put on plaquinel last fall because I was so tired and sore.  My sed rate was normal so she said it was not Lupus, but mixed connective tissue diesease.  This is when I had my first visit to the ER.  Had a freaky rash that started on my leg and went up to the trunk of my body...my throat started getting tight.  They gave me the benydryl and epi and I was fine for about 30 mins. and it started again so they did another round  and started me on prednizone for the rash.  As soon as I ran out of prednizone the rash reappered.  So I was on prednisone for awhile.  The rash never came back but I started having aniphalatic reactions.
Also I found out that I am suddenly allergic to:
Cobalt
nickel and nickel in foods (these just make me itch)
a chemical in black hair dye and sulfa drugs
marcepto mix (used in making latex)
fragrance
niamyacin antibiotic
epoxy mix
These were discovered doing a skin test.
okay for my  meds.
Singulair
zyrteck (am, pm)
zantack(am, noon, pm)
benedryl and or atarax as needed and at bedtime
vitamin D -  my vit D is very low
Effexor
nystatin 2 times a day started this about month ago and I think might be helping not sure though.
I also take an epson's salt bath daily for 20min.  for the salycilate issue-this does seem to help,  sounds crazy but learned it on the salycilate forum! (magnesum cleans out some pathway)
Thanks for listening and for any advice...like I said you are the experts!
Pam

I'd just like to try to put in a supportive word regarding your denial of disability coverage.  I don't know if this is through Social Security or a private provider, but either way, pay attention to the time frame you have in which to appeal, and make sure you do appeal!!!  You many not even have any new information (hopefully you will), but it is still worth submitting an appeal.  

The first tier workers just flat out deny everything that doesn't fit their standard criteria, so simply accept that most likely you will initially get rejections.  The process can be long, but is worth going through as it will take a lot of stress off of you if you don't have to worry about money.    (Feel free to ask me about it, as I've gotten both SSD and private LTD, though both required involving lawyers.)

Welcome to the group Pam! I can also walk into a house or building and tell you if there is mold or mildew.Good for you on being persistant about finding it. Mold is awful, I haven't met a person allergic or not that can tolerate being exposed on a regular basis. I'm allergic to several molds. When I found out about all my different allergies like dust mites, and mold I just had this feeling there was mold hiding in my house and my husband swore up and down there is no mold. We had mold on the inside of our mattress, we found that out while cutting it up to fit in the back our our truck to take it to the dump. How the heck did that happen? While remodeling our bathroom we found mold behind the walls and the bathroom floor was dry rotted, the whole bathroom had to be ripped down to the studs. Once our bathroom was done and we got wood floors instead of carpet a lot of my allergies got better. One thing that helped me is a sinus rinse, sometimes several times a day to flush those allergens out.
I'm so sorry your are going through all of this, it will get better. Prayers and hugs for you! Take care.
Melissa

I hate mold! I just had to clean a moldy window track yesterday. Gave me a massive headache. I hate aluminium windows. Can't wait to get new windows.
Melissa