CU is chronic urtcaria and there is an autoimmune chronic urtcaria both associated with mast cells and which can be associated with autoimmune diseases...this is why I asked if your husband had an ASST or are they past this?

Many patients with urticaria and mast cell disease have tested positive with the autologous serum skin test (ASST). In this test, the patient's own blood is spun down and separated into plasma that is then injected back under the skin. A wheal at the injection site usually indicates an autoimmune disease. And in the book, "Urticaria and Angioedema," by Drs. Greaves and Kaplan, the basophil histamine release test is described to confirm a positive ASST.

Taken from this article which also mentioned an IL6 test to determine extent of disease

http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm

Here is something on the net that mentions CU with thyroid and autoimmune conditions...when we have to do our own research we are at wits end...

http://202.70.88.22:9098/nams/cgi-bin/library.cgi?e=d-01000-00---off-0nams--00-1...


maybe this will be beneficial for me it means I must add more questions onto my list for Castells...hope you can access info

I do not get hives either but I do have dark spots on my legs which look like hair folicles that come and go...I mentioned this to doctors and thought is was RMSF - rocky mountain spotterd fever but that being said maybe it is a form of urticaria

http://www.nature.com/eye/journal/v17/n6/full/6700467a.html

here is another interesting article on the eyepiece and with like I said my eyes are bothersome I will mention this to Castells as systemic steroids and topical seteroids have not helped.   We will see....

what I would give to again be able to sit in a casino and play texas holdem rather than on this darn compuer ...lol.....prior to becoming ill my only contact with a compter was at work...

Star

I have been around the block as far as doctors go, many rhemuy's, that only look for MCTD...hematologist waste of my time and I am hoping I do not see Greenburger, personal reasons.

Plaquinil, steroids have not help me and have been on some extreme immodualting therapies (IVIg, PE made symptoms worse) but not chemo as most do not have the guts to try it and since a diagnosis is elusive, well.

As far as CU I will ask Castells if she will do an ASST ...as and far as urticarial vasculitis not sure it lies there as some of the treatments I have had should have worked and I think I would have more damage to my organs by now, I am not sure.  I had a basement cell membrane test and figured that should have detected some form of this, no?

The doctors have not identified any mixed connective tissue disease such as lupus etc.....I am not so sure it lies there becuase of such a high ANA, maybe maybe not.
Although I do have some black spots on my legs they are not numerous but will ask. I hope she knows about urticarial vasculitis more so than the other numerous docs I have seen or at least will try something different...Like I said the most puzzling aspect aspect of this is the numerous mast cells in my conjunctiva.

I am hoping Castells will pull no punches and I have a friend that knows her well and will help me get my questions to her before my appt and will interceed on my behalf.....been to long of a road.   It is an ongoing saga and most docs just give me a script of revolving door.


Thanks

You all have been very kind and yes probably a bit more complicated than mast cell.  I do have hashimoto and take a med for it, there was a bit of relief but not much. A doctor referrred me to Castells is at Mass General and I think they all share same info so she should have it or accesses to it I would think if not I will give her the release as there is allot of it.  As far as testing we will see what she orders I have had allot but never been to an oncologist, maybe Dana Faber I would mention as carcinoids I gather can be tricky and depending on their location your body may or may not excrete enough seratonin to be detectable.....not 100% sure and did at one time have a mild uptake above left adrenal but endo doc at Lahey thought it was nothing.  Maybe I will have that rechecked as he didn't even test me for thyroid antibodies just normal hormone levels so it maybe wise to mention to her.


I do not doubt I am under medicated but with what is the question, one doc mentioned rituxamab but this would require a doc with a different out look than most at Boston, but we will see as it has been mentioned.  We have a hospital here in RI what is Women's and Infant's it is basically where children are born.  One day they had a commerical on the TV mentioning how they are familar with various diseases such as autoimmune because they are more associated with women then men.  Made sense and I may not rule them out as an option.  

Low histamine diet...I am not sold yet about this mast cell thing and will wait to see what she has to say.  At times watermelon will set me off and I do not think watermelon is high in histamine, my triggers are not what I would think and I am not sure what is a trigger or not...sometimes maybe chocolate but most times not....not really sure, I eat fish...I do not doubt there is a relation with my gut but how and what has been a question.  I had at one time terrible gallbladder pain it was functioning at 94% via a hida scan but pain was awful, when it was removed it just doubled my symptoms and I learned later my ANA was elevated and thought they should have looked more into that rather than removal but it's over. Alchohol does set my eyes aflame,brain I never had the reaction to it like I do now.  Why I wonder is mast cell is secondary disorder..and hope she can help firgure it out.

I sure would like a glass or two of capt morgan would at times be what I want and it is like Dean Martin said "I feel sorry for the people that don't drink, because when they wake up in the morning it is the best they are going to fell all day"    

Does anyone know what a FCe receptor blood test is and it's relation to mast cells?


quote....by rudyard kipling  

so I'll see em' later on
in the place where he is gone'
where it's always double drill and no canteen
e'll be squatin' on the coals, given drink to them poor souls
and I'll get a swig in hell from gunga din...

Thanks for the info and encouragement

Joan

I am not sure what you mean when you say put your test hashimoto, to the far end of the normal range....would you mind explaining....
my hormones are within "normal limits" so I am confused...
I am on 75mcg currently but like I said not sure what you mean

I am kind of thinking the info from Mass General would have been sent to B&W of they are on a similar system

Thanks

The normal range for TSH (thyroid stimulating hormone)  is .3 to 3.  I feel better and have more energy on a dose of thyroid medicine that keeps my TSH closer to the lower end of that range.  

Joan

No, I haven't heard anything about cactus, but I do take quercetin and think it helps.  Hope your appointment goes well with Dr. Castells.