Heather, you're so right!   I wasn't talking about biopsies as far as diagnosing a mast cell disease goes, but that of biopsies to see what is going on in there.   When a patient is in the diagnostic stage of the disease, you're right only those two areas are useful for diagnostic purposes - skin and bone marrow.  This is because, according to Dr. Castells, there are not enough doctors doing biopsies in other tissues in order to find out what is considered as too many mast cells.   So this is why those two tissues are the only ones that they can really go by.  Intestinal tissues are becoming more and more biopsied and thereby more reliable to know what may consist as to mastocytosis of the intestine and the bladder follows, but none of the other tissues.   My cervix showed 110 x to the field but she was looking for 115 x to the field to consider it mastocytosis and so I came up short with that.  But it still would not have been considered "diagnostic" of mastocytosis and instead just another finding.    However, the biospy that I'm referring to here is that of trying to identify the cellular activity that may be involved and gaining an overall picture of the patient's disease.  Pieces to the puzzle.    So, when the doctors are considering this aspect of our disease, then yes, any and all biopsies are indeed helpful for they give the doctors an overview of how the disease is affecting our bodies and what it's doing.   This is how we know that I'm not only autoimmune but also autoinflammatory.  By already knowing this, we are able to presume as to this situation going on in my lungs that this is the masto which has been triggered in me and that these nodules that have appeared as of my open heart surgery are indeed some kind of autoinflammatory growth caused by this form of my masto.  So all of the different biopsies that have gone on in my case, the fact that any tissue that has been taken with surgery has been run through the immunohistochemical testing, this has given my doctors an overall view of my form of this mast cell disorder and although we don't understand, it, we have better understanding of my body and what is going on with it.  

So, yes, Heather, you are 100% correct, only those tissues are diagnostic.  But it's the overall picture that also is important and biopsies and proper testing are the only way to find out what that is.

 
I can only add to this that I sure do wish it were a lot easier!!   I'm scheduled for yet another colonoscope and a new search for those intestinal mast cells!  We've also got to see what's going on within my lungs now, and the testing that's going on with my aorta tissues is rocking the medical boat because I have ended up with a the C-Kit result coming back as negative on my mast cells within the aorta tissues and that's highly abnormal!  Mast cells are supposed to be positive for C-kit in mastocytosis, not negative and what it all means is now being questioned!!  And why has it been seen as negative in my aorta tissues of all places, especially when they've shown positive in all of my other tissues?!!!  

So, here we go again with LISAZILLA rocking the medical world's boat with weird findings!!!   Boy does this get OLD!  

Ramona, you are too humble. Did you all know that Ramona is a nurse as well? Lisa is practically overflowing with medical knowledge, enough to have an MD. Heather is our college professor who is definitely an expert on not just Masto, but the autoimmune aspect of it. And the list goes on. I could go on and on about many others here who are equally valuable in both knowledge and compassion. Thank you all for chiming in here to help Gibby! You are a great community!

Josie,
Im so sorry Hon, I dont want you to be scared going into spring. We've all been there done that, no fun. I forget--can you take Vistaril?? It has been soo good for me, that and Singular and Chlotrimeton. (I know rou call them by different names in England).

If youre reacting that often, time to increase something and I dont think you should wait til your appt.. I dont want you taking any trips to the ER before than possible...Hon, you know youre body, smack that flush down LOL.. throw a pill at it!!

Do you have an emergency dose of prednisone ready IF you should need it?? It helps me to pat my purse and know it wont be a severe reaction if I need it. Security LOL.. Hey it helps... my energy level is suddenly going up and Im feeling WONDERFUL.. 4 shopping trips last week woohoo.. I wouldnt leave home before Now I had my hair done and took my daughter out for dinner! Thats what I want for you Josie.. the feeling that YOU are controlling it and no fear..
love ya Hon
me

Josie, another thought.. mine lump in the axilla was getting bigger and so painful.. I also believe it was obstructing blood flow to a degree--how are your fingers and thumb on that right hand feeling?? I took a course of prednisone and it helped force it to receed...Now Im almost off it and the swelling is still there but at a much lesser level and the feeling in my arm is so much better. I also used a castor oil pack (externally) with a heating pad set on low for that lymph area, then I elevated it and I think that helped too...so far so good..

I know its related to the masto, but honestly I dont remember the mechanics of it--but Heather does!  We could use an explanation dont you think?? LOL... Ohh Heather!!
Love ya
Ramona

PS Josie, email me, I have that article about how Vistail helps brain fog, pint it out and bring it to the doc.

Hiya ramona ,

Thanks I will Id love lasix ( fave frusomide) but thats my inner cardiology nurse with potassium . Ive tried convincing my docs to prescribe it  , but they wont . I know not all my weight is fluid but a large amount is . So it would help with that as well .

I am doubling my ranitidine for now . I have some scope in available doses to ahve xtra singulair if I need it

I asked a cardio question of the new doc . I think ill persue it with my GP . As my echo , december 09 showed an enlarged septum and I think a further echo would be wise . I will discuss lasix with my fave cardiologist . hes called Dr papouchado , Dr P to his nurses . he is amazing and will think outside the box .

My fingers are just tingling , no numbness or pain in my fingers . My perfusion is ok , capillary refill good . The fluid build up is noticable in my upper arm with extra ripples and pain . I am taking paracetamol ( tylenol ) and its helping . I dont know if that would be safe as it is a salicilate . But it figures if it is prostaglandins , that paracetamol helps .
Maybe the cold hands are not infection but reduced perfusion ??? This happens when the paracetamol wears off . i am often vomiting at this point . ??? smooth muscule spams ??? from prostoglandins ???

I evlevate it at night xxxx ill try a gentle heat pack .

Its too sore for a bra side pressing there at the moment . I need a soft bra for when this happens , as its the wire that is bothersome .

I had a soak in the bath this morning it was lovely . the carer helped me in and then a good half hour later my partner helped me out / dressed etc .  

I only have problems with my feet when my sugar is high. This is apin in my toes and a burning sensation on my soles , esp if my feet are cold . In this situation i dont feel cold , just burning . when my sugar is ok . I have no pain in my feet .

My bone , muscle and joint pain is not changed by my blood glucose level .
hugs
Jose

Woohoo, Josie you already sound better to me!! You go girl... that masto takes orders from YOU not vice versa

Heather what would I do without you? lol.. I know my heart function output is good, they tested it with the last shock lol.. probably the kidneys, you know my IC.. it was under control too til the last shock--but its getting much better now that Ive added some meds!
Thanks Hon, you make it so much easier for all of us!
love you,
me

My doctor replied!   Oh how I appreciate my doctors for they're truly terrific!   He told me that it's the cytolytic vaginosis.   This is what was caused by the candida and after we got rid of the candida this is what it had caused and then this is what had to be treated.   What happens is way too often we patients think we know our bodies but there are times when even we are fooled for this truly felt like it was the very same thing as the candida only I didn't have the same amount of secretion going on.  And since my doctor had never treated this before, he didn't recognize it either.  It's rare.  But it was only after he began to realize that what he was treating was not responding to his treatment that he began to take the right attitude towards attacking it and then his treatments got more specific and he began taking the necessary cultures to rule out and rule in the appropriate things.   This is why I insist that those women who bounce around from one doctor to another often cheat their doctors of the opportunity of finding the answers, but also those women who insist on home remedies may be only causing more harm than good for they're not on their own able to do the appropriate testing to see exactly what is going on in there.

Now, Gibby, as far as your Dr. Crandall is concerned and her understanding of your situation, all that I can suggest is that you should ask her to speak with Dr. Mariana Castells at Harvard for Dr. Castells is an authority in mast cell disorders.  

you see, Gibby, we can all go round and round debating these things but we are all patients and even though some of us have had to study our cases as though we are doctors, the fact still remains that we are none of us doctors.  A mast cell disorder, Gibby is a systemic disease, it is not limited to a specific region although it can affect one region more than another.  It's a blood disorder and this is why it affects the entire body and not just the skin or the intestines.  It's a problem with the mast cells themselves and they are throughout the entire body and this is why we patients will tell you, if you aren't reacting in other places, then this vaginal issue is not a mast cell disorder.  Could your mast cells be reacting vaginally, sure, why not?!  They're designed to do just that!   If you get a bee sting doesn't it turn that area red and itchy?  yes, and those are your mast cells which have caused that localized reacting.  The runny nose you get from a cold, the stuffy sinuses, and fever with a flu, this is all mast cell mediated.  But does this mean that you have a mast cell disorder, NO!  What you have are normal mast cells reacting and doing their job and function on a normal basis.  

A mast cell disorder, however is a very severe disease which causes life threatening reactions to many of the patients who have it and it's SYSTEMIC.  It causes reactions in the entire intestinal region, the entire respiratory system, the cardiovascular regions, the skin etc.  This is because our entire system of mast cells have gone crazy and are genetically defective in some form.  It's very rarely that we have only a regional situation going on and it's never that only one region is always affected.  It's always several things going on at once even though one area may be more consistently affected than another.  This is what a mast cell disorder does.  What your doctor is telling you about is normal mast cells and them doing their job in a specific region.  Count yourself very fortunate that they are indeed doing their work even though you're being tortured.  The mast cells there are not the problem but the root of the problem is the infection or whatever is upsetting your mast cells in that area.  

If you doctor continues to insist that there is something wrong with your mast cells then she needs to speak with Dr. Castells at Harvard.  We can give you her contact information if you want.  But for your doctor to put you through the rigors of a mast cell investigation without any basis of other symptoms showing themselves other than this regional symptoms then she's putting you through very unnecessary testing and even risky procedures for we patient have to go through bone marrow biopsies and endocscopes and colonoscopes and various other invasive procedures and scans that are expensive and exhausting!   Your doctor must have more than just a pesky vaginal infection to seriously suspect mastocytosis!!  

If you wish, I"m sure you could write to Dr Castells yourself and ask her opinion as to this situation, but most doctors like to only speak with other doctors and you may not get a reply.  

But please be at peace, from what you are describing, you don't have a mast cell disorder and are fortunate that it's only a stupid vaginal infection, as tedious and disturbing as it is.  Believe me, I sympathize with the torture it puts you through for I too had to bear it out for 2 full years until my doctor was finally able to rid me of it!  But since I've been through this and have this experience in working with him, and I also know the before masto and after masto changes I can assure you that there is no such thing as a mast cell vaginal disorder.  There is only a mast cell disorder and it's fully systemic and never just local within those tissues.  Even those patients who have the mastoctosis localized to their skin lesions eventually go systemic because the mast cell is created within the bone marrow, the spleen and the liver and from there they go into the various tissues.  You can not and will not have an isolated situation of only that one area being affected.  Although there are cases of increased numbers of mast cells in other diseases and conditions, those mast cells are ALWAYS NORMAL in their morphology, they are never defective.  They will migrate to areas which are being bombarded by some kind of infection or bacteria, for this is their normal role, and once that need has passed, they disappear again.  So, although you may have an increase and they may be active, it's not they which are the problem here, but something else which has called them into action.  

I hope this isn't too confusing for you, for it's really a rather complex science to understand.  As Dr. Castells has told me, very few doctors really understand the mast cell and it's function and my experience has seen this to be truth!

I hope this helps

Lisa

Josie, read my post, it's #41.  I am describing another problem I have.  It's complicated.
 Thanks Lisa, I understand what your saying.  I am hoping that since I am rid of the yeast, and hoping it can stay away, then this problem will eventually fade away.  In the meantime, I have my antihistamines, and I'm on the lookout of trigger foods.  I also have my special cromylyn and astroglide mixture for topical use when I really need it.
  ugggg, so it was the cycloitic vaginosis. Did you read my previous post?   I thought so!!! I knew of it when you said baking soda douche.  I had already asked my doctor if I had this weeks ago.  She said NO.  Oh well, so much for the easy cure!  But I'm glad that you solved your problem!