Hi Jodi,

I was diagnosed with early SM at Mayo many years ago, and my c-kit didn't come back positive until recently.  That could just be a sampling issue. You have to get the right place to pick it up sometimes.

CD25, etc is just a marker for abnormal proteins on cells.  It can be on other types of cells with other conditions too, so that's probably why you didn't get the "masto label", though things are pointing toward mast cells acting up.  You have to meet several of the minor criteria if you don't meet the major ones.  

I meet three of the minor criteria, so that's why I have the systemic masto label even though I don't have a lot of the cells in my marrow. My tryptase runs around 19-24, just like yours.

Even still, just a few of those little guys can make you feel like crap, so whether it is MCAD or SM, you still can feel bad either way.

Get on your meds and give it a couple of months to die down and you will probably feel better.  I know, it is a lot of scary sounding stuff to have thrown at you.  Don't freak out, it will be alright. A relatively normal life is possible if you get the right medical care and meds. You just have to learn to know your animal and then work around it. Things will get better!  

Will keep you in my prayers!

Yes, that does make sense.  Thanks.

I want all of you who took the time to read my story and give me the peace of mind I needed to get through all of this so far, to know that I sit here in tears . (Happy ones ) because I feel so blessed to be surrounded by people who truely care for , and want to help those of us get through all this tuff stuff so that one day, hopefully we too can hold the hands, and give encouraging words to all the people who come here looking for answers, peace of mind, compassion, and friendship with those who can relate to and completely understand what we are all going through.  You have all been a true blessing to me.  I am at peace with everything right now, and I am definitley ready to move forward with getting all my test results into the right hands.  If any of you can direct me on getting my information to Boston  with Dr. Names, phone numbers or just simply how I go about it all you can e-mail me directly at jodi61036@hotmail.com  Again thank you all so much !!!!!   Bless you all !!!!  ~Jodi~

Hi Jodi,

I just saw your post.  Did you get the info you need about Boston yet?  If not, I'll try to get it to you in a day or two.  Am traveling tomorrow, but can Tuesday.

I´m sorry Jodi I´ve not gotten back to you with contact information.  I´ve been sick with a nasty virus and it´s had me down.   I´ll see if I can send it to you.


Lisa

GOSH!!   I GOT SLAMMED!!!


I got not only a case of tonsillitis, but also Stomatitis, or Coxsackievirus.   My mouth has been absolutely RAW with sores.  I´ve lost about 10 pounds from not being able to eat or drink.  I finally found that I could handle warm tea, but everything else causes intense pain.  Yet it took 3 trips to the ER to figure it all out.  Thankfully one of my doctors was there on Monday and I´d been in contact with her during the weekend and she was able to confirm her suspicions from my reports during the weekend.  She said that I´ve got one of the worst cases she´s seen and it´s taking its time to leave me - like a really bad houseguest!   She feels the masto has a role in this.  

And to make things even more fun, I´ve now got the infection in my eye!  It´s carried through the saliva and due to how much pain and swelling that goes on in the lymph glands in the mouth, there is a LOT of saliva production and I´ve accidentally infected my eye and now I´ve got to run after an ophthamologist to see about this.

And yes, IT´S CONTAGIOUS!

But it´s really had me down with fever and headaches and just overall malaise besides all of the tremendous pain in my mouth and neck its created.  

And that doesn´t include the fact that these viruses end up triggering our masto.   I´ve kept a really low profile on purpose to keep the masto quiet.  Thankfully the things I´ve learned has taught me that when you have a viral infection, such as this, you MUST CUT BACK to a bare minimum schedule OR ELSE!   And even then, I´ve been very, very close several times and barely was able to keep myself from a crisis.  

So, no Christmas shopping, no baking, no NOTHING!  This year my family has to do it all without me.  And NO PITTY PARTIES either, for I know well that I also can´t give into the luxury of feeling sorry for myself.   Besides the fact that this is self-defeating behavior, it´s NOT going to make my situation any better.  It is what it is and I have a choice of either making it worse by getting all upset about it, or just take the situation as it comes and try to make the best of it.  

I choose door number 2!    


So, yes, Joanie, I´ve gotten a whopper virus alright and hopefully am on my way to recovery, but I´m going to continue laying low for I don´t need complications.


Lisa

Lisa,
 I hope u are feeling better. I am so sorry you are this sick at Christmas. You are in my prayers for a speedy recovery.

Thanks for the well wishes, gang!   I´m still slowly recovering and still am not 100% yet, but I´m on the mend.  

These things happen and the reason why I shared it is because others learn how to deal with their issues cause we all have these problems.   Any kind of virus or infection triggers our masto and so we not only have the infection or virus to tackle, but it´s also complicated by our being immunocompromised as well as the fact that it triggers our masto!!

My dermatologist is now concerned that I could develop a bacterial infection on top of this, which she says is common with this coxsackievirus.  She´s wanting my local doctors to prescribe more antibiotics for me to give me some "coverage".  

What is comforting about all of this is that I´m NOT ALONE!!    It´s such a RELIEF knowing that my masto specialist is there in the background even though I only see her about once a year.   She´s THERE and when I need her, she RESPONDS!!!    

So, thankfully, I´m covered.


This is why we patients PUSH SO HARD!   Those of us who have been in the war and have had to do a lot of pushing to find our answers are sometimes very strong with those of you who are just getting into this struggle but this is because we have learned what needs to be done if you too are going to find the answers you are needing.    We want to see that you can find the doctor care we´ve found and we want to also help you find the understanding we´ve found, for with these two items in your pocket, you can deal with the every day situations as well as the longer-term problems.  

So, don´t lose hope and don´t get discouraged, KEEP PUSHING and eventually you will find that support and those answers you are needing!!


Lisa