Hi Candace,

Infections can cause your spleen to swell (as you remember!), but as far as I know they don't cause your liver to swell.  Masto can do both.  When is the last time you had your baseline tryptase checked?  Do you have a regular doctor that you can visit?  If not, this would be a good time to go see a real mast cell specialist.   Can you remind us where you live?  

I'm sorry that you've been feeling so rotten!  Masto + infection is a very uncomfortable combination.

Heather

caormiston wrote on 05/27/11 at 13:24:40:

Isn't that what that little key chain remote thingy is for?  I forget all the time where I parked!  It's a good thing I live in a small town.

It does sound like you'll be in better hands soon!  In the meantime, since you've already been diagnosed with cutaneous mastocytosis, it's pretty safe to experiment with antihistamines on your own.  Have you tried another H1 besides Zyrtec?  Allegra is now OTC.  You could also try Claritin, Alavert, or Chlor-trimeton.  I take a combination of H1s... 20mg of Claritin in the morning and 20mg of Zyrtec at night.  I also take 300mg of Zantac twice a day.  I didn't really start feeling better though until I added Gastrocrom and Singulair.  My GP is the one wrote the Rx for Gastrocrom based on Dr. Castells' advice.  He's 81 years old and doesn't know anything about mast cell disorders either, but you have to love a doctor who's willing to BELIEVE you and LEARN

Hang in there!
Heather

Hi Candace!

I'm sorry you're going through such grief.  It's hard when you've not got doctors who know the disease, but that doesn't mean they can't help!

Candace, take advantage of your GP meeting and ask him to run a few routine masto tests on you.  Have him check for the liver and spleen enzymes and tests to make sure how they are functioning.  Also, have him test your tryptase as well.  It's important that the tryptase be run at least once a year when you've got proven SM.  this keeps an eye on the progression of the disease.   You should also have your CBCs being run with almost every doctor visit, for this is the window as to your overall health is concerned.  If you haven't had a bone marrow biopsy in years, then this is also good to have run perhaps every 5 or so years for it will pick up any other issues which the masto may be doing in your marrow.  

So, if your spleen and liver are giving you issues, and since masto is indeed known to cause problems with us there, you must have this taken seriously and investigated properly with masto in view.  

If you are needing a good hematologist, Candace, you'll have to travel to see him.  Dr. Jason Gotlieb is at Stanford in California but he's the best you have on the west coast.  Joan sees this doctor and he certainly does know his stuff when SM is on board.  So, if you show that you are having some important changes and that the masto is the cause behind the enlargement of your liver and spleen, then you may need to go and see Dr. Gotlib.  We are here to help you if and when that may be necessary!

Lisa

Hi Candace,

You should INSIST with your doctor to take a good look at this cough!!  CM, even though it remains only in the skin for a long time can indeed progress into systemic masto and it is known to attack other organs other than just the skin or bone marrow.  Even though your GP may be clueless, it's no excuse to be neglegent of your issues.  He should ask for a CT of your lungs and abdomen for although it is very rare, mastocytosis has been seen to affect the lungs, even though it's highly unusual that this would be your problem.  Yet, it is well known to cause problems in the spleen and liver and if you are having issues there as well as the coughing, then your doctor needs to err on the side of caution and ask for the full CT.  And since he's going to be looking, then have him order a bone scan as well and take a look into your bones for this is the major place it goes to first.  

So, don't be shy with your GP.  His not knowing the disease doesn't get him off the hook.  Besides, it would be a good idea to have these exams done already so that you can take it to the other two doctors and allow them to judge the exam - it would save time and tons of frustration for you and maybe even a few trips back and forth with the new guys!!

Let us know how your consultation goes, Candace, okay?!

hugs!

Lisa

Thanks Nanci,

This is something I will have my new allergist (when I see him) look into.  I appreciate any and all ideas!

Candace