Just joined.  Found the site by Googling mastocytosis, as my father (64) was just diagnosed.  He has Indolent Systemic Smoldering Mastocytosis.  I've done my fair share of research on line, but a lot of it is, admittedly, a bit scientific for me and I'm not sure what to expect, whether I need to worry more than necessary, what I can do to help, etc.

He has a wonderful wife that is there for him should he need assistance.  My father and I work together in a business he started, so we do get to spend time together regularly.  Otherwise, I'm not sure what will change in his life, besides the fact that he can no longer drink alcohol - apparently, that is his 'trigger?'

Anyway, glad to find a place to ask questions, find community, and learn about this rare diagnosis.

Thanks for welcoming me.

Hi Kevin....So nice of you to do research for your father in law!  Do tell him about the histamine free diet.  Google it....the site by ICUS.  Very informative and might help him.  Alcohol is high in histamines among other things that he may have already noticed trigger him.

Hi Kevin!  Welcome to the forum!   It's great that you are trying to help your dad by becoming more informed yourself.  Very wise of you for as you work with him so constantly, you really need to be aware of how masto works and what warning signs are there for you to be able to intervene for him.  Often we patients start turning red, with rashes or a flush on our face but we can't tell this is going on most of the time.  I've had my work colleagues come up and say, Lisa, your neck is all red and then when I took a moment to realize this, I was also able to realize that I was shaky and right on the edge of an attack, which I'd been too busy to notice.  So, by your being aware of these symptoms, you can intervene before an attack hits your father.

Another sign, besides the rash/flushing is confused thinking.  All of those histamines running through our bloodstream and in our brains ends up making us have what we call Brain Fog.  It's a period of when our cognitive abilities are severely impacted and we litterally can not think straight!  We can't finish sentences, or we fish for the word for too long, or we can't express our thoughts clearly enough and we seem spacey or confused.  This is a very important outside clue for those around us for it's not our normal and yet, we get into a situation that is so difficult that we can't even identify what is wrong!  Choices are impossible and making decisions are like pulling teeth!  

Kevin, these are but two simple, but very important outside signs that you can easily see that makes you say to yourself, Dad's not doing well here.   We can get easily irritated when we're like this - very impatient with ourselves, others, the sitaution.  We get grouchy and nervous - sounds are too sharp to our ears and light too bright.  We seek out peace for our nervous system gets easily disturbed and even our sense of touch is highly sensitive.   When you see any of these signs then you need to begin question, what's going on, is Dad on the edge of an attack or episode?  You then need to tell him, Dad, I'm seeing this and that, are you okay?   Sometimes, Kevin, we are so far into the reaction already that we're struggling to figure out what is wrong, we can't identify it because the high levels of histamines are clouding our ability to reason it all out.  For me a real clue that something isn't right is when I have to ask myself What's wrong?!  This for me is already a sign that I'm in trouble and need extra meds.  

Remember one thing, Kevin - although your dad has to live with a chronic disease, he's not an invalid.  He 's not like a patient who has a disease which robs him of his usefulness and he's as quick and as alert and as capable as ever.  He's only turned into a tremendously allergic person, that's all.  The anaphyalxis is a potentially dangerous reaction and this is where he can get into trouble, but otherwise, he's perfectly normal and capable, only insanely allergic.  


Now, as to your father's form of masto, if he's been classified as "smouldering" this is not good.  It's not that he's gone over into the aggressive form of masto, but he could.  They use the world "smouldering" and with good use for as you know, where there's smoke there's fire.  Masto has the POTENTIAL with some of us to progress into the more dangerous form, which is aggressive masto.  Your father's form is serious enough that he must make some very important changes to his lifestyle in order to prevent the disease from getting worse.  The researchers don't have all the answers for us yet and they don't know how masto can go from the plain indolent to smouldering to aggressive and they aren't certain that it will even progress into this form, however, because they don't have all the answers they tell us that we patients must try to limit our triggers and triggering because they fear that in our triggering too much we end up provoking the disease and making it progress and thereby do more damage.  

So, although your father's not into danger yet, it is, however, doing damage to some of his organs beyond that of his bone marrow.  The more your father can keep from doing all of that triggering the better!  He needs to reduce his stress levels and possibly even make lifestyle changes if they are the kind which provoke the disease.  He may even need to retire since he is of the retirement age.  Physical exertion triggers mast cells and if his job is one which causes a lot of physcial exertion, then retirement would be a good idea.  If the stress is mainly mental, then you can help to reduce this by releasing him from those mental burdens which stress him so much.  He needs to be able to drop work those days which are not good for him and to listen to his body's signals when he's feeling bad and to stop ignoring the issues that masto causes and istead work WITH the disease and not against it.   Masto is not like a cancer or something like that in which the patient decides to "FIGHT" against it in order to overcome the disease.  Masto is one which requires for us to cooperate with the illness so that we can keep it as quiet as can be - we have to work with masto and not against it for going against it, ignoring it and refusing to listen to the triggers will only feed the disease and get us sicker.   So, that means eating an appropriate diet, getting lots of rest, reducing stress, and taking our meds appropriately and LISTENING to the triggers and not ignoring them - avoiding them at all costs!!

I hope I've helped you a bit and please feel free to talk with us any time you want understanding!  We've got many of our men here, Kevin, who can help you and your father especially when it comes to talking about a man's world and how this disease affects him, for it affects our lives in EVERY aspect, including sexually and nobody else better to help your father with some of the more private aspects of it than another man who must also live with the disease.  
So, please feel free to ask, for I'm certain that some of our men will be more than happy to answer your questions!   Ask your Dad to come on here cause we can help him also deal with the frustrations of being sick!  We have some great people here and we're all more than willing to help one another out.

Lisa

Oh, by the way, the REMA protocols we have here and  they are VERY IMPORTANT for your father to have on hand should he have to go to the hospital or do some exams like at CT with contrast.   We are highly "allergic" to many exams that need to be run and we use the REMA protocols to give to our doctors, the hospitals and for our own use in keeping ourselves safe.

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293571751

Welcome to you and your father, Kevin!

I just want to agree with what Joan said.  A CBC (complete blood count) and CMP (complete metabolic profile) can tell your father's doctor(s) a lot about how his bone marrow, liver, and kidneys are doing... often before any serious problems develop.  These are very basic, routine blood tests.  Your father should get his own copies too!  It's his right as a patient.  It's a good idea to learn how to read them and know what his normal numbers are.  

Alcohol is a common trigger.  Has your father noticed any others?  Is he taking any medications?  Some people with mastocytosis have a lot of symptoms... some don't.  It's very individual.

Heather