Anyone out there with SM have terrible bruising?  I keep finding more and more bruises small and big.  Right now I have 2 huge bruises on one arm and as bad as they look you would think it would have hurt when it happened but I have no idea where they came from.  I have several small ones on my legs, butt etc.  Also notice lately if I even get a scratch (minor one not big or anything) I bruise and the scratch scares like it was some big injury.  Don't know if this has anything to do with my UP spots disappearing or not.  I have only found one article about UP regressing in SM and that said that 2 out of 10 patients w/UP/SM where the UP regressed, 2 patients SM turned to ASM and the other 8 had their SM symptoms lessen.  That article was from 2001 so I have no idea what's going on.  But it looks like I have beaten.

Hmmm the heparin would explain alot.  If I get a little scratch sometimes it will bleed like there's no tomorrow.  My periods in the past year have been really heavy and last more than a week.  I don't know if the docs ever checked heparin levels.  There was no need I guess since SM was confirmed thru bmb.  I wonder if my mc's are continually leaking.

Yes, Heparin is released from MCs.   And yes, Wendy, I think  you need to speak with a masto doctor about this for I too have read those articles on the disappearing spots and what they indicate.    I would strongly suggest you speak with Dr. Akin about this and ask what he has to say about this.  If I were doing that kind of bleeding and bruising, especially with your periods, this could be very dangerous and you need advice as to what you need to do.  

And, if I were you, in speaking with Dr. Akin, if he replied that this was not good, I´d ask him if he´d see me ASAP.  

You know, Wendy, you sound pretty knowledgeable about masto and obviously youre doing research.  Yet I know from my own experience, our tendancies are to look at this from a rather detracted or distant viewpoint.  It´s a self-defense measure to do so for then it doesn´t scare us so much and we don´t take it all so personally.  However, there comes a time when we must step back into the picture and analyze our own cases with the literature and I think you need to step back into the picture and consider what you are seeing with your own case and what the literature is indicating and question if perhaps it´s time you see a high authority.  You´ve mentioned already having done chemo.  Well, from what I´ve read, not a sane masto authority will do chemo on any ISM patient, only those who are going from smouldering into aggressive masto.  I can´t help but wonder if your doctors didn´t jump the gun and may have caused your masto to go into a direction it may not have gone otherwise.  I don´t wish to plant a seed of doubt for I don´t know your case and I don´t know who your doctors are and this is why I think you need to speak with someone like Dr. Akin and ask his advice.  You obviously need another opinion for if your doctors aren´t paying attention to such signs as subcutaneous bleeding with a case like yours, then I have to wonder.  And since you´re doing your own research, you´ve got to have some peace of mind as to whether this bleeding is important or not.  

So, perhaps you might want to write to Deborah and ask for Dr. Akin´s email.  This is what I would do.



Good luckl

Lisa

I find that, for mild bruising, increasing my intake of vitamin K (through food or supplements) and vitamin C daily (500 mg. Ester C, twice a day) helps.  I love leafy green veg, so it's easy for me to add them.  I'm not saying that will work for more than a mild problem.  In my case only, I think it's heparin, and mast cell stabilizers are the best help.

I've read some articles about increased scarring, and mast cells are definitely involved.  After a hand surgery, and once the wound healed over, I used a product called ScarGuard, and the doctor was surprised how well the would healed.  I don't know if that was the reason or if it was the prednisone I took before and after the surgery or something else.

Wendy,  I hope you feel well enough sometime soon to see Dr. G or Dr. A.  Too bad the doc in SLC didn't turn out to be a real specialist.  There's just no one in this region who's an expert.  When the only knowledgeable hematologist in Denver passed away, he was replaced with someone who doesn't know anything about it.  There are a couple of allergists in Denver who are knowledgeable about certain aspects, but they're not hematologists.  Frustrating!

Yay!!!!!!!!  I've made connections from people's posts on this forum, too.  Love it when that happens.

I just saw an article that said masto patients can have trouble absorbing enough vitamin K.

Here's my favorite recipe for kale, and I prefer the Italian kale (also called Lacinato or Dinosaur kale) or rainbow swiss chard, but any greens will do.    

Put greens into well-salted, boiling water until just tender.  Save some of the cooking water.  Shock greens in ice water.  When cool, squeeze out excess water, chop coarsely, s&p to taste, and mix in good olive oil so the greens are shiny, but not too oily.  Sprinkle just a little cooking water over sliced, crusty Italian toasts and put greens on the toast.  If you can eat it, shave some parmesan or pecorino romano cheese over the top.  (I do better with pecorino.)

Supposedly vitamin C strengthens the walls of the arteries and veins and keeps them from leaking or tearing as easily.