finally got to see a Masto Doc here in Colorado who believes after an initial review of my history that I do not have masto.  Although I didn't get the same brush off from Dr. Castells phone consult - she said she knows dr. dreskin and can work with him so I didn't expect this.  It really threw me because I thought, much like many of us, that I finally had an answer not only for me but for my son (we went through a possible leukemia scare earlier this year, ruled out, for now, but still don't have answers - having his pathology sent to dr. castells.)

This doc believes some symtoms maybe pre-menopausal related, and that could be true, but my younger years had many masto like symptoms (syncope, low BP, flushing) that have gone away as I got older, gained weight and increased my BP.  He did however order another 24 hour histamine and a tryptase but that's taken forever to come in.  

He also thought that while he knew my metablic bone doc was a highly respected specialist he didn't think that I should go through with the biopsy scheduled.  It was my bone doc who who is initially thinking masto in the first place.  He felt that my bone doc would not have the specialization to do it correctly for masto??? and that it should be done someplace else, like his own hospital.

Well tryptase still wasnt back yet (3 weeks), and because this is because of my over the top dense bones, I had a bone biopsy yesterday.  Bone doc also said that he would also need to go into the marrow deeply to draw properly for masto.

Now I need to wait.. didn't have presence of mind to ask how long to get results in (I think he sends them to mayo), but I need to go back next week to have stitches removed so I will ask when they call to schedule that.

But not being able to get up except for bathroom for 2 days is making me crazy.. also want a show and can't do that until Friday... Leads me to lying around just THINKING... which is making me flush ... also have been getting mild stomach pains just about every time I eat for the last few weeks... so I would just like to have an explaination other than I'm nuts.  I've always had a very high tolerance for pain and being sick.  Now I feel like I've turned into a whiney hypocondriac who's just too tired all the time.

sorry for the rambling... guess I just needed to vent...

Thank you all for your support and for the great information that you provide out here.  I always believed that information is power.. so here I am, empowering myself...

Cindy,

I am so confused. Why can't you get up? Why did you have stitches from a BMB? Did you have some other procedure or surgery done that I missed reading about?

Hi Cindy,

  Don't feel bad about feeling bad!  With what you're going through, no wonder you're frustrated and your stomach hurts!  If you're not already taking them, perhaps an H2 antihistamine might help (Pepcid or Zantac).  

  Something is not right about your testing.  Dr. Dreskin is affiliated with National Jewish Hospital in Denver, and they had my tryptase results within an hour.  (That's where I was diagnosed).  Tryptase is measured by blood test, so it should have been done with your other labs.  

  If you want to make a change, there is a doctor at National Jewish, Dr. Weber, who also sees a number of mast cell disorder patients.  The chair of the masto support group here is his patient, and she likes him very much.  I would think Dr. Castells will  work with him, too.  

  Your bone doctor sounds as though he knows about masto.  The one hematologist who treated masto patients at CU Med Center is no longer there, and he hasn't been replaced with anyone who is an expert in MC disorders.  

  Hope you get some answers soon.  If you don't mind sharing the name, I would like to know who your metabolic bone doctor is.  I've been looking for one, too.


 

Good luck Cindy! I was also waiting long for tryptase results (2 weeks) and there's only one hospital in entire state that's doing it! Thankfully, I should get all the other tests by Monday and then my hematologist will go through them with me.

So good luck! Please do keep us posted on the results, OK? I hope that it doesn't (still) hurt after biopsy?

Thank you Enko & Lisa!!!  great words of wisdom. and yes.. comedies it is...  I am thanking heaven for Comcast On-Demand.

Yes Dr. Dreskin has a great reputation in the masto community, so I will just wait and see.  I was just surprised he was so dismissive and yet still requested labs..

Joan.. I forgot.  my metabolic bone doc is Dr. Paul Miller of the Colorado Center for Bone Research...  I was recommended to him from separately both my Osteopathic doc and my Spine doc.  takes forever to get in to see him but he's supposed to be tops.  He just, a few days ago, hired a Nurse Practictioner who assisted on my biopsy, so now it's him, his PA and a new NP.. so maybe you can get in quickly.  Good Luck...

Thanks Lisa.. Much better now.. wasn't really painful, just really sore (didn't help that because co-workers were coming by to bring food, and family wasn't home, I started cleaning LOL)

sponge bath helped greatly... can't wait to shower tomorrow!!!

How are you doing honey?