Melissa,

I had 2 spots biopsied back in December by my long time derm, and they came back neg. I think I will probably seek out a more knowledgeable derm because I have different types of spots in different places and perhaps one of the other types would show mast cells.

All of these dr appts are really hard to fit into my family schedule and now that my kids are almost out of school I'm wondering how I'll do it.

I saw a hematologist last week and he ordered a head to pelvis CT with contrast (scares me) and a bone marrow biopsy from each hip. The tests are tomorrow morning. I'm not scared of the pain, but I'm scared of reacting to the contrast and lidocaine and versed. He did have me take 50 mg prednisone today and 50 more 1 hr before the CT along with 50 mg benadryl. I wish the prednisone made me feel better but instead I'm feeling worse with tightness in my neck and face. I can't wait for tomorrow to be over.

Kristi

Hi Kristi,

You may not see this until after your tests, but if you're following the REMA protocols, you should be okay.  Prednisone can make you feel strange, but if you think you've reacted to it, be sure to tell them tomorrow.  Highly unlikely, though.  

As you probably already know, stress can also make you feel bad, and I know I was very stressed before my tests.  If you feel stressed in the morning, ask for some Xanax or Ativan.  You shouldn't have to be uncomfortable in any way.

Good luck, and let us know how you did!

Lidocaine, fentanyl, and versed are all usually tolerated by mast cell patients.

Thanks for the encouragement and words of wisdom, Ladies! The tests today were a piece of cake. I did premedicate with the prednisone and benadryl and added my own zyrtec and pepcid for good measure. I didn't have a problem with the oral or IV contrast and I also did fine with lidocaine and versed used during the BMB. That versed is goooood stuff! I don't remember any part of the biopsy, but my husband said I kept repeating "are you finished with the aspiration part" over and over even after the guy said yes. They said I flinched a bit when they aspirated the fluid but that was it. Now I'm just sore which I can deal with. They did a biopsy from both iliac crests (rear pelvic bones). I can't remember why? I meet with the doc on June 1st for the results which happens to be my birthday. I'm hoping that's a good sign!

Fuchsia, thanks for the reminder to get copies of all tests. Most of my docs are part of a large network linked to our big teaching hospital and they have online records that I can pull up and print. It's so nice to manage them and easily print them myself. My derm isn't part of this network so I need to get those copies.

Joan, stress is a huge trigger for me and also a factor that makes my reactions to other things worse. I did follow the REMA protocols but I didn't take any xanax because I knew they were giving me versed during the BMB.

Melissa, I will check to see if they checked for TMEP. I'm not sure if they used the correct stain. Sometimes I feel like if it weren't for all of you, I'd never get to the bottom of this or even have the correct tests.
Thanks for your guidance.

Kristi

Hi Kristi!

I'm so glad you did well with your exams!!  You probably will always be able to handle contrast well, but as a precaution you should be premedicated and it should be done in a hospital setting as a safety measure.  

As to the bilateral bone marrow biopsy, there is research supporting that this is how it should be done.  Joan's right, the research shows that a uni-lateral biopsy could indeed miss it.  However, depending upon your case, a bi-lateral may not get it either for some of us who do have the neoplasm may have a certain form which grows so very slowly that it's very difficult to find the neoplasm itself!!

So, a negative bone marrow biopsy does not throw out masto.  In my case it did not.  We had to use the other pathological changes to know that this is indeed my case that I do have SM, but it's not mature enough to show the neoplasm and it's going to take years in order to do so.

Lisa