Bone Marrow Biopsy, Ct Scans, Stairs In My House

[Godsgal]

Hello,

I'm going through quite a lot. As ya'll know on here, I have a 1 year old and 4 year old. My condition is causing me to be VERY LIMITED in what I can do and my live in nanny is helping me a lot. Well she just told me she cant do the job anymore but will work with us on finding someone new. I live in a house with stairs which further exacerbates my condition. I have POTS/dysautonomia, and was just diagnosed with UP/cutaneous masto.

I have high methyllhistamines, normal tryptase, normal CBC's. Skin biopsy showed high mast cells, spindle shapes.

I need advice. My local hematologist wants me to have a CT scan of my chest, abdomen, & pelvis. Then he wants to do the bone marrow. After that, he wants to try to get me into NIH. I'm only on Singulair, Claritin, and Pepcid twice a day. He won't give me any more meds. I'm so stressed I live in South Florida. It takes 6 hours to get to Mayo to Dr. Candido Rivera. And a plane or train trip to Boston or Virginia to see the experts seems very scary right now.

My husband thinks I should just get the BMB with the local guy and repeat if necessary. I feel like all the CT scans are a bit much. But then again I have no idea b/c I'm new to learning about the mast cell stuff.

Is it really necessary to try to go to Mayo or the experts for this? Would I need to premedicate for these scans and bmb?

I'm very overwhelmed and stressed with living in a house not meant for me and a nanny that's saying she's gonna leave me with kids I can't take care of, especially with stairs.

My head is spinning!! I don't know where to turn except for advice here and to God. I'm seeking answers. I don't know if I should be trying to move out of this place to help myself and my caregivers b/c of these stairs, or traveling to Mayo or beyond, or going local so as not to stress my family anymore. My 4 year old tells me everyday he doesn't want me to leave him and go to the hospital (probably b/c I've been hauled away by the ambulance so much and at the doc). My son is having daily tantrums of rage. My poor husband is so stressed dealing with everything. GOD please help me!!!!

Any thoughts????

[juliegee]

Hi Jared-

I have previously shared my advice re. the BMB and need to find a mast cell specialist; I won't repeat at the risk of sounding like a broken record

But, I do have a recommendation should you decide to have CT scans done locally. Here is a download from TMS re. Emergency protocols. About 1/2 way though, you will find pre-meds that need to be taken before radiologic procedures. http://tmsforac.ipower.com/documents/Binder1.pdf

I pray that you'll find what you need and be ready to receive the answers.

Hugs-

Julie

[Guest tearose]

I am sorry that you have so much to deal with at one time.

I suggest you make lists and prioritize. Ask what the pros and cons of each decision is too.

For example, will the bone marrow biopsy show you something that is treatable? Then you may want to do that.

As for stairs, I was so much worse when having to do stairs that we actually did decide to move to a no step home. It took two years to find one so you can start looking but may also have to wait.

I recall tossing laundry down the stairs in pillowcases and when I was able to do it, having my husband take it back upstairs. Be creative about saving energy and lessening symptoms. Take some shortcuts like getting easy to serve foods for the family. When you can, rest on a nearby sofa while the children play. Take time to do whatever activity you can manage to keep from getting deconditioned too.

As for the pros and cons of Mayo, MN...I think it is the best place I ever went! They took a whole body approach and did in two weeks what would have taken many months here on the east coast.

As you well know "godsgal" the best answers are already inside you! Be still and listen for the answers!

with love, prayers and support,

tearose

[Sarah4444]

I know how you feel.

With regard to the BMB, I may have to end up making the same choice - except to see the mast cell specialist I'll have to go to the US. It's a hard decision. If you do decide to go to the local person, make sure they are fully aware of the special aspiration, staining and genetic testing procedures that have to be done, so you don't have to end up repeating it.

And as Julie says, make sure they know that traumatic procedures and CT contrast cause reactions in many with mast cell disease, so they are prepared to help you if this occurs (and so you are pre-medicated).

I have had less trouble with stairs since I started on the meds combo that has allowed me to do gentle daily exercise. I still would not be nearly well enough to look after two little ones (I can barely look after mine and they are older), but if you arrange another nanny, you may still be able to recover enough to handle the stairs, so maybe selling your house isn't necessary yet. Also, imagine how hard moving would be.

Hang in there, and please keep us posted.

[issie]

I did move into a house with no stairs. But, I think that the stairs were actually beneficial to me as for keeping me in better muscular shape. I didn't do them every day though. I lived in an upstairs apt. If I had to do them everyday - don't think I could've. I'm much happier in a single level. As others have stated, if you can modify what you do. I think if you keep trying to remain as mobile as possible it is better than just sitting down. I had to sit down for over 5 months, in a wheelchair - because of a horrible break - and it made EVERYTHING worse. The POTS got worse, I got weaker and nothing improved from sitting down. Now, I'm trying to get a little more active - I can walk now - so hoping that things will improve.