another medical uptate...

Here is an update on my Dr appointment in {P} that we went to the end of last month. (This is what I emailed out to my family after the appointment)

We met Dr. {D}(a rheumatologist) in {P} on Monday morning. He was very thorough and nice. He went over the entire ordeal and asked lots of questions to understand the order of things and what I went through.

He asked me a few times if I had been tested for TB and if I knew what sarcoidosis is. (my local rheumatologist Dr {M} had asked me if I knew what sarcoidosis was, but that's as far as he pursued that) He was very good about explaining all my previous diagnoses. He asked if the cultures taken from my breast had been tested for TB. (I didn't know, but after asking the breast surgeon to fax over lab results, we find the cultures had been tested, but the results hadn't come back yet) Apparently there is a family of different types of TB. The one that most of us know about has symptoms like coughing blood. He was looking for a TB that is found as infection(i.e. my breast) I have emailed the breast surgeon to see if the test results have come back, but haven't heard back yet.

Sarcoidosis is probably what I have. It is defined on the hospital website as:

Sarcoidosis

What is sarcoidosis? Sarcoidosis (say "sar-koy-DOH-sus") is a rare disease that creates tiny lumps of cells throughout the body. These lumps, called granulomas, are too small to see or feel. They can form anywhere on the inside or outside of the body and can cause permanent scar tissue. They often form in the lungs...

Sarcoidosis

Sarcoidosis is a multisystem disorder that most often affects individuals between 20 and 40 years of age. Females appear to be affected more frequently than males. Sarcoidosis is characterized by the abnormal formation of inflammatory masses or nodules (granulomas) consisting of certain granular white blood cells...

Dr {D} explained it as my body is have a civil war within itself. I have an over active immune system and it is fighting with itself. The methotrexate(the med I am on) should clear this up.

He had me get an xray to see if he could see any granulomes in my lungs.
Basically, nothing changes in my treatment whether I have it or not. Methotrexate is still the best medicine for decreasing the inflammation. It sounds like once the inflammation is is gone, so is the sarcoidosis and so then I have cured(or so he says)
If I have TB(which I don't think I do) then the treatments change...

Dr {D} changed my medicine dosages a bit. He is tapering me off the prednisone faster than before and increased the methotrexate by 2 1/2 times. I am ok with this decision. I am happy to be off the prednisone faster and hopefully the metho will get rid of my mass faster. It still sounds like it will be atleast a few months though, since the metho doesn't even start working in my body for 6-8 weeks. As of today, I have taken 5 weeks of metho. (update: I have now taken 8 weeks as of Oct 19)

Hopefully this is a clear explanation of how things went. I am just waiting to hear about the xray and if the TB results have come back yet.

Feel free to ask any questions.

This is the next email I sent out about a week later.

Hi all. Here is another update: I have heard back from Dr. {D} about the test results and the xray. He says the blood work came back normal, as did the xray. Which technically means I don't have sarcoidosis.(because there are no signs of it in my lungs) However, he and I both feel that the circumstantial evidence still leads us to believe that I do actually have sarcoidosis and the course of treatment will stay the same.

That being said, I do need to clarify something I said in my previous email. Sarcoidosis is not "curable". It is however, very treatable and once the symptoms are gone(probably within the next 1-2 years) then I will be in remission and may or may not ever see/feel symptoms of sarcoidosis again. 

Thanks to everyone for your sweet notes of encouragement, I appreciate each one. I currently feel great and am grateful for amazing Dr's who are gathering around me to work through this weird medical trial.