So, living with what I just thought was a flare up I saw my Hemotologist for my enlarged spleen. That part of the day was as expected. Hey doc check it out, you can see my spleen and I can feel it… doc’s response is basically we don’t know what all is going on so we are not going to remove the swollen and painful spleen. Uggggh.
Things did get interesting, and admittedly a little overwhelming for me. I was sent to see the neurology department for a consult. First thing to comment on is how funny it is that they could get me an appointment on the same day, something I couldn’t do myself. Obviously my history is well known to the neurology doctor and a brief conversation and them some testing. So, everything I thought I knew was shot down and I left the office mentally beaten and scared. Yeah I hate to admit that but as I was told, one occurrence okay, second occurrence we now have to plan on a lifelong care/treatment plan. The Neurologist basically explained it as; first diagnosis was accurate but with the second occurrence, and the severity of this occurrence, the cause of the swelling is now more suspect and has to be diagnosed. Words like MS, brain lesions and such where thrown around. The link to some sort of immune deficiency was mentioned, which is hugely frustrating since when all of this first started I was told I had CVIDS (Common Variable Immune Deficiency Syndrome) but no firm diagnosis was made.
As seems usual the doctor had a list of things to do, but nothing definitive and I walked out to rush back to the other building to get a CAT scan ordered by my Hemotologist. I am sure I will hear back regarding the results of that test (I can confidently say they will probably mentioned enlarged lymphnodes or something regarding potential nodules in the chest area all the reasons they use to not remove my spleen) but I am most looking to hear when the Neurologist’ proposed steroid treatment will begin.
I did this before and the five days of IV steroids is rough but if it can relieve the discomfort and help me to walk easier its worth it. I guess I sit and wait for the two doctors to confer and get back with me.