Tuesday, December 12, 2017

What’s new with me?

I’m looking correctly, and I may not be, my last update with you guys about my health was in July. Oops!

So as you know, in June some my neurological problems were finally diagnosed as a one in a million disease, Stiff Person Syndrome. About a month ago I had a 4 day loading dose of IVIG (Intravenous Immunoglobulin). IVIG is composed of the antibodies of over 1000 blood donors! It is used both in autoimmune diseases, and immune deficiencies. About a week and half later, I realized I was having an easier time walking. It was amazing. My wide based walk that had been compared to a very pregnant lady or cowboy was changed. Strangers were no longer staring at my feet. As I walked by store windows and saw my reflection, I looked NORMAL. So I am so happy to say that IVIG worked for me in that respect.


In the meantime, I got some other surprising news. A while back I had my lab tests come back with a very elevated copper level. We agreed it could be a red herring or a lab mistake, so we redid it. Only it came back extremely high again, showing copper toxicity. Around this same time, I started suffering from upper abdominal pain. After a week of it not going away I went to the walk in clinic who sent me to the ER. Turns out that in the last 6 months, my liver has become riddled with lesions. They say over 12 on both lobes, I don’t know if they mean that as a total tally or separately. The masses are one of two things, both benign: Angiomyolipomas, or Hepatic Adenomas. I would have liked to do a biopsy now to figure out what they are and treat it in case it's the cause of some of my issues, but the doctor I saw felt it was a risk since the tumors are partially vascular. Interestingly enough, he thought that maybe a diseased liver is what is causing my high copper. It could also be causing my loss of appetite, where malnutrition is slowly beginning to show itself in lab work.

And that’s all I’ve got for now. Thank you for caring if you read this! It’s truly appreciated.





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