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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