It has been a wild month or so.
I had a lot of weird and unpleasant health symptoms going on since roughly Thanksgiving, that got markedly worse over the past few weeks.
The first problem was a flareup of my autoimmune disease dermatomyositis. I got progressively weaker until over the holidays i had trouble lifting my bath towel over my head to dry my hair and was also having occasional trouble swallowing. My rheumatologist put me on high dose steroids, started me on a new drug called methotrexate, and resumed my IVIG infusions every 2 weeks for now (which we had discontinued in Oct. to test if I was in remission--clearly I am not). I am feeling slightly stronger already from the steroid treatment.
Then in early January I had some bloodwork done which revealed high calcium, low phosphorous and elevated parathyroid hormone levels. Here's what I learned today. I saw an endocrinologist who says I definitely have hyperparathyroidism, which is a benign growth or enlargement and overactivity of one of the 4 parathyroid glands (totally different from the thyroid gland). He has arranged a specialized scan of my neck to see which one it is. That should resolve the problem, which occurs in about 5% of perimenopausal/menopausal age women. Symptoms are abdominal pain, muscle weakness, kidney stones (I have one already) and bone thinning/osteoporosis due to calcium loss. After the problem gland is removed I will have a bone scan to see how much bone thinning/osteoporosis has occurred, especially when combined with steroids which also cause calcium loss.
The endoscopy revealed gastritis (inflammation and lesions of my esophagus and duodenum and stomach inflammation (the latter could be due to or exacerbated by the meds I am currently taking). For now he put me on a prilosec type medication and said no drinking alcohol. The colonoscopy revealed multiple lesions in numerous areas of my large intestine and he did numerous biopsies. The pathology report revealed that it was ulcerative colitis, and a stool test showed it was being caused by the bacteria C. Diff. I had been tested for various bacteria and parasites previously, but not that one.
I couldn't believe that I had developed 3 separate health problems. The colonoscopy surgeon emphasized that I have a complex set of health issues, and that I need to take really good care of myself, get as much help and as little stress as possible, because I could get sicker. Cheerful viewpoint, eh?
In the few weeks since then, I have taken a round of antibiotics to kill the C. diff (which is normally present in our bodies but I had developed an overgrowth). Don't know if I'm completely healed yet but I feel good.
This morning I saw a surgeon about the hyperparathyroidism. The enlarged parathyroid gland was able to be visualized on 2 different scans, which will make it easy for her to remove, so I scheduled that surgery for Feb. 16. It is outpatient and I will need about a week to recover.
Meanwhile, I continue to get IVIG infusions every 2 weeks for the dermatomyositis. My strength is somewhat better but still not normal.
Boy, do I miss my wine and martinis! Otherwise, I feel SO much better and am so much happier. I am so blessed that these problems were so easy to fix.
Not Having Fun
4 weeks ago