Nichelle just finished with her second endocrinology appointment. She was carefully prepared, and her questions were answered frankly and accurately.
The one test that continues is for vitamin D deficiency. This is a fairly common problem, and could be lowering the calcium absorption, which can lead to bone pain.
However, that explains almost none of the symptoms Nichelle has.
The endocrinologist told her that, after having two clearly normal 24-hour free cortisol tests, Cushing’s Syndome is definitely not the problem.
Nichelle explained that her health has been cyclically poor for the past seven years (with some symptoms apparent even earlier), but that the past year has been dramatically worse. She asked him what explanation he can offer for her apparently-endocrine-related symptoms: Severe swelling/fluid retention that continues to worsen, as well as the pain and other symptoms described.
He has absolutely no explanation for the symptoms. When Nichelle asked if an endocrinology specialist or clinic in Boston might help with a diagnosis, he suggested Nichelle go back to her primary care physician for more exploration, and recommended against seeing another endocrinologist.
So, these are the symptoms for which we have no treatment possibilities at present:
- Severe edema (fluid shift) with weight fluctuations of 5 lbs. in the course of a day.
- Significant weight gain (over 65 pounds) in the past year, despite healthy diet and a significant daily exercise regimen (until last fall, when exercising became impossible).
- Constant burning sensations, especially in the hips.
- Pain. Moderate pain nearly always. Episodes of severe, stabbing pain on a daily basis. More than one episode per month of pain as severe or more severe than unmedicated childbirth. Stabbing, burning pains in collar bone and ribs.
- Difficulty walking or standing.
- Rapid deterioration of “normal” health over the space of 1/2-hour (normal as defined by the current baseline: still not very good, but able to function with only minor or moderate difficulty).
- Extreme discomfort in having anything touching the skin on her arms.
- Pins-and-needles sensations all over, especially the head.
- Periodic cognitive difficulties. (This is the only symptom that has been less severe than a year ago, we believe because of partly successful treatment of sleep-disturbing migraine pain.)
- Sudden or prolonged exaustion.
- Severe sensitivity to having anything cold come in contact with her.
- Feeling very hot or very cold not in conjunction with actual temperature. (Feeling extremely cold often immediately precedes episodes of severe pain.)
- Occasional inability to grip small items, such as table utensils.
- Inability to raise arms or hold an item such as a cell phone against her ear or face.
- Difficulty putting weight on wrists to support.
- Hair loss on the head, arms, legs, and hands.
- Purpura—small spots that look like dark freckles that are appearing all over the skin and slowly multiplying. The ones that are a couple of weeks old are now increasing in size.
- Severe pain in the bones of her wrists and feet, and in her collarbone.
- Stretch marks and skin discoloration over an ever-increasing number of areas.
- Low body temperature (1 degree or more below normal) most of the time.
At this point, I can only thank the many of you who are following this for your continued prayer, encouragement, and support.
The Lord provides strength beyond our human means. This doesn’t mean we (and especially me) are not profoundly affected by Nichelle’s illness. I’ve noticed my “highs” have gotten a bit lower, and I do spend a short time each week—usually on the weekend—crying from “significant sorrow/frustration,” (probably because I am at home more and less busy while at home) but I am not in despair, nor am I depressed, and this doesn’t affect my ability to enjoy life or enjoy God and His many blessings. Most of the time I feel what I can only describe as a “dull ache.” But, God gives Nichelle and I patience and hope when there is no human hope.