Wilcox Family BLOG

Today I had my appointment with the new rheumatologist. He’s requesting all records from three different doctors. I was given a new pain med and taken off one that I was recently given by the ER doctor (although I’ve only taken it once). I will have a follow-up appointment in four weeks.

He has no explanation for several of my symptoms, but states the other problems that I’m having is fibromyalgia. Here’s a great site to find out more about fibromyalgia: http://www.fibromyalgia-symptoms.org.

The doctor today, too, agrees that the other problems that I’m having are endocrine. I am also waiting to hear back from the new endocrinologist. He wanted to go over my tests results from the first endocrinologist, who claimed that I didn’t have an endocrine problem!

I have been checking my temperature for several days now and the highest it’s been is 98.0 and the lowest was 96.3. The typical range in 97.2 to 97.7.

Next week I have an appointment at the pain management clinic.

Waiting, praying, hurting, and crying, but through it all we know God is ultimately in control and already knows the outcome. Thank you for your continued encouragement and prayers.

Nichelle was very impressed with the endocrinologist she visited today. She described him “as thorough as Dr. Rescigno,” which is a huge compliment.

Dr. Bhaghayath took an interest in everything Nichelle brought in (unlike the last two doctors she has seen), including things that seemed “off-topic,” such as the bone scan results. He was amazed by the photos showing the water retention. He reviewed our symptom list, and commented that Nichelle had “a lot of things going on.” He wanted to know if Nichelle had a family history of thyroid problems. (Getting a family medical history for either one of us is a rather amusing undertaking.)

Nichelle did ask him to confirm any connection between the vitamin D deficiency and the serious symptoms she is now experiencing. As we expected, he said they were “totally separate,” but Nichelle wanted a second opinion.

Unfortunately, some critical records were not sent over, despite the fact that Nichelle checked on them this morning. His concern is that (just as Beth has suggested), critical endocrinology tests were missed, and only the cursory levels were measured, especially for thyroid function.

He’s going to examine the records, after Nichelle kicks some butt to get them sent over, and call Nichelle back. (This appears to be a failure in the medical records department, rather than the doctor’s office, for a change.)

This is the kind of doctor we need.

Nichelle asked me to post some notes from today’s somewhat discouraging doctor’s visit. This was an apointment with a new doctor, who, we hoped, based on recommendations and screening, would listen carefully to the symptoms and be determined to find a solution. Instead, we are being asked to visit specialists in fields we have already visited, and have little to be encouraged about.

Here’s what was observed at the appointment:

• Nichelle is now 5′ 6″ tall—two inches taller than the last time she was measured (some years ago; one doesn’t expect to get taller after the age of 25 or so). (Note: We don’t have a good benchmark for when this growth occurred; we’re trying to find out.)
• Today she had a 101.2° fever, and was unaware of it. (When’s the last time you ran a slight fever and felt no different than any other time?)
• Her blood pressure was slightly elevated.
• Her weight has reached a new high.

Her new doctor wants her to see another rheumatologist, and another endocrinologist, and work with a pain management center (Southern New Hampshire Medical Center has one).

He believes the hair loss is an endocrinological problem. (Our endocrinologist who is treating Nichelle for vitamin D deficiency had no explanation for this particular symptom.)

The new doctor concluded that successful pain management would allow exercise, and that would lead to weight loss, despite the fact that the onset of these latest, ever-worsening symptoms that struck last fall occurred—contrary to typical fibromyalgia—during a long period of significant daily exercise combined with careful diet, which, incidentally, did not produce any weight loss.

Nichelle really feels like yet another doctor is not truly listening to her. I’m not completely convinced that’s the case, because he did immediately recommend two specialists and the pain clinic, so it’s not like he’s saying nothing’s wrong—it’s just that we can already discount one of his conclusions and he’s not really willing to listen to that (yet). The biggest problem is we have a neurologist who has a marvelous doctor-patient manner, and just projects a vast amount of caring, even when he is hearing about symptoms he can’t correct in his speciality. Nichelle called him yesterday, because he wanted to be kept informed of her overall medical issues—that’s not very common in a specialist. So, just about every doctor we’ve ever had seems inadequate in comparison.

I wanted to quote Job 10:2–3, 8 for this post, but Nichelle wouldn’t let me, so I’ll go with some verses from Psalm 30 instead, although when I heard these this morning (especially verse 2) they made me cry:

¹I will extol Thee, O LORD; for Thou hast lifted me up, and hast not made my foes to rejoice over me. ²O LORD my God, I cried unto Thee, and Thou hast healed me.

¹⁰Hear, O LORD, and have mercy upon me: LORD, be Thou my helper. ¹¹Thou hast turned for me my mourning into dancing: Thou hast put off my sackcloth, and girded me with gladness; ¹²To the end that my glory may sing praise to Thee, and not be silent. O LORD my God, I will give thanks unto Thee for ever.

Psalm 30:1–2, 10–12

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.
• Dizziness
• Nausea
• 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.