Paging Dr. House …

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

11 Replies to “Paging Dr. House …”

  1. There are still possibilities to examine:

    HUGE DISCLAIMER:

    The following is from Beth, our volunteer patient advocate and medical theorist who claims to be merely “a physiologist who doesn’t know medicine” and contains her opinions and those of “an MD who hasn’t seen the patient and is hearing everying second hand.”

    I just had another talk with the other postdoc (the one who actually has an MD). He is really keen on the idea of an endocrine/bone disorder. He hasn’t been keen on anything up until now. If you grew two inches—have developed scoliosis—that is indicative of major bone remodeling (the scoliosis could also be due to the stress of putting on weight so quickly). This could have originated from the bone—a problem with the actually living portion of the bone—it is highly innervated, and may be why you had pain and fatigue as your first symptoms.

    The bone disorder could also be due to renal problems or at the level of a gland—say the pituitary. He doubts the vitamin D deficiency is the primary issue here—but instead is probably a symptom of things that have been developing for years.

    It is good that we have ruled out cortisol as a reason for swelling—now they can focus on renal! Have they collected any urine to check for renal indicators? Things can spill into the urine long before they shows up in blood work. You are clearly having problems with calcium metabolism and apparently calcium can majorly impact your metabolism.

    We both stand by our vote of “endocrinology.”

    I will be reading more into these things.

  2. You want Stuart Little’s father as a doctor???

    I know I keep saying this, but I’m still praying for you. How awful this situation is. (I think I just constructed that sentence like Yoda!)

  3. Nichelle has an appointment Monday with the new endocrinologist to whom her doctor referred her. That was about 3 months sooner than I expected she’d get in.

    She has an appointment with the new rheumatologist on Thursday, April 6.

  4. Added a few notes to the original post about discouragement, doctor’s listening, and clarified that we don’t know when the height change happened. Maybe Nichelle just told me she was 5′ 4″ tall when we met so I wouldn’t be feel threatened by her (I’m 5′ 3″) …

  5. I’ m still leaning toward Lupus, a very difficult to diagnosis disease, do they know if you are spilling protein into the urine the kidneys could also be retaining the protein thus the weight gain, which in Lupus is not always common but does happen.The pupura(the freckle like spots the have grown) should be scraped for biopsy. As far as growing 2 inches did they measure wrong? I’ll keep you guys in prayer, if there is anything I can do let me know.

  6. Our current payout for guessing the ultimate diagnosis correctly is a case of Moxie. Our strongest contender had been Beth, who suggested Cushing’s Syndrome, but the tests for Cushing’s were negative, despite a very strong symptom match. I will admit that a number of symptoms typical of Lupus are present, but we will be asking about it.

    They definitely didn’t measure the height wrong, but we don’t yet know when the growth occurred. There’s anecdotal evidence that it occurred sometime between fourteen and two years ago. We’re trying to narrow it down.

  7. Nichelle’s Bet:

    Nichelle insists that I change the prize for a correct diagnosis if she is correct. I told her, “Too bad.” Ready? This matches even more closely than Cushing’s Syndrome:

    Hashimoto’s Thyroiditis.

    Hashimoto’s Thyroiditis is a form of Hypothyroidism (low production of thyroid hormones). Here’s the symtom list from Johns Hopkins:

    • fatigue
    • depression (not a current symptom)
    • sensitivity to cold
    • weight gain
    • muscle weakness
    • coarsening of the skin
    • dry or brittle hair
    • constipation
    • muscle cramps
    • increased menstrual flow
    • increased risk of miscarriage (unknown)

    The few published symptoms that don’t match include: “No symptoms,” goiter, lump at front of neck, protruding eyes, and slow pulse; on the other hand, additional matches include: mental slowness, forgetfulness, and physical slowness, among others. Symptoms we don’t know either way about are low thyroid hormone level and definite hypothyroidism.

    It’s also interesting that some patients with this condition can sometimes test normal or close-to-normal for thyroid function, making diagnosis difficult. The general symptom list for hypothyroidism is similar, and equally well-matched.

    Nichelle has been tested more than once for thyroid function, but we need to check into what specifically was tested.

    We shall see …

  8. Nichelle is having a bad day today. Despite taking frequent naps, she’s unable to move for more than a few minutes, and in a lot of pain. It’s sad.

    Today we started tracking her body temperature: Every reading was low, most by more than a degree. Because food and sleep can affect temperature, we’re not relying on one day’s observations, and we don’t have medical office records on hand for vitals, so we don’t know if this is a pattern or not. A temperature that is consistently below normal would be a strong indicator of hypothyroidism of some type; conversely, a consistently normal temperature would be a contraindicator.

    If this is hypothyroidism, it would have one disadvantage over Cushing’s: It would mean the fibromyalgia symptoms were properly diagnosed, and there would be hypothyroidism on top of fibromyalgia, which would have a less positive treatment prognosis than Cushing’s misdiagnosed as fibromyalgia. :: sigh ::

    We also heard from the person who recommended the practice we’ve switched Nichelle’s medical care to, and he advised against using the particular physician in the practice Nichelle had an appointment with. Nichelle’s negative experience seems to be well-founded, but at least we got the specialist referrals.

    Onward …

  9. Another endocrinologist visit this afternoon. Nichelle is determined to be heard.

    Nichelle went to church yesterday morning, but it was really tough on her. There’s no real win in this situation, because I don’t want her to have to stay home, but attending more than one service in a row leads to severe pain and being incapacitated.

  10. Okay, this is somewhat on-topic, but for those of us in the middle of watching the two-part “House” episode that finishes tonight, we have a rare opportunity. We can actually try to diangnose the disease that the police officer (now deceased) and Dr. Foreman have contracted.

    Here are the symptoms (ruling out 1 or 2, such as carbon monoxide poisoning, that the police officer had alone), if I’m remembering correctly. The symptoms progressed quite rapidly (over 1–2 days):

    • Giddiness
    • Fever
    • Clotting in the brain
    • Involuntary movement/contractions of the hands and arms
    • Blindness (of which the patient was unaware at first)—the brain was receiving visual signals, but not able to process them
    • Severe pain
    • Multiple organ failure

    (There a good discussion on this episode here, with excellent medical analysis: http://politedissent.com/archives/1220.)

    This appears to be a disease that can be communicated relatively easily from person to person.

    For those who have wondered, Wikipedia suggests this site (one post of which is already mentioned above) for an analysis of the medical accuracy of “House” episodes.

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