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.
“Another Dead End”? Perhaps with THAT doctor!
One of the things I’ve learned, it’s to be assertive with my health care. I was misdiagnosed at my first doctors appointment and was led to believe that the lump on the side of my neck was nothing major. If I had not gotten a second opinion, I’d be a lot sicker today. I highly suggest that you seek yet another opinion. Have you tried the doctors in Boston?
I would also like to suggest a book called “The Maker’s Diet” written by Jordan Rubin. He had Crone’s disease and this diet was the only thing that cured him. The doctors couldn’t do anything for him.
I didn’t realize your health had gotten worse until Rodney sent me to your family blog. I will put you back in my prayers.
From Your Sister in the Lord and with Love,
Shari Gagnon
Dear Shari,
I’d like to thank your husband for directing you to the blog. It’s also an encouragement to me that people are keeping track of things and passing the information on. It’s so good to hear from you. How have you been?
I have an appt. next week with a new PCP. I have documented the health issues and have pictures of the changes. The receptionist was impressed with that. We will see what he says, then if nothing comes of that, we’ll be searching for a specialist in Boston. Thank you for the book suggestion idea, the encouragement to keep on searching for answers and of course for your prayers. They are very much needed and appreciated.
Love and Blessings,
Nichelle
Nichelle, We happen to have an extra copy of The Maker’s Diet and I’d be happy to send it to you.
Just let me know! 🙂
Please don’t let his lack of interest in diagnosing you be too discouraging. At least he was honest in that he isn’t interested in diagnosing you. The first neurologist I saw “dumped me” and refused a follow-up appointment after a few preliminary tests tests came back negative- if it wasn’t obvious- he didn’t want to deal with it. The opthalamolgist I had with the partial blindness and double vision just straight came out and said “I’m not going to diagnose you”. After I got into to see the specialist in Boston- she diagnosed the eye episode as optic neuritis and was interested in diagnosing the underlying disease even if it took time.
If many of us failed to do our jobs as many MD’s do- we would be fired- they just get more patients to screen and pick the easy ones.
I’m still praying for you fervently!
The low vitamin D level was confirmed by the most recent blood test. Nichelle will be on a very high, once-a-week dose of vitamin D for twelve weeks, and will be retested.
This is a real problem, but doens’t explain any of her currently problematic symptoms, although it could be producing some pain from bone loss. (Vitamin D aids in calcium absorption.)
That makes me think this may turn out to be MORE than one problem, which could be muddying the waters in finding a single diagnosis!
And your friend was right about not getting discouraged with the opinion of one doctor. When I had my first sensory seizure from my cerebral aneurysm, one doctor said it was anxiety and another said I was being poisoned by having a well instead of public water! [One apologized after the brain surgery and the “anxiety” guy I took pains to NEVER see again. When I had asked him if it was “anxiety” then why I was having trouble writing, he replied, “Because you don’t want to.” And this from a man who had just met me!]
Ha, ha, ha. I’m grinning while imagining a doctor accusing BMT of not wanting to write!
Can you imagine him treating Joni Eareckson Tada: “Well, the problem, Ms. Tada, is that you don’t want to be able to move your limbs.
Nichelle is in really bad shape today. Yesterday she tried a few hours of shopping (less than 2 hours on her feet—it was mostly just driving) with our dear friend Juana Evangelista del Corazón de Jesus Gonzalez Guerrero de Quinlan, and it was more than she should have. She was in severe pain by the evening. Today she was up for a few minutes and then went back to bed, continuing the severe pain and difficulty moving. Also, the swelling was markedly worse than it has been in the past week or so.
I just came across your weblog in my own search for more answers.
I am not aware of medications being used and their durations. I was on medications that caused the same symptoms you described.
SSRI were prescribed when in fact I had Valley Fever. On the SSRI I experienced all the same symptoms. Its taken almost six months off all medications to realize how sick they actually were making me.
None of the many many doctors nor pharmacist put it together.
I have had some enlightening experiences along the way that I am sure the good Lord intended for me to learn. It takes alot of looking and connecting information bits and pieces to figure it out. Once I did, it made sense.
I have to be very careful undergoing tests because of the medications they use. I am now looking into how the body processes medications and why some people (like myself) seem to become more ill with medical treatment and testing.
There is something called the P450 system ( has to do with the liver) and it explains how medications are processed through the human body, or not processed. At this point it seems very complicated yet I can see a pattern with the medications I was prescribed, and having a better understanding of how really complicated these medications are to the human body.