[Note: I am keeping this updated via the comments. You will want to read them for the latest status.]
For just over a week now, the symptoms Nichelle has not experienced in years (for more than very brief periods of time) have been plaguing her again. These include sharp pains in various parts of her body, strange sensations in her head, abnormal exhaustion, and odd sensations of temperature. When these strike, it becomes impossible for her to lead the active life she has enjoyed for the past few years. At times the pain has even been bad enough for her to dig into our hoarded Vicodin supply. We call these pains “The Twins: Pain and Agony.”
For example, today she awoke in apparently perfect condition, and was able to get in a full Tao-Bo workout and her strength training. However, by mid-afternoon, her head began feeling foggy, and the pains had begun. On Sunday, she again began the morning fine, but by the end of our church service, did not trust herself to drive home.
A return of these dreaded symptoms was not something we anticipated. Nichelle has had the additional struggle of facing the possibility that this is back to stay for some unknown length of time.
Although we are certain that these have a hormonal component, we believed that a vitamin D deficiency was the cause of these difficulties. Nichelle has been on a high dose of vitamin D for the past few years, which appears to have kept the symptoms at bay. Nichelle had blood drawn on Saturday, and has an appointment to go over the results tomorrow morning. If it is a problem with vitamin D, it should be easy to correct. If that isn’t the problem, we would be back at the inexplicable and difficult state we were in a few years ago.
Clearly this is God’s path for us, and we will endeavor to learn from it and glorify Him, but please pray that Nichelle will be back to normal soon.
35 Replies to “Nichelle: The Return of the Twins”
Of course you are in our prayers. We love you!
Mark (and family)
Nichelle was sent to the E/R this morning from her doctor’s appointment to get tests done quickly. They transferred her by ambulance, because her neurological symptoms were so bad they didn’t trust her to be able to cross the street–which is exactly how far she had to travel.
She is back home now, and feeling mostly normal for the first time all day. I took the day off to help out.
Back on the roller coaster.
The woman who couldn’t be trusted to cross a street this morning, and who spent essentially all day in a fogged and very painful state, this evening managed a full strength-training workout. Nichelle appears to now have two settings: “uber” and “disabled.”
We are continuing to pray for the doctors to find and answer and that God helps you to have continued good days.
Today was a bit better. Nichelle worked out in the morning, as she does most days, and has been in only moderate pain and brain fogginess throughout the day.
Right now she seems to have two modes: “Disabled” and “Uber.” In Uber mode, she does cardio exercise, lifts weights, and generally keeps a schedule that would destroy a normal human.
We revisited our primary care physician this morning. More tests will be run. Nichelle’s Vitamin D level was not bad, though, so we are puzzled. She is showing several types of anemia. Further consultations will include a neurologist, endocrinologist, and hematologist. One plausibility is a bone marrow problem.
In addition to the psychological difficulty of being faced with oft-incapacitation, a return to illness presents other difficulties. Nichelle has already lost, at least until she’s cured, one of the weekly exercise classes she was teaching. This comes at a time when she was actively working to expand her teaching and personal training schedule.
Starting last night, things took a turn for the worse.
Nichelle had severe pain all night, and is now experiencing that and other neurological and physical symptoms.
We are waiting to hear back from our doctor’s office about the next step. They recommended the E/R again, but we want to be sure we are not pursuing and untamed ornithoid without cause.
It seems odd to be here again after so many years without any problems. One bit of encouraging news is that our primary care physician is very determined, and the fact that Nichelle was so healthy overall that we don’t have a plethora of symptoms to dig through.
Poor Nichelle. I feel very badly for you all. I will pray and please keep me posted. I don’t always get to read your blog. Love to all!
We will pray.
So, another day of pain yesterday, and more tests at the hospital. An MRI, ultimately, and not much else.
Nichelle’s iron level is normal, so that alone doesn’t explain the anemia.
Follow-ups will include (as soon as possible) neurology, hematology, and endocrinology. These specialist appointments can take time, although our primary care office is very good at getting us squeezed in.
Although we never got a complete confirmation of this, we have believed for years that most of these symptoms were caused by a vitamin D deficiency. After Nichelle started treatment for vitamin D, and stayed on a high dose of supplements, her symptoms disappeared, and she has enjoyed the amazing health of the past three years.
Nichelle’s D shows as within normal ranges, but on the low side. Thinking (as my sister has suggested) that her vitamin D level may be too low for her. So, we have pitched the idea of a vitamin D intervention to our primary care office, and are waiting to hear back from them.
When I left for work this morning, Nichelle was feeling fine, and just starting her morning cardio workout. The extremes of polarization in this are bizarre. I’m very impressed with her determination to get in her workouts whenever she has a few hours of normality. So far she hasn’t missed many. What am amazing woman.
Ha! I just saw Nichelle’s Facebook status message today:
“Nichelle Wilcox is NOT going to the ER today, at least not yet. Off to do cardio, train when I can.”
Thank you all so much for your continued prayers. I am currently 98% healthy…gotta get moving,never know when the craziness will kick in. Waiting to hear back from my pcp’s office. Hopefully will get my appt w/ the blood specialist made today.
But by noon, “Head problems and weakness in arms setting in.”
:: sigh ::
feeling fine, now.
ok, well….guess it’s pointless to keep w/ the smaller updates…they DON’T last..lol, sort of. 🙁
It wasn’t a very good weekend for Nichelle. Lots of pain and exhaustion. This morning brought a bit better mobility, but some of the infamous mental fog. We did have some great laughs, though, mostly about the “isometric exercises” she does when the stabbing pains hit.
On Saturday morning, we awoke to the sounds of all the kids fighting with each other. This is very unusual. I suspect having Mom sick has affected them in ways that aren’t always obvious.
Nichelle’s iron transport and iron blood level were all fine.
More blood tests today. Nichelle was understandably a bit worried because they contain some standard screenings for cancer markers.
She also had another vitamin D test run. If that turns out to be low, they will start the high-dosage vitamin D therapy.
It would be lovely if that turns out to be the problem. Then we could simply watch the Vitamin D level every couple of months, and when it gets low for her, intervene.
So we wait as patiently as possible, and pray.
I hope you feel better quicky and pray for God’s strength and peace to be with you throughout all of this. Somehow, someway, we KNOW God will use this for good in your life (Romans 8:28!).
Our little Kronos bible study group will keep you in prayer too!
After days of feeling not-very-good-at-all, Nichelle just sent me a text saying she’s feeling normal, and is doing laundry and—of course—getting in her strength training.
What a woman!
We’re grateful for the good hours, but they haven’t lasted very long of late.
Glad to hear Nichelle’s feeling better today.
Doug, as you know, our family’s been through a lot with physical illnesses and raising a special needs child. What we’ve really learned along the way, and are still learning today, is that we are on a journey designed by God, and we are simply asked to take that journey with Him, one day at a time, one step at a time, and to trust him with it. As we’ve endeavored to do that, we have experienced more of His peace, joy, hope, and contentment then ever before. It’s been difficult, but worth it!
We hope and pray that you and Nichelle experience the same and more in your own peronsal journeys with Him.
We’ll continue to pray for you!
Gene and Nancy
Four moderately bad days with fogged thinking and intermittent pains. Sixteen good hours (8 of them spent sleeping), and the past 24 hours of severe pain.
Last night Nichelle did not want to move from the couch, so I grabbed some blankets and slept next to her on the floor.
This has been disheartening.
Her second vitamin D test (and some other tests) will be evaluated in a doctor’s appointment next week.
Good news, perhaps?
Nichelle’s second vitamin D test came back as below normal (26, where 30 is the lower border).
This may mean that she could be back to normal soon.
Yeh, vitamin D! God, may it be so!! Am praying, God keep you all. Love you all too.
So, we sneaked in to see a recommended endocrinologist yesterday, primarily to talk about the vitamin D level.
The bottom line is, Nichelle is increasing her supplemental D to 4,000 IUs per day.
Other than that, we have no more useful data. Nichelle had a great day on Saturday—we even got out to see Slumdog Millionaire (Fabulous!), but every other day has been somewhere between bad and terrible.
More doctor’s visits later this week. Next up is hematology.
We did not like the hematologist with whom we met. He seemed completely unfamiliar and uninterested about the facts of Nichelle’s case.
Ultimately he was concerned that the vitamins and supplements Nichelle takes (only one or two of which I find suspect) were causing her low blood counts, and wanted her to stop taking them for six weeks before running more blood tests. Then, depending on the results of those tests, he may order a bone marrow biopsy.
He ordered her to stop taking all supplements—including the vitamin D which another doctor had ordered increased. (When he rescinded this, he failed to realize that he should also have gone back on his prohibition of taking Calcium, which is required for proper absorption and use of vitamin D.)
Plus, he didn’t think NaNi was cute.
Bad, bad man.
Naomi was at my office on Friday while Nichelle had a liver and spleen scan at the radiology lab.
I endured Naomi, teary-eyed, talking to Nichelle on the phone: “I want you to be better. Did they find out what was wrong with you?”
Are you going for another opinion?
Yes, we’re trying to coordinate things with our primary care doctor now, as well as looking into multi-doctor, multi-specialist diagnostic approaches, if we can find one.
You’d think some doctor would want to have a fascinating and unusual syndrome named after him or her. Maybe we should recruit Michelle MeloCosta.
Have you researched on your own Dr.’s? A little advice? Don’t just take another referral from Nichelle’s PCP. Go find someone and then consult with with the PCP. Have you looked @ the Dana Farber?
We do usually research our own people, and have embraced and rejected a number of doctors. Unfortunately, the best ones can’t usually accommodate us quickly, and it’s sometimes a good idea to get things going.
Nichelle checked out Brigham & Women’s for diagnostics today, but hasn’t heard back. She’ll add Dana Farber to the list.
Thanks for you advice.
Today was really bad for Nichelle neurologically. She seemed very foggy and spacey, in addition to having numerous episodes of pain.
Doug, I don’t know if I can help, I will. Give me a call, I am in the book.
The past few days have brought numerous episodes of severe pain (labor-pain level, according to Nichelle).
Yesterday she was almost sent to the E/R again by ambulance, after reporting trouble breathing (which seems to have been a misperception of some kind); sometimes the neurological and cognitive issues that accompany this can be bizarre.
When the EMTs arrived, they verified that Nichelle’s vitals were all fine, so she elected to skip the E/R visit.
Nichelle had a long talk with our PCP yesterday, and we continue to keep things moving on the medical front. Our doctor was also agreed that the hematologist we’d seen was not doing his job.
I am at this very moment, pain free with lots of energy.So much to do…
I’d also like to say thank you all for your continued prayers and concern as well as your input. They have been truly appreciated. But it’s not done yet, I know, so please keep on praying.
The past few days have brought an unpredictable mix of a few good hours interspersed with many bad hours. It seemed like things might have been trending ever-so-slightly upward, but I don’t think we can quite make such an assessment.
Nichelle has a neurology visit today (Tuesday).
We’re getting closer to finishing setting up appointments with Brigham & Women’s for diagnostics.
Yesterday Nichelle IMed me, saying, “I was just praying that I would get an appointment [at Brigham & Women’s], and David said that I’d gotten a call.”
We’re going in Monday afternoon.
The neurologist discovered a likelihood of migraines. This explains some of the numbness and “brain fog” symptoms that have been present, but not the overwhelming pain. So far, some anti-migraine medication has made Nichelle much more clear-headed while, as predicted, doing nothing for the stabbing pains.
And the pain for the past few days has been very bad.
We received a fibromyalgia diagnosis many years ago, and stuck with it for a while. However, FMS doesn’t explain the severe debilitating pain symptoms that completely disappeared for years. It’s also a syndrome—merely a collection of symptoms, and doesn’t at all explain cause or recommend effective treatment. We also don’t believe that an FMS sufferer could have kept up the exercise or strength training regimen that Nichelle has been doing for the past 3 years, nor that FMS would disappear and reappear so abruptly.
However, in the past week, we’ve determined (with reasonable certainty), that some of the current badness is caused by atypical migraines, which we are getting some treatment for, and it has been partly effective in reducing the “brain cloud” effect, dizziness, nausea, limb weakness, and numbness sensations. (Effective migraine mitigation can take some medicinal experimentation.)
But, according to our neurologist, these do not explain the stabbing pains that occur with such severity. He also wants to try to figure out what is causing the migraines to occur.
Last night Nichelle felt great for about 6 hours. When she awoke this morning, she was in serious pain just about everywhere. Generally, we get six to eight good hours once or twice a week at present.
Our primary care doctor (actually, she’s an NP) is very seriously pursuing this, which was a relief after getting a “There may not be a medical answer to this,” from the hematologist we consulted at Dana Farber.
Is she taking a benzodiazepine (the most common are :klonopin, vallium, xanax, or ativan), these symptoms sound like tolerance withdrawal. Even if off the drug these symptoms can linger for some time. “Windows” where one feels normal and “waves” where the symptoms reappear is a common cycle. It has to drug with the body becoming physically dependent on the chemical changes caused by the drug, it is a CNS issues.
Benzo Withdrawal Symptoms:
http://www.benzosup port.org/ reovery_tips. htm