Tuesday, June 10, 2014

Diagnosis

What follows is a post describing various medical issues. While I tend to be pretty open about health anyway (for better or worse), I am sharing so much here because I hope others who have struggled with unknown medical issues for a long time might recognize themselves in this story. It is vitally important to be one's own health advocate, as well as an advocate for your loved ones. If you think something is wrong, it might be. At the very least, it might be an indication of a greater problem.

Or you might just be a hypochondriac. It's hard to say.

(I write that last sentence with my tongue firmly implanted in my cheek -- for I have often questioned my own propensity towards hypochondria. I believe my quick willingness to attribute any health issue to hypochondria has probably made it more difficult to come up with a diagnosis. It is not helpful to a medical practitioner when a patient is embarrassed to bring something up because she thinks she is surely just being a hypochondriac and doesn't want to appear silly.)


The Diagnosis


We moved to California for various reasons, but the easiest one was that we needed to find a way to manage my health. I'd been diagnosed with Rheumatoid Arthritis and was hesitant to take the medicines my rheumatologist had prescribed. A little cost-benefits analysis* revealed that they might yield worse side effects than what the disease itself was already doing to me. However, we also knew that were I to let the disease progress, it could become a lot worse.

Since deep cold and high humidity both have a profound effect on the pain involved in RA (a symptom that had been plaguing me for several years prior to diagnosis), we knew we needed to leave Illinois.

What we did not know was that leaving Illinois and the doctors I had come to know for many years would lead to clarifying my health situation. It would also allow some much needed healing for my eldest daughter.

I lucked into finding an integrative rheumatologist here. He has extensive experience viewing auto-immune diseases (which are systemic) from every angle. Rather than just checking my RA factor, which was negative in Illinois, thus rendering my diagnosis "seuro-negative RA", and my inflammation factors, he checked for everything -- including minor lifestyle factors.

His initial hunches, based upon ultra-sonic pictures of my joints, symptoms, the onset of symptoms, life and health history, etc. were that I had either Chronic Lyme Disease or its unrelated twin, an overgrowth of the Yersinia bacteria, both potential causes of Rheumatoid Arthritis. He also suspected several other auto-immune diseases -- as the little buggers travel in packs.

My blood tests revealed that I had become seuro-positive for RA sometime between the tests I received in Illinois last summer and this spring. I did not have chronic Lyme disease (this was a huge relief to me as I had been treated for Lyme when I was in college**). I do have a ravenous lot of Yersinia that he believes has created and/or exacerbated Rheumatoid Arthritis/Reactive Arthritis, and Sjorgrens Syndrome, and exacerbated an existing case of: Polycystic Ovary Syndrome.

With that, I am being treated with an anti-biotic (estimated 6-12 months), a probiotic, supplements, a bio-identical hormone, significant dietary changes, and will begin taking a regular anti-inflammatory when we find one that I can take long-term and to which I am not allergic. The doctor is confident that we might get at least the RA into remission within a year. This is much better news that that I had received in Illinois (that I would be battling this for life and it could become debilitating).

As we have worked to get my pain under control, pain that my eldest (aka "Rhubarb" on this blog***) has experienced in her lower body for as long as she can remember has intensified. We had posited that perhaps she has been experiencing lingering pain from early Rickets or that her early rapid growth was to blame. Pediatricians told us that, at worst, it was due to her flat feet, but was most likely nothing. Still, I thought it unusual for a child to have pain in her lower extremities without provocation. Her pediatrician felt that because it did not prevent her from being active (this is true) that we should not worry about it. Truthfully, my concern sort of waxed and waned with her pain as well. It was not painful everyday and she continued to exert more energy than a hummingbird.

Upon arriving in California, though, she started to limp regularly and complained of pain daily. She stopped being so active. Further, she had developed daily headaches, regular fatigue, the pain in her knees and hips was interrupting her sleep, and her vision felt labored despite her lenses prescription remaining the same. She was no longer the vibrant, energetic, active daughter I knew. I sought a pediatrician with experience in international adoption.

She agreed that chronic pain is not normal for a child, even one who remains fairly active. She sent her for an x-ray, which showed some hip dysplasia. Further evaluation, however, revealed that the hip dysplasia is pretty minor and seems secondary to her other issues. Her pediatrician took blood and determined that she should see a rheumatologist. Fortunately, I knew a great one.

At first, the rheumatologist speculated that she and I might share an overgrowth of the Yersinia bacteria (perhaps picked up in Haiti) and it had also caused an auto-immune disease for her.

We received her results last week. She is, according to blood work, "severely" anemic" and remains deficient in vitamin D. Her RA factor also came back borderline (not surprising considering the deficiency in vitamin D). Her anemia is likely a carry-over from early malnutrition that grew worse at a time in her life when many girls develop anemia. Combined with the minor hip dysplasia, it is serious enough to cause all of the symptoms she has been having.

The great news, though, is that a few IV infusions of iron, combined with a greater intake of dietary iron and some heavy duty vitamin D, should do the trick. We are all thrilled with this news.

On the down side, we are both dealing with daily pain, fatigue, headaches, dryness (Sjogren's) etc., not to mention the regular poking and prodding done by really wonderful medical professionals. It can makes us pretty cranky. Just ask the other three members of the family.

It's not fun feeling sub par and not yet seeing the light at the end of the tunnel (for me -- I write this perched upon a comfy chair, leg elevated and iced after a removal of 15 ml. liquid from my knee and a cortisone shot that is causing some unpleasant side effects). It is frustrating to wake up fine one day and unable to walk unassisted the next. I am impatient that the move to California has not magically cured everything. It is especially tough to watch my daughter, who should be out playing in the waves at the beach instead of sleeping on a towel next to me, struggle.

On the up side, we are also feeling positive about the care we are receiving (It took about two years to go from being in regular, daily pain -- for me -- to the initial diagnosis of RA, and another nine months after that to develop a treatment plan that is not worse than the disease itself. I am told that this part of the process is common with RA). We also feel pretty lucky to have eliminated some of the other factors affecting our health, namely the weather. Finally, we are feeling fortunate to be near family -- especially at a time when I need a little extra help.

It has taken years to get to this point, many of those with me in great doubt that we might figure things out.

So here's to a year ahead of hope and healing!


*Business people are welcome to admonish me if I used that phrase incorrectly. What do I know about economics?

**Interestingly, this was the first medical practitioner since I had Lyme Disease to ever ask me if I'd had it.

***Rhubarb approves this post, both of us hoping that if any of these symptoms sound familiar to your teen daughter or child who struggled with early malnutrition, you will get her iron levels checked.



1 comment:

Kerry McDonald, M.Ed said...

Mothering is hard enough without factoring in chronic health issues! Wishing you and your wee one wellness and peace in the weeks to come!

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