Monday, November 29, 2010


My latest MRI revealed that I almost surely do not have lupus, psoriatic arthritis, or any other systemic autoimmune disorder.  That's great news!

What I do have is tendonitis.  I also have the equivalent of carpel tunnel syndrome in my ankle (tarsal tunnel syndrome), plantar fasciitis in my heel, and other inflamed areas around tendons and ligaments.  That's all in my right foot and ankle, so we're assuming that the pain in the other areas of my body is of the same nature.  Since I've had no injuries and I don't overuse any of these parts of my body, my doctor thinks that I might have a genetic condition that makes me more susceptible to damage to my connective tissue.  Basically, I'm fragile.

This concierge physician I hired is finally starting to pay off.  The rheumatologist who ordered the MRI wanted to send me to a podiatrist for the foot problems and to a hand surgeon for my hand, and to specialists for every other part of my body that hurts.  She did not integrate the evidence.  My concierge physician did, and assures me that we will keep working to understand why this is happening so it can be treated in the most appropriate way.  He agrees with me that it is absurd to see separate doctors for each area of the body.  He and I agreed that the best step now is for me to go back to the pain specialist who performed my PRP therapy two years ago and get it done again.  It cured me for over a year last time, and the fact that it worked is consistent with this tentative and vague diagnosis.  I'm a little worried that I won't have time to get it done before the donor egg process interferes, but I'll find out in the next two weeks.

After that, the doctor wants me to have the genetic analysis he originally suggested.  His very first theory about my pain was exactly this (apparently there are rare but known genetic disorders that cause this kind of fragility), and I thought it was such a remote possibility that I didn't do the tests.  I'm still not sure what it would get me to do the genetic testing - I mean, I don't know if it would affect any decisions about long term treatment or management of my condition.  I plan to talk to the doctor more about that in a couple of months, as well as discussing what else might be causing this besides a genetic abnormality.  (The genetic analysis is expensive and not covered by insurance.)  For now, I'm just trying to get myself back to being functional without meds.

But I'm feeling a huge sense of relief since getting this diagnosis.  It's somehow much less scary to have tendonitis than lupus, even though I really have no idea yet if my condition could be degenerative or have other long-term effects that are worse than lupus.  But knowing that my pain is the same thing that people feel when they have tennis-elbow makes it seem less mysterious and threatening.  I guess the real issue is that I have less uncertainty.  Not knowing what was wrong with me was such a huge source of stress.  Not knowing why it would get worse and worse was scary because I never knew where it would end - at one point I was convinced I would be bedridden in a hospital within months.  Now I know that it gets worse because I keep moving.  I can't really live without moving, but at least I have a framework for understanding what is going on in my body, and I can develop a plan to deal with it.

I have to admit that I also have a sense of relief and validation that now I know that my doctors and others can't write me off as a hypochondriac.  I've had crippling pain, with absolutely no evidence of a health problem, for years now.  I've had dozens of tests which, until now, have all been negative.  I've been told to consider what I deem to be irrational, non-scientific answers such as fibromyalgia (whose definition is essentially "mystery pain" and so means nothing) and leaky-gut syndrome (which claims to explain practically every ailment known to man, and so can not possibly explain anything).  I went by my own independent judgement and refused to accept anything that did not make sense to me, or which conflicted in principle with the rest of my knowledge, and I've been vindicated.  Even when I was wrong (by not following the concierge physician's initial advice), I had good reason, and I ended up at the truth in the end.

It's been a real strain on my self-confidence, though.  If I were Howard Roark or Dagny Taggart I might have been able to travel this path without self-doubt, but I have had a lot of self-doubt.  Coming to this place now is more than just a step towards physical health - it's also a great lesson for my mental health.  I just spent three years trying to solve a problem and it seemed that at every turn, there was someone or something trying to convince me that I was deluded.  But, by persisting and relying on my own judgment, I did solve the problem.  Or, at least, I've begun to.  It's a great boon to my self-esteem, which, lately, has been very fragile itself.


  1. Amy,
    If inflammation is involved in the symptoms you are experiencing, I recommend reading "The Anti-Inflamation Zone" by Dr. Barry Sears.

  2. Good for you, Amy.

    As one who has had ongoing mystery pain (which turns out in my case to have been caused by old sports and work injuries wanting to tug my spine in wrong directions) I do know how much of a blessed relief it is to find someone able to integrate seemingly diverse symptoms to make a rational diagnosis.

    Onwards and upwards. :-)

  3. I can only imagine your frustration at trying to solve your medical mystery - especially with professionals who want to treat one or more symptoms rather than find the cause.I admire your persistence. I hope this breakthrough leads to more answers and helpful treatment.